Peace of Mind for Patsy

$56,717raised of $65,000 goal
87%

Organizer: Alissa Hogan - Long time friend of the Martin Family Beneficiary: Patsy Martin & Family

ALS took the life of Patsy Martin on 8/17/14. We are doing a final fundraising push to help her family with medical and funeral costs.

This fundraiser is closed
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Fundraiser Details

Updated 9/3/14


On August 17th in the early morning hours our Patsy earned her wings.

 

Eulogy for Patsy L. Martin

Given by Chuck Martin (son)

Saturday, August 23, 2014

Clarinda High School Auditorium

Good morning. For those of you who do not recognize me behind this beard, gut, and receding hairline, I am Patsy and Ed’s other child who resides in Chicago, where I teach seventh and eighth grade at a small private Montessori school located near O’Hare Airport. In fact, you probably still think of me as the small boy about this tall*gesture to about the knee* who seemed permanently attached to his mother’s leg. Either way, feel free to just call me, “Chuck.”

Let me begin by expressing immeasurable amounts of gratitude on behalf of my family for the outpouring of support and love we received throughout Mom’s illness. From the hospice workers, the ALS Foundation and Clinic, and the staff of Westridge to the army of caretakers and volunteers, your hard work, generosity, patience, and understanding seemed utterlylimitless. You truly became part of our family. To all of you who participated in the benefits, promoted the website, and purchased and sold the bracelets, your generosity helped keep our family afloat financially and truly provided Mom a sense of peace. Finally, thank you, thank you, thank you for the countless visits, letters, phone calls, Facebook messages, and emails of support and love Mom received over the past few years. Receiving them was her favorite part of the day, and those messages often gave her the strength and fortitude to continue. More than anything, thank you for helping our family feel blessed even during our darkest hours.

If this was a slightly different occasion and Mom were here, I suspect she would be wearing a mix of red, black, white,and maroon.  Depending on the type of event, we might haveeven seen her proudly sporting a CHS Teacher and SHS Momsweatshirt. Mom did not care how much those sweatshirts embarrassed my sister and me. Showing her pride and affection for both communities was a non-negotiable in our family, and that goofy sort of affectionate doting was commonplace in our home. So imagine my surprise when a Clarinda freshman informed me that my mom, the most docile person I have ever known, was one of the scariest teachers he’d ever had at a Shenandoah/Clarinda sporting event. “My mom?” I asked. “Mrs. Martin? The one wearing mom jeans and the Clarindoah” sweatshirt, carrying around her bag of papers because she mightjust get a few checked between innings? Her?

It turns out, my mom was one of the Wicked Witches – East or West – I can’t remember, and, according to my source, she could strike fear into any Clarinda student with one simple move: the lowering of her glasses on her nose so that she could stare straight through their eyes and into their soul. Who knew? Apparently my mom had special superhuman powers – powers so potent that I can only assume she refused to use them on her own children for fear of causing permanent damage.

On the way home, I told Mom about my conversation with the Clarinda boy, whom she quickly admitted received more than his fair share of such glares. But, she explained, he wasn’t exactly right about hetrue motivations. You see, Mom had a weakness: she had always had an affinity for jokesters and troublemakers  heck, she even married one. They were like her teacher Kryptonite. She always had a hard time keeping astraight face when chiding those particular students. So in order too keep from laughing along with the jokester and the rest of the class, she lowered her glasses on her nose, completely blurring her vision and forcing her to merely squint in the general direction of the naughty student. “I just wanted to keep from laughing – the whole-wicked-witch-evil-stare-thing was just an added bonus,” she explained. “No real harm was done, and it got them to behave.”

“But, Mom,” I protested, “doesn’t it bother you that they’re calling you bad names?”


“Oh, Honey!” she laughed. “If a teacher isn’t being called bad names once in a while, she probably isn’t pushing hard enough.”
 That’s how Mom was: she helped others reach their potential by maintaining high standards and expectations while still providing plenty of love and support – along with a healthy dose of her unique humor.

Mom once warned me, “Never trust someone who tells you they’re nice. A nice person doesn’t have to tell you: they just are and people know it. Just like a person of faith needn’t remind others of their beliefs, because they should just simply live their faith.” This advice has served me well over the years and helped me navigate numerous different relationships. As I’ve grown older, I now realize that it was more than advice to my mom – it was her philosophy of life.  Mom believed that God was love, so to be closer to Him, she spent most of her life loving others through constant affection and a desire serve others. As a result,Mom was many things to many different people: a teacher, a mentor, a coworker, an Episcopalian, a fellow Legion member, a sister, a cousin, a classmate, a neighbor, a friend, a wife, a mother. Simply put: she was love. 

Thank you.

 

 

HOW CAN I HELP? WHAT IS APPROPRIATE?

 

 

Visitors

 

If you’d like to visit the Martin home please first reach out to Holly at boomasooner@gmail.com. At times they welcome visitors, others they’d prefer their privacy. Please don't be surprised or offended if they refuse visitors or do not respond to your calls.

 

 

 

Bringing Food / Cooking Meals

 

Please don't. The family has specific dietary needs due to Ed's diabetes and Holly's allergies. They also have an in-house chef in Curtis who loves to cook as a form of stress relief so they are more than covered. Instead consider sending them a card with a HyVee gift card to help with the expense of food.

 

 

 

Cards / Gifts

 

Instead of gifts, cards, or flowers please consider making a donation to the Martins directly (information below) or to the Iowa Chapter of the ALS Association that supported Patsy during this past year (https://secure2.convio.net/alsa/site/Donation2;jsessionid=6DE5FADD66603DFD550194D46EF09793.app276b?2682.donation=form1&idb=1448528288&df_id=2682&2682.donation=root).

 

 

   

Donate! Get others to donate!

 

I know it sounds like such an impersonal thing to do when you want to express your support and prayers, but let's face it ... money is the biggest way you can support the Martins right now. It will make sure that they can take this time off work. It will make sure that the Martins do not have to worry about the cost of the care facility and upcoming funeral expenses. Your donation will be placed in an account that the Martins can use as they see fit.

 

You can donate on-line at www.youcaring.com/Peace_of_Mind_for_Patsy. If you don't want to donate on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account". If you are local feel free to drop it off at Page County State Bank. If you are not local you may mail it directly to the Martin home (1465 220th Street, Shenandoah, IA 51601-4562).

 

 

 

Note: The organizer of this web page is Alissa Hogan. Her mother Joyce was a childhood friend of Patsy & Ed. Though not raised in the area her grandparents Verena & Jack Roscoe remained there so she visited holidays and summers and grew up with Holly & Chuck as if cousins. She currently lives in Omaha, NE but gets down to Shen to help as often as possible. She does not represent any organization or charity but is doing this as a friend of the Martin family with their express permission & continuous involvement.

 

Contact the Organizer
Updates

Updates

09/17/2014
by Alissa Hogan - Long time friend of the Martin Family

SATURDAY OCTOBER 4th, 2014

DES MOINES, IOWA – Principal Park

ALS Association Iowa Chapter Walk to Defeat ALS! 


JOIN THE TEAM WALKING TO HONOR PATSY: http://bit.ly/JoinTeamALSA  

Instructions:   On this page click “Join Team”,  then again you’ll have to click “Join Team”.   Where you can search for a Team Name type in “Team Patsy”.   Then just click JOIN!    If you have any problems let Holly know you’d like to join the team by e-mailing her at boomasooner@gmail.com

 

DONATE HELP THE TEAM REACH THEIR FUNDRAISING GOAL: http://bit.ly/DonateALSATeamPatsy


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09/03/2014
by Alissa Hogan - Long time friend of the Martin Family
For those who were unable to attend, we wanted to share Chuck's beautiful tribute:

Eulogy for Patsy L. Martin

Given by Chuck Martin (son)

Saturday, August 23, 2014

Clarinda High School Auditorium

Good morning. For those of you who do not recognize me behind this beard, gut, and receding hairline, I am Patsy and Ed’s other child who resides in Chicago, where I teach seventh and eighth grade at a small private Montessori school located near O’Hare Airport. In fact, you probably still think of me as the small boy about this tall*gesture to about the knee* who seemed permanently attached to his mother’s leg. Either way, feel free to just call me, “Chuck.”

Let me begin by expressing immeasurable amounts of gratitude on behalf of my family for the outpouring of support and love we received throughout Mom’s illness. From the hospice workers, the ALS Foundation and Clinic, and the staff of Westridge to the army of caretakers and volunteers, your hard work, generosity, patience, and understanding seemed utterlylimitless. You truly became part of our family. To all of you who participated in the benefits, promoted the website, and purchased and sold the bracelets, your generosity helped keep our family afloat financially and truly provided Mom a sense of peace. Finally, thank you, thank you, thank you for the countless visits, letters, phone calls, Facebook messages, and emails of support and love Mom received over the past few years. Receiving them was her favorite part of the day, and those messages often gave her the strength and fortitude to continue. More than anything, thank you for helping our family feel blessed even during our darkest hours.

If this was a slightly different occasion and Mom were here, I suspect she would be wearing a mix of red, black, white,and maroon.  Depending on the type of event, we might haveeven seen her proudly sporting a CHS Teacher and SHS Momsweatshirt. Mom did not care how much those sweatshirts embarrassed my sister and me. Showing her pride and affection for both communities was a non-negotiable in our family, and that goofy sort of affectionate doting was commonplace in our home. So imagine my surprise when a Clarinda freshman informed me that my mom, the most docile person I have ever known, was one of the scariest teachers he’d ever had at a Shenandoah/Clarinda sporting event. “My mom?” I asked. “Mrs. Martin? The one wearing mom jeans and the Clarindoah” sweatshirt, carrying around her bag of papers because she mightjust get a few checked between innings? Her?

It turns out, my mom was one of the Wicked Witches – East or West – I can’t remember, and, according to my source, she could strike fear into any Clarinda student with one simple move: the lowering of her glasses on her nose so that she could stare straight through their eyes and into their soul. Who knew? Apparently my mom had special superhuman powers – powers so potent that I can only assume she refused to use them on her own children for fear of causing permanent damage.

On the way home, I told Mom about my conversation with the Clarinda boy, whom she quickly admitted received more than his fair share of such glares. But, she explained, he wasn’t exactly right about hetrue motivations. You see, Mom had a weakness: she had always had an affinity for jokesters and troublemakers  heck, she even married one. They were like her teacher Kryptonite. She always had a hard time keeping astraight face when chiding those particular students. So in order too keep from laughing along with the jokester and the rest of the class, she lowered her glasses on her nose, completely blurring her vision and forcing her to merely squint in the general direction of the naughty student. “I just wanted to keep from laughing – the whole-wicked-witch-evil-stare-thing was just an added bonus,” she explained. “No real harm was done, and it got them to behave.”

“But, Mom,” I protested, “doesn’t it bother you that they’re calling you bad names?”


“Oh, Honey!” she laughed. “If a teacher isn’t being called bad names once in a while, she probably isn’t pushing hard enough.”
 That’s how Mom was: she helped others reach their potential by maintaining high standards and expectations while still providing plenty of love and support – along with a healthy dose of her unique humor.

Mom once warned me, “Never trust someone who tells you they’re nice. A nice person doesn’t have to tell you: they just are and people know it. Just like a person of faith needn’t remind others of their beliefs, because they should just simply live their faith.” This advice has served me well over the years and helped me navigate numerous different relationships. As I’ve grown older, I now realize that it was more than advice to my mom – it was her philosophy of life.  Mom believed that God was love, so to be closer to Him, she spent most of her life loving others through constant affection and a desire serve others. As a result,Mom was many things to many different people: a teacher, a mentor, a coworker, an Episcopalian, a fellow Legion member, a sister, a cousin, a classmate, a neighbor, a friend, a wife, a mother. Simply put: she was love.

Thank you.


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08/19/2014
by Alissa Hogan - Long time friend of the Martin Family
Great article in the Register!

http://www.desmoinesregister.com/story/news/local/kyle-munson/2014/08/19/als-ice-bucket-challenge-no-gimmick-patsy-martin-family/14278421/ 
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08/18/2014
by Alissa Hogan - Long time friend of the Martin Family

FUNERAL / VISITATION INFORMATION:

 

Visitation:   Friday, August 22nd, 2014 from 5:30PM to 7:30PM

Location:

Kirsch Funeral Chapel

405 West Thomas Ave.

Shenandoah, IA 51601

Directions: http://kirschfuneral.com/

 

Funeral:  Saturday, August 23rd, 2014 at 10:00AM

Location:

Clarinda High School Auditorium

100 N Cardinal Drive

Clarinda, IA 61632-1307

Directions: http://mapq.st/1pWfUIm

 

Burial:  Immediately following Funeral on Saturday, August 23rd, 2014

Location:

Rose Hill Cemetery

307 Carter Street

Shenandoah, IA 51601

Directions: http://mapq.st/1rNZ0v1

 

 

HOW CAN I HELP? WHAT IS APPROPRIATE?

 

 

Visitors

 

If you’d like to visit the Martin home please first reach out to Holly at boomasooner@gmail.com. At times they welcome visitors, others they’d prefer their privacy. Please don't be surprised or offended if they refuse visitors or do not respond to your calls.

 

 

 

Bringing Food / Cooking Meals

 

Please don't. The family has specific dietary needs due to Ed's diabetes and Holly's allergies. They also have an in-house chef in Curtis who loves to cook as a form of stress relief so they are more than covered. Instead consider sending them a card with a HyVee gift card to help with the expense of food.

 

 

 

Cards / Gifts

 

Instead of gifts, cards, or flowers please consider making a donation to the Martins directly (information below) or to the Iowa Chapter of the ALS Association that supported Patsy during this past year (https://secure2.convio.net/alsa/site/Donation2;jsessionid=6DE5FADD66603DFD550194D46EF09793.app276b?2682.donation=form1&idb=1448528288&df_id=2682&2682.donation=root).

 

 

 

Donate! Get others to donate!

 

I know it sounds like such an impersonal thing to do when you want to express your support and prayers, but let's face it ... money is the biggest way you can support the Martins right now. It will make sure that they can take this time off work. It will make sure that the Martins do not have to worry about the cost of the care facility and upcoming funeral expenses. Your donation will be placed in an account that the Martins can use as they see fit.

 

You can donate on-line at www.youcaring.com/Peace_of_Mind_for_Patsy. If you don't want to donate on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account". If you are local feel free to drop it off at Page County State Bank. If you are not local you may mail it directly to the Martin home (1465 220th Street, Shenandoah, IA 51601-4562).

 


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08/17/2014
by Alissa Hogan - Long time friend of the Martin Family
This morning our Patsy became an angel.   She is free now.   We will post funeral information as soon as things are set up.   
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08/15/2014
by Alissa Hogan - Long time friend of the Martin Family

Patsy remains at Westridge Quality Care & Rehab in Clarinda.   In speaking with the family they are fine if people want to come visit.   She’s in room 515.  The address is 600 Manor Drive, Clarinda, IA 61632.   If you do go visit please be aware that Patsy is and will remain unresponsive.   She is under medication to keep her resting until she passes, which won’t be long.   You may also hear her breathing is very gargled and she coughs now and again.   The staff are suctioning the fluid regularly and turning her to keep her comfortable. 

 

If you’d like to visit the Martin home please first reach out to Holly at boomasooner@gmail.com.  At times they welcome visitors, others they’d prefer their privacy. 

 

I strongly encourage you to spread the word about our efforts to continue to raise funds for the Martins.   Again, I know it sounds like such an impersonal thing to do when you want to express your support and prayers, but let's face it ... money is the biggest way you can support the Martins right now.  It will make sure that they can take this time off work.  It will make sure that the Martins do not have to worry about medical and funeral expenses.  Your donation will be placed in an account that the Martins can use as they see fit.

 

You can donate on-line at www.youcaring.com/Peace_of_Mind_for_Patsy.  If you don't want to donate on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account".  If you are local feel free to drop it off at Page County State Bank.  If you are not local you may mail it directly to the Martin home at 1465 220th Street, Shenandoah, IA 51601-4562. 


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08/12/2014
by Alissa Hogan - Long time friend of the Martin Family

Passing along Holly’s message for any of you that are not on the Peace of Mind for Patsy Facebook page:

 

Mom is settled in at Westridge Care Facility and is also still under the care of the SMH Hospice. She seems comfortable, and peaceful. She isn't responsive, and we have asked them to keep her medicated so that she remains not in pain until the end. Thank you for your thoughts and prayers.  – Holly

 

To expand on Holly’s message, Patsy has had to be medicated to the point of unconsciousness since Friday as her difficulty breathing and pain was too much for her.  She will need this until she passes, which will not be long as per her wishes she has received no food / water or other medical interventions.  She receives only medications to keep her comfortably resting.    Holly, Ed and Chuck are with her almost constantly.  

 

When the time comes we will notify you & pass along the details of the memorial service.   Until then please continue to give the family their privacy and quiet.  

 

I would also like to encourage you to consider making a donation to support the family with final expenses.   See the main page at www.youcaring.com/Peace_of_Mind_for_Patsy for the different ways you can donate.  

 

Thank you. 


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08/07/2014
by Alissa Hogan - Long time friend of the Martin Family
Our Patsy has been struggling with pain and discomfort since Friday.  Attmpts to manage this in home were unsuccessful so today she was transferred to the Shenandoah Memorial Hospital Hospice Room.   We hope to get the pain under control and keep her comfortable. 

No one can tell us how long we have left, not even the doctors, but it is clear that Patsy has moved into the final stages of the disease where she will have more bad days than good.  We all knew that this would come eventually but with an average life expectancy of 3 to 5 years after diagnosis we'd hoped for more time. 

What can you do?   What is appropriate? 


Visitors:  

The instinct when hearing such news is to rush over to visit the hosptial or the home.  Please stop and think before you do this.  The family needs their quiet time together right now.  

If you feel strongly that you must visit, please do not come unannounced.  Reach out first and ask when would be a good time (Holly's e-mail is boomasooner@gmail.com).   DO NOT BE SUPRISED OR OFFENDED if you are told that they are not taking visitors.  Patsy has lost almost all of her ability to communicate and with the medications to manage her pain she may not be responsive.  The family is also drained of energy in this sad time so they too may not be up to having visitors.  Please respect their privacy. 

Also be aware that depending on when you last saw Patsy the change in her may be very upsetting to you and your reaction could be very upsetting to her.  Simply, this is not the time for everyone who hasn't been visiting in the months prior to rush there.  It could upset the family more than comfort them. 


Bringing Food / Cooking Meals

Please don't.  Patsy cannot eat your treats.  She is at the point where she cannot eat or drink through her mouth at all.   The family has specific dietary needs due to Ed's diabetes and Holly's allergeis.  They also have an in-house chef in Curtis who loves to cook as a form of stress relief so they are more than covered. 

Instead consider sending them a card with a HyVee gift card to help with the expense of food.   Or you could use yhour cooking skills to host a bake sale or neighborhood pot luck event to raise money to go to the Martins.  If you do an event please contact alie_hogan@hotmail.com so that we can get approval from the family and instruct you on how to get hte funds to the Martins.   Please understand that the Martins may not be able or willing to attend events as they did with the previous spaghetti suppers.   Things have changed a great deal since then. 


Cards / Gifts

Instead of gifts or flowers please consider making a donation! Do feel free to send cards to the Martin home through the mail.  Patsy is not on Facebook or e-mail so messages sent this way will not reach her.  Cards sent to the home will be brought to her by the family.  The mailing address is:  1465 220th Street, Shenandoah, IA 51601-4562. 


Donate!   Get others to donate! 

I know it sounds like such an impersonal thing to do when you want to express your support and prayers, but let's face it ... money is the biggest way you can support the Martins right now.  It will make sure that they can take time off work as needed.  It will pay for Chuck's flights home (he goes back to Chicago to get ready for the school year on Friday).  It will make sure that the Martins do not have to worry about medical and funeral expenses. 

You can donate on-line at www.youcaring.com/Peace_of_Mind_for_Patsy.  If you don't want to donate on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account".  If you are local feel free to drop it off at Page County State Bank.  If you are not local you may mail it directly to the Martin home (address listed above). 
Share This Update!


08/07/2014
by Alissa Hogan - Long time friend of the Martin Family
Our Patsy has been struggling with pain and discomfort since Friday.  Attmpts to manage this in home were unsuccessful so today she was transferred to the Shenandoah Memorial Hospital Hospice Room.   We hope to get the pain under control and keep her comfortable. 

No one can tell us how long we have left, not even the doctors, but it is clear that Patsy has moved into the final stages of the disease where she will have more bad days than good.  We all knew that this would come eventually but with an average life expectancy of 3 to 5 years after diagnosis we'd hoped for more time. 

What can you do?   What is appropriate? 


Visitors:  

The instinct when hearing such news is to rush over to visit the hosptial or the home.  Please stop and think before you do this.  The family needs their quiet time together right now.  

If you feel strongly that you must visit, please do not come unannounced.  Reach out first and ask when would be a good time (Holly's e-mail is boomasooner@gmail.com).   DO NOT BE SUPRISED OR OFFENDED if you are told that they are not taking visitors.  Patsy has lost almost all of her ability to communicate and with the medications to manage her pain she may not be responsive.  The family is also drained of energy in this sad time so they too may not be up to having visitors.  Please respect their privacy. 

Also be aware that depending on when you last saw Patsy the change in her may be very upsetting to you and your reaction could be very upsetting to her.  Simply, this is not the time for everyone who hasn't been visiting in the months prior to rush there.  It could upset the family more than comfort them. 


Bringing Food / Cooking Meals

Please don't.  Patsy cannot eat your treats.  She is at the point where she cannot eat or drink through her mouth at all.   The family has specific dietary needs due to Ed's diabetes and Holly's allergeis.  They also have an in-house chef in Curtis who loves to cook as a form of stress relief so they are more than covered. 

Instead consider sending them a card with a HyVee gift card to help with the expense of food.   Or you could use yhour cooking skills to host a bake sale or neighborhood pot luck event to raise money to go to the Martins.  If you do an event please contact alie_hogan@hotmail.com so that we can get approval from the family and instruct you on how to get hte funds to the Martins.   Please understand that the Martins may not be able or willing to attend events as they did with the previous spaghetti suppers.   Things have changed a great deal since then. 


Cards / Gifts

Instead of gifts or flowers please consider making a donation! Do feel free to send cards to the Martin home through the mail.  Patsy is not on Facebook or e-mail so messages sent this way will not reach her.  Cards sent to the home will be brought to her by the family.  The mailing address is:  1465 220th Street, Shenandoah, IA 51601-4562. 


Donate!   Get others to donate! 

I know it sounds like such an impersonal thing to do when you want to express your support and prayers, but let's face it ... money is the biggest way you can support the Martins right now.  It will make sure that they can take time off work as needed.  It will pay for Chuck's flights home (he goes back to Chicago to get ready for the school year on Friday).  It will make sure that the Martins do not have to worry about medical and funeral expenses. 

You can donate on-line at www.youcaring.com/Peace_of_Mind_for_Patsy.  If you don't want to donate on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account".  If you are local feel free to drop it off at Page County State Bank.  If you are not local you may mail it directly to the Martin home (address listed above). 
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07/03/2014
by Alissa Hogan - Long time friend of the Martin Family

VOLUNTEER CAREGIVERS NEEDED FOR PATSY!

We currently have SEVERAL openings as several of our regulars are on family vacations.  Please do try to help if you can!! :

Tuesday 7/8 12PM to 6PM shift
Thursday 7/10 8AM to 12PM & 12PM to 6PM shifts
Friday 7/11 8AM to 12PM & 12PM to 6PM shifts
Monday 7/14 8AM to 12PM shift
Tuesday 8/15 12PM to 6PM shift
Thursday 7/17 8AM to 12PM & 12PM to 6PM shifts
Monday 7/21 8AM to 12PM shift
Tuesday 7/22 8AM to 12PM shift & 12PM to 6PM shift

If you aren't comfortable doing it alone we are more than happy to have a buddy system where two people take the shift!   It isn't hard and you don't need medical experience!

If you can help please contact Teresa Simmons at tasimmons78@gmail.com


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06/01/2014
by Alissa Hogan - Long time friend of the Martin Family

NEED VOLUNTEER CAREGIVERS FOR PATSY!  

 

Monday afternoon THIS WEEK!! 

 

12:30 to 5:30ish!!! 

 

Possibly Thursday afternoon as well!! 

 

Contact Teresa at tasimmons78@gmail.com

 

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05/27/2014
by Alissa Hogan - Long time friend of the Martin Family

As June is quickly approaching, I still need some slots filled. If you are able to help out on any one day or two let me know. If you haven't been for a while (or ever) I can arrange for someone to 'train' you on the few things you need to know!!

Thursday ~ the 5th ~ afternoon  

Wednesday ` the 11th ~ afternoon 

Thursday ~ the 12th ~ afternoon  

Tuesday ~ the 24th ~ afternoon 

Wedensday ~ the 25th ~ afternoon 

Thursday ~ the 26th ~ afternoon 

Monday ~ the 30th ~ morning 

  

Please consider helping out the Martins and the volunteers that need some time for family activites. Or 'regulars' ~ moving to a different day/time!! 

 

Thank you,

 

Teresa 

tasimmons78@gmail.com


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05/10/2014
by Alissa Hogan - Long time friend of the Martin Family

I'm continually surprised by this journey of raising funds for the Martins.  Help doesn't come from where you think it will.  What do I mean?  Well, I'd think that the donors I'd get would be neighbors and coworkers... You know, the whole I bought your kids Girl Scout cookies crowd.   But instead along the way I've been touched by donations from people I'd never guess.   Just in response to my message yesterday about massages for Patsy we got a donation from a woman who was my pediatrician and mom of kids I played with on our block in Waterloo growing up.   She's never met Patsy or any of the Martins.   This isn't the first time either!  She donated once before and she's one of several people from my past that I probably would have lost all touch with if it were not for social media.  People I know care about me but I'd never expect to donate.

 

So share share share about this wonderful family and why you are supporting them!   You never know where the help will come from.   Sadly we don't have long with our beloved Patsy. Let's band together and really push raising those dollars to make sure we can keep her comfortable and at home!  

 

Ideas:

 

- Host a potluck or BBQ for your neighbors and friends as a fundraising .

 

- If you own a business offer some kind of deal to your customers.  I heard of a restaurant recently that is donating $3 for every Chicken  Parmesan dish sold to a local zoo.  

 

- Active in a church group or club?  Try to get a collection taken up for the Martins.

 

- Spread the word!  Post on your Facebook page.  Send emails to your contacts.  As you can see, you never know who will come through!


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05/08/2014
by Alissa Hogan - Long time friend of the Martin Family

YOUR HELP IS NEEDED!

 

As our Patsy’s ability to move and stretch continues to fade she is struggling with a great deal of aches and pains.   In addition her brain still tries to send signals to her muscles but as the nerves misfire it can cause cramping which is also incredibly painful.   She’s on medications to help but what really helps the most is massage.   This is something that is in no way covered by insurance so I’m reaching out to ask you specifically to help us cover the costs.   We have a massage therapist who has offered to come out to the house at a reduced rate of $45 per hour and a donor that has gotten us started for the next 5 weeks.  PLEASE consider making a donation to help us keep up these weekly massages to help ease Patsy’s pain!   If you can’t fund a full hour that’s fine – every little bit helps!  


You can donate in one of several ways:

On-line at www.youcaring.com/Peace_of_Mind_for_Patsy

Send a check made out to “Patsy Martin Benefit Account” to the Martin’s home at: 1465 220th Street, Shenandoah, IA 51601-4562  
 
If you would like your donation to be anonymous:

If you are local drop it off at Page County State Bank
 
Send it to: Alissa Hogan, 5114 Underwood Ave., Omaha, NE 68132

 

Please DO copy this message and paste to your Facebook page or e-mail to your contacts to help us spread the word!


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05/03/2014
by Alissa Hogan - Long time friend of the Martin Family

With Holly's surgery, there is no idea how fast she will be able to care for Patsy alone ~ ~ ~ SO ~ ~ ~ we are asking for help on the weekend of the 17th and 18th. Name your times. Holly will be there it is just a question of how much she can do! 

 

This would be a great opportunity for the people that work during the week. Let me know ~ PLEASE!!!! 

 

Also ~ evenings!! 

 

Thank you, 

 

Teresa

 

tasimmons78@gmail.com


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05/02/2014
by Alissa Hogan - Long time friend of the Martin Family

Update 5/2/14

 

In The News:

 

If you haven’t already seen the letters to the Editor in the Valley News be sure to check out the links below!   Patsy (with the help of one of her caregivers who did the typing) wrote a personal letter and there was also an article that praised all those who contributed!

 

Patsy’s thanks letter:  http://www.valleynewstoday.com/opinion/letters_to_editor/patsy-s-thanks/article_617330f0-c677-11e3-af6f-001a4bcf887a.html

 

P’Sghetti for Patsy Praise article:http://www.valleynewstoday.com/opinion/letters_to_editor/p-sghetti-for-patsy-praise/article_7885d77a-c677-11e3-8d9a-001a4bcf887a.html

 

May for the Martins

 

May will be a difficult month for the Martin family.   On May 9thHolly has to have surgery.  (I know what you are thinking … yes, this family has had more than their fair share of Murphy’s Law of what can go wrong will go wrong!)   She’ll be having three to four different procedures to correct issues with her sinuses and deviated septum.   This will take Holly out of work and away from being primary caregiver for Patsy for at least a week if not for more.   Our Volunteer Coordinator, Teresa Simmons, has worked incredibly hard to be sure we have coverage.   We still have some evening and weekend times left so if you are interested do contact her!  

 

Now I know “Hospice” is a word that will make many of you very sad.   As you probably know by now, ALS has no cure.  We’ve all known that this horrible disease will one day take our Patsy from us.  The average patient only lives 3 – 5 years after diagnosis.   I personally didn’t know what hospice really was until recently so I thought I’d give you a little more information.   I’ve learned the biggest difference is in the treatment philosophy.  Home Care is about caring for a patient with stable or improving health.  Patsy did improve a bit because of the medical care provided through her v-pap machine (helps with breathing at night so getting more oxygen) and her feeding tube.   To be on Hospice a patient has to show a steady decline in health / function.   Hospice is about keeping a terminally ill patient comfortable.  You’ll often hear the term “palliative care” along with “hospice”, this is because they go hand in hand.   Here’s some great information from Heartland Home Care & Hospice (Patsy’s care providers out of Red Oak, IA):

 

--------------------------------

What is palliative care?   Palliative care supports patients and families.

 

Palliative care, or comfort care, helps improve quality of life and relieve symptoms for people who have serious, chronic medical illnesses. This type of care focuses on decreasing pain and suffering by providing comfort, support and treatments to help relieve symptoms.   Palliative care uses a team approach that involves doctors, family, social services and other health care professionals.

 

Hospice care, which can be an important part of palliative care, involves helping terminally ill people and their families during the last period of life.

 

According to the American Medical Association, palliative care services may include:

•Managing pain by finding the source and relieving it.

•Managing symptoms by relieving problems such as nausea, weakness, bowel and bladder problems, confusion, fatigue, and difficulty breathing.

•Supporting the person emotionally and spiritually.

•Changing the environment to make the person more comfortable. This can include elements such as lighting and music and activities such as reading aloud.

•Educating the family about the illness, and teaching them how to give medications and recognize symptoms that might require immediate medical attention.

•Providing home support services, such as transportation, shopping and making meals.

•Providing support to the caregiver through respite care.

•Helping with financial planning.

 

Providing this care often requires a team of health professionals. Typical members of this team include:

•Doctors.

•Nurses.

•Social workers.

•Home health aides.

•Pharmacists.

•Chaplains.

•Physical and occupational therapists.

•Trained volunteers.

 

-------------------------------------------------------

 

Patsy will not see a huge difference at first as she switches from Home Care to Hospice.   She has already been receiving visits three times a week from Ashley, her Home Care Aide.  Ashley helps Patsy bathe and works with her on range of motion exercises / stretches.   She will also continue to see Celeste, her Registered Nurse.   Both are beloved by the family!  And of course Curtis tries to feed them every time they are here!  We already have the durable medical equipment:

 

Shower Chair:  This is a plastic chair that has a toilet like seat & wheels.  It allows Patsy to be rolled into the shower & the caregiver to reach the majority of her skin to be able to really get her clean.  

 

Hospital Bed:  This has been a great help as Patsy cannot sit up on her own any longer.  The bed lifts on the top to raise her up into a sitting position.  The lower half of the bed also raises up to support the patient’s knees – allowing her to be more comfortable since she is forced to sleep on her back and cannot move or adjust herself during the night.  The entire bed also goes up and down, which helps the caregiver depending on what task they are performing.  

 

Wheelchair:  This is an impressive piece of machinery!   Patsy is able to control it with a joystick with her one arm / hand that still has mobility.   Not only can she move around but also she can adjust her position even to the point of lying flat in the chair.   It is sturdy enough that she can drive it around outside so now that the weather is nice she’s getting out a bit.   We hope to have the cement drive put in shortly to make this even easier.  

 

V-Pap Machine:  This is a machine where there is a mask that goes over Patsy’s mouth & nose when she sleeps.  It pushes air into her lungs all night.   It’s no fun to sleep in – not exactly comfortable … but she can tell the difference in how she feels the next day.  She has much more energy because of the increased level of oxygen she gets with the machine.  

 

Sit/Stand Machine:  This machine lifts Patsy from a seated position into a standing position.   It’s a little hard to explain … Basically there is a harness that we put around her waist and then hook it to the machine.   This lifts her under her arms so that she is standing on the machine.   It has wheels so the caregiver is then able to move the machine & Patsy with it to the wheelchair and then lower it to sit her back down.   As her mobility has decreased this machine has truly been a blessing for the caregivers and for Patsy.  It makes it so much easier & safer to move her.  

 

Portable Commode:  This is a light weight portable chair with a toilet seat.  That way every time Patsy has to go we don’t have to maneuver her into the small bathroom.   We can use the Sit/Stand Machine and transfer her to the commode – bringing it to her vs. her to it.  Patsy now has a urinary catheter so we only use this for bowel movements.

 

Eye Gaze Machine:  This is a tablet computer that is designed to allow the patient to use their eyes to control it.   We are just learning it now but it will allow Patsy to not only get on-line and do everything she would on a normal computer but also she can choose words & phrases to have the machine speak for her!   Just by using her eyes!   At this point she can still talk, though it is much slower and slurred so we know we need to be ready to use this machine soon.  Like all new technology it is a little daunting but we’ll get there!

 

Unfortunately transitioning to Hospice doesn’t allow us more in-home care for Patsy.  In case of an emergency they do allow for 5 days of in-patient respite care … but as you know our goal is to keep Patsy at home for the remainder of her time with us.   So we continue to rely heavily on volunteer caregivers.   We have supplemented the volunteers with four paid caregivers (three CNAs and an RN), but each have families & other jobs so their hours are limited.    And with one day of paid care costing up to $180 we try to save money by using volunteers first.  So whenever someone asks “what can I do to help?” my first answer is VOLUNTEER!  But there are many ways you can help & support the Martins:

 

1.  Volunteer to be a caregiver!   We have morning (8AM – 12PM), afternoon (12PM – 5PM) and evening (5PM – 8PM) shifts every day.   We are now also including shifts on the weekends.   If you are not comfortable coming alone you can pair up.   We can teach you all you need to know and usually there is someone around to answer any questions.   Ed still can’t use his one arm because of his shoulder surgery but with farming he’s in and out.  Curtis works nights so is usually there for a while in the morning taking care of all of the meals until he heads off to workaround noon.   Holly comes home from work between 5PM and 6PM.   The extra set of hands for these three is crucial.   Plus remember, Patsy can still tell you what she wants / needs!   Contact tasimmons78@gmail.com to learn more!

2.  
If you aren’t in the area / can’t volunteer to be a caregiver then please donate!  The out of pocket costs for the Martins remain significant.  While the money we’ve raised has helped it has only made a dent in the total of their out of pocket costs.  You’d be shocked what insurance and Medicare don’t cover.   Even a small amount is a big help!   You can donate on-line, send a check or drop your donation off at the bank in Shenandoah.  Details atwww.youcaring.com/Peace_of_Mind_for_Patsy.  

3.  Send letters!  Patsy loves to get the mail!   What do you say?   Just tell her what is going on in your life.   Don’t dwell on the disease … she gets the “I’m so sorry”, “you are so strong”, etc. constantly so just having a normal letteris a joy and a distraction from her struggles.   Right now as she’s learning to use her eye gaze machine sending a letter through the US post is easiest as her caregiver can open & hold up for her to read.   Remember, Patsy’s mind is not at all affected by the disease.  She’s as sharp as ever, she just can’t communicate or move as she once did.  

4.  
Schedule a time to come out and visit her!   We have to limit visitors simply because Patsy gets tired very fast but that does not mean that she doesn’t want them!   Just call the house and see what would be a good time /day.   Be aware that your visit probably needs to be limited to an hour or so and that we’d have to work around the times of the day that are easiest for Patsy.  

5.  Gifts:  While treats and food are a wonderful gesture know we have a full on Chef in Curtis who is always prepared to feed an army!   Ed is a diabetic so can’t have many of the goodies people bring.  Holly is allergic to gluten so also has to watch it.  And Patsy is now on all soft foods soeverything has to be blended.   If you’d like to make a gesture of a gift vs. a donation here’s some ideas:

     a.  
HyVee or Walmart Gift Cards
     b.  Massage gift certificate (Not only is it good for her but Patsy also loves them!       
Rick will come out to the house!  712.621.4554)
     
      c.  
Amazon.com gift card (Patsy reads a lot on her kindle)

      d.  
Send cards with old pictures, funny stories, and inspirational quotes – the little things are what touch Patsy the most.  

      e.  Gift your frequent flyer miles to Chuck to help with his trips home!   Delta, American & United all have flights from O’Hare to Omaha.

https://www.google.com/#q=can+you+gift+airline+miles+to+someone+else%3F

And of course one of the most important things you can do is just to be present.  As your busy days go by keep the Martins in your prayers and do not hesitate to reach out!    

 


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04/27/2014
by Alissa Hogan - Long time friend of the Martin Family

Sharing this email from Teresa Simmons to out volunteers.  As you will see we need more of you to volunteer, especially in May!!

 

------------------------------------------

The month of May is right around the corner. The openings that I have month-long are Tuesday mornings

 

Tuesday afternoons 

Tuesday evenings 

Wednesday morning 

Wednesday evenings 

Thursday evenings 

 

If you can commit to a certain time every week that would be fantastic, if not even once in a while would be greatly appreciated!! 

 

Now for the big event. Since I have been helping the Martins with scheduling people we have had Curtis have BOTH knees worked on, Ed's shoulder surgery, and NOW it's Holly's turn. 

 

On May 9th she will be having surgery on nose/sinus etc!!! So that day and the Monday - Friday after that, there is MUCH need for help!!! Some of the needs will be ~ ~ ~ ~ 

 

~~Someone to drive Holly to Bellevue that Friday to have her surgery and get her back home 

 

~~Someone to pick up Chuck at the airport the 9th (Friday) at 9:55 

 

~~Someone to care for Patsy that evening since Holly will be in no shape to do it 

 

~~Someone to take Chuck back to the airport on Sunday the 11th at around 5 or 6 p.m. 

 

~~Monday evening coverage 5:30 - 8:00 ish 

 

~~ Tuesday Holly needs to go back to Bellevue to doctor ~ so a driver 

 

~~Coverage for Patsy morning, afternoon, evening (Tuesday) the 13th 

 

~~Coverage for Patsy Wednesday (14th) morning, evening 

 

~~ Thursday (15th) Coverage afternoon, evening 

 

~~ Friday(16th) evening 

 

I know this email is very OVERWHELMING, but just image it from the Martins view! If you haven't heard Patsy has been transferred to the Hospice side of their services by the home health group. This time is stressful for them without having Holly out of commission for a while! 

 

PLEASE help the Martins help Patsy stay in the home she loves ~ VOLUNTEER!! Remember you can even come in pairs if that would make you feel more comfortable!!! 

 

Training is FREE!! 

 

Questions ~ PLEASE call!!! 712-246-9073 

 


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04/06/2014
by Alissa Hogan - Long time friend of the Martin Family
ALL CALL!!!

Holly is sick so we are in desperate need of volunteer caregivers!   Ed will be there but can't help because of his shoulder.  But he is a great teacher / guide to walk you through what is needed!   Patsy also can teach you!   It's not hard.  We have a machine that helps lift Patsy that makes it very easy to transfer her from bed to chair, etc.   

if you have ant free time this week PLEASE contact tasimmons78@gmail.com!   Morning, afternoon and evening (until about 8) are available!!!   
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04/02/2014
by Alissa Hogan - Long time friend of the Martin Family
A bit belated as it took us some time to gather up all of the information ... but we want to be sure that we thank as many of you as possible that supported the P'Sghetti for Patsy event last Saturday!  

Donors / Volunteers who made the event possible:

Chuck and Brian Maxine, Spaghetti Sauce
Ron Knight-Pizza Ranch, Spaghetti
Jim O'Hara, Cash
Elks Lodge, Building
Elks members, Cookies and Bars
Alan and LuAnn, the rest!


Those who came / gave at the event:

Those of you that gave cash that we can't name THANK YOU!
Nebel, Pamela or Gary
Perkins,  Pat and Richard
Linquist,  Margaret
Kirsch  Funeral Home
Emge,  Joseph DDS
Kirsch  Funeral Home
Scheib,  Lynn and Vicki
Scroggie,  Staci
Fienup,  Steve
Farwell, Randy and Elaine
Finley  Trucking
Pratt,  Janelle
Brownlee,  Helen
Anderson,  Robert
Tiemeyer,  Roland and Monica
Brodersen,  A T or D
Newman,  Thomas or Carol
Ketcham,  Bruce
Walter,  Mary Kay and Gary
Fox,  Sharon or Ron
Ferrel,  Carl & Artis
Davison,  Ronald and Suzanne
Wolford,  Derry
Lines,  Lowell
Boswell,  Monty
Spears,  Leroy & Karon
Cunningham,  Barb
Broermann,  Gregg or Elaine
Sparger,  Leroy or Elaine
Spencer,  charles and Connie
Carlson,  Stephen or Phyllis
Dreyer,  Carolyn or Bob
Nebel,  Pamela or Gary
Broyles,  Terry or Marsha
Baker,  Lowell and Cynthia
Carper,  David or Joelene
McCallan,  Perry and Karen
Walter,  Gerald or Dorothy
Kirchert  Electric
Gibson,  Don and Rita
Tackett,  David & Denise
Lorimor,  Brent and Kathleen
Chesshire, Howard and Sandra
Wiebold,  David & Kathleen
Johnson,  Howard and Christy
Liljedahl,  Dennis and Diane
Johnson,  Douglas
Shull,  David or Edna
Farwell,  Randy and Elaine
Hornbuckle,  CE or Carol
Fienup,  Steve
French,  Thomas or Marcy
Liljedahl,  Dennis and Diane
Palmer,  Lyle and Wendy
Brink,  Glen
Brink,  R or V
Broermann,  Gregg or Elaine
Anderson, Larry and Annabelle
Grossman,  Phil & Valerie
Palmer,  Larrie and Lynette
McGargill,  George or Laura
Zwickel,  George or Carol
Williamson,  Barbara
Jaeckel,  Richard Jr.
Hunt,  Dick and Lucille
Gibson,  Don and Rita
Braley,  Jean
Eno,  Mark or Carol

To all of you - thank you for your continued support & keeping that word spreading!   Please encourage people to come to this site and sign up for the RSS feed so that updates come straight to your e-mail.   We also try to keep up the Facebook Page & Group - both under the title "Peace of Mind for Patsy".   
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03/30/2014
by Alissa Hogan - Long time friend of the Martin Family

Drumroll ............

P'Sghetti for Patsy raised a total of $8,862! Thank you to everyone who came to the event. A special thank you to all of you who volunteered your time and donated auction items and baked goods. A HUGE thank you to Natalie Kirsch & Teresa Simmons for coordinating this event!

I'm missing a few & will add as soon as I have them but here is the list of those companies and individuals that donated auction items.

AgriVision Macedonia John Deere
Legacy Theater
Alliance Propane
Marlyn Offenbacher
Ashley McCall
Melinda Jennings
Bank Iowa
Mickey G's
Catie Lammers ~ Pampered Chef
Miller Building
Century Bank
Mondo's
Chef Curtis
M's Fine Dining
Cindy's Sweet Sensations
O'Reilley's
Cleta Fuhr
Orscheln
Dawn Graham Rice
People for Paws
Design Originals
R & S Woodworking
Doug Meyer Chevrolet
RocStop
Earl May Main/Store
Serenity Studio & Spa
Fitness 1st
Shenandoah Chamber
Gee Building
Shenandoah Floral
Get Framed
Sheridan Decorating
Godfather's Pizza
State Farm Insurance
Gowing Plumbing
Sunshine S Trailers
Healthy Tails Retreat
Tall Corn Ag
Heart & Soul Casey
VA Clinic
Heart & Soul Diana Gaffney
Valley News
Heather (McCall) Near
Heather McKeown Schultz
Helena
Howards
Hy-Vee
Jay Drug
JC & Mary Irvin
Karla Nelson Gray
Kirsch Funeral Home

Thanks to your efforts our total amount raised to date is $49,808! This is A LOT of money and definitely cause for celebration. At the same time our efforts must continue. ALS is a progressive disease that costs the patient / family an average of $500,000 to $600,000 out of pocket from date of diagnosis to time of death. Unfortunately there is no cure for this horrible disease. Your on-going support will make sure that the Martins can afford to take care of Patsy for the time she has left. As Teresa said last night, volunteer caregivers are just as crucial to supporting the Martins as our financial support. If you would be interested in learning more about volunteer opportunities please reach out to Teresa at tasimmons78@gmail.com.


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03/30/2014
by Alissa Hogan - Long time friend of the Martin Family
P'Sghetti for Patsy was a huge success!  We'll have totals on how much was raised shortly.  In the meantime, thank you to all that came out to support the Martins!   And a special thank you to Natalie Kirsch and Teresa Simmons for coordinating such a great event! 
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03/29/2014
by Alissa Hogan - Long time friend of the Martin Family

REMEMBER tonight from 5 to 7pm  P'Sghetti for Patsy fundraiser!  Spaghetti supper, silent auction and raffle at the Elk's Club ( 701 S. Fremont St., Shenandoah, Iowa)!   Please come if you can! If not you can find out how to help at www.youcaring.com/Peace_of_Mind_for_Patsy


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03/17/2014
by Alissa Hogan - Long time friend of the Martin Family

PLEASE SHARE!   


March 15th through April 15th purchases that you make will support Patsy Martin & her family!  

 

April & Crystal Eighmy are donating her commissions from ALL ORDERS for Pink Zebra, Thirty One & Pampered Chef!

 

PINK ZEBRA:  www.pinkzebrahome.com/aeighmy

PAMPERED CHEF:   www.pamperedchef.com

Instructions:

     Top right corner click on "go to our Beta site"
     Top left corner click on search for an existing party
     Enter my email address crystaleighmy@yahoo.com
     Select the fundraiser party and enjoy shopping!

THIRTY ONE:  www.mythirtyone.com/456019

From there you select to shop with April Eighmy or Crystal Eighmy either way it will count toward Patsy.

 

You can also e-mail orders to crystaleighmy@yahoo.com

 

Melissa Strunk is donating her commissions from any Tastefully Simple orders made via this link!

 

TASTEFULLY SIMPLE:  http://tinyurl.com/lw9wpar

 

If anyone wants to have a Taste Test party with Melissa she’ll donate an extra $10!  Contact her at  mmstrunk2000@hotmail.com

 

NOW SHOP TIL’ YOU DROP PEOPLE!!!!

 

For more information on Patsy & why this is such a great cause go to: www.yoycaring.com/Peace_of_Mind_for_Pats

 


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03/15/2014
by Alissa Hogan - Long time friend of the Martin Family

MARCH 29th P'SGHETTI FOR PATSY

 

5PM to 7PM at the Elk's Lodge in Shenandoah we will be having a free will donation spaghetti dinner and silent auction to support the Martins!  All are welcome!  We are still looking for volunteers both to work the event and also to help with the preparation.   We are looking for 12 - 14 volunteers to help serve, clean and take money at the event.  We also need 30 to 50 pies and cakes so if you like to bake we need YOU!   In addition we still need items for the silent auction!   Please contact Natalie Kirsch at nataliekirsch@hotmail.com or 712-215-3326 to help!


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03/15/2014
by Alissa Hogan - Long time friend of the Martin Family

PURCHASES SUPPORT PATSY!!!

 

March 15th through April 15th purchases that you make will support Patsy Martin & her family!  

 

Crystal Eighmy is donating her commissions from ALL ORDERS for Pink Zebra, Thirty One & Pampered Chef!

 

Pink Zebra:  www.pinkzebrahome.com/aeighmy

Thirty One:  Link broken – will post Monday!

Pampered Chef:  Link broken – will post Monday!

 

You can also e-mail orders to crystaleighmy@yahoo.com

 

Melissa Strunk is donating her commissions from any Tastefully Simple orders made via this link!

 

Tastefully Simple:  http://tinyurl.com/lw9wpar

 

If anyone wants to have a Taste Test party with Melissa she’ll donate an extra $10!  Contact her at  mmstrunk2000@hotmail.com

 

NOW SHOP TIL’ YOU DROP PEOPLE!!!!

 


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03/06/2014
by Alissa Hogan - Long time friend of the Martin Family

3/29/14:  P'Sghetti for Patsy Volunteers Needed!  10-12 volunteers to help serve and clean; 1-2 taking money.  We also need between 30-50 pies and cakes to feed between 200-400 people. WILLING TO HELP?  Contact Natalie at nataliekirsch@hotmail.com or 712-215-3326. Thank you!!! 


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03/03/2014
by Alissa Hogan - Long time friend of the Martin Family
BEGGING!!   We are still in need of a caregiver for Patsy tomorrow (3/4) from 12:30 to 5:30!  Ed will be there but can't do a lot of the physical part because of his recent surgery.  Patsy and Ed are both wonderful at showing you what needs to be done and how to do it.  PLEASE help us spread the word to others in the Shenandoah / Clarinda area!   Contact Teresa Simmons at tasimmons78@gmail.com or 712-246-9073!
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03/03/2014
by Alissa Hogan - Long time friend of the Martin Family

URGENT!   We still need a volunteer caregiver for Tuesday 12:30 to 5:30pm!!!   Please contact tasimmons78@gmail.com! 


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03/02/2014
by Alissa Hogan - Long time friend of the Martin Family
SAVE THE DATE & SPREAD THE WORD! 

P'SGHETTI for PATSY!

Silent auction and free will donation spaghetti supper
Saturday, March 29th, 2014
Elk's Lodge - Shenandoah, Iowa
Starting at 5 PM
All proceeds go to support the Martin Family!

Volunteers will be needed! If you are interested in volunteering e-mail Natalie at nataliekirsch@hotmail.com
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03/01/2014
by Alissa Hogan - Long time friend of the Martin Family

Still trying to finish up this week's volunteer needs in caring for Patsy!!

 

Tuesday 12:30 to 5:30 (ESSENTIAL)

Tuesday evening 5:30 until Holly no longer needs you (7ish) (WOULD BE NICE)

Wednesday evening 5:30 until Holly no longer needs you (7ish) (WOULD BE NICE)

Thursday afternoon 12:00 until 5:00 (ESSENTIAL!!)

 

Contact tasimmons78@gmail.com!


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03/01/2014
by Alissa Hogan - Long time friend of the Martin Family

OPERATION DATE WEEKEND FOR HOLLY & CURTIS:  Okay people we need your help!   With working different shifts and caring for Patsy it has been go go go for Holly and Curtis without any down time for themselves or time together!   So we are planning a respite for them!   March 8th is our date because it is one of the few times they are both off work at the same time!   We have a place for them to stay overnight but we need volunteer caregivers for Saturday day & evening (until about 9pm).  Chuck comes home that day so we are also looking for a volunteer to pick him up at the Omaha airport and drive him home to Shenandoah.  His flight lands at 5:50pm.   We'd also love a volunteer caregiver on Sunday during the day to be an extra set of hands for caring for Patsy.   If you can help please contact Teresa Simmons at tasimmons78@gmail.com! 


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02/28/2014
by Alissa Hogan - Long time friend of the Martin Family
We continue to look for volunteer caregivers for Patsy.  Weekday and weekend hours are available.  Morning, afternoon and evening shifts too!   I am not a nurse so I'll admit I was nervous at first but it's easy and I personally love my time there.   They have all the equipment to make it easy.  Even a machine that lifts her so you don't have to!  Patsy is still able to communicate enought to walk you through every step.  Right now Ed is around too to help teach you. He can't help at all because of his recent shoulder surgery... The littlest tear and back to surgery he would go.   You could also ask to have your first time volunteering when Curtis or Holly are home.   We are adding on more support to give them a little breathing room.  Taking care of Patsy is a 24/7 hour job so even just an extra set of eyes helps them relax a bit and de-stress.  Even if you can only help once in a while it still helps!  

If you are interested but aren't convinced I'd be happy to talk to you confidentially and tell you exactly what it is like!  Reach out to me at alie.hogan@hotmail.com.  Ready to sign up?  Contact Teresa Simmons at tasimmons78@gmail.com!
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02/23/2014
by Alissa Hogan - Long time friend of the Martin Family
We need a volunteer this Tuesday from noon until Holly gets home Fom work (5pm ish)

We'd also like to find volunteers to come at 5pm each evening this week to help the Martins.  It would be to an extra pair of hands and feet for Holly who would be getting home from working all day. It would not be a late night!
    If you'd like to volunteer your time this week or in the future please contact Teresa Simmons at tasimmons78@gmail.com.  Our need of volunteers continues to grow so no matter how little time you can give please at least reach out to get on our "all call" email list!!
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02/22/2014
by Alissa Hogan - Long time friend of the Martin Family
Got some free time today?   We are looking for a volunteer to come out to the Martin home this afternoon and evening to be an extre helping hand.   Ed and Holly are on their way home from the Nebraska Medical Center now.  Ed is doing well but his surgery means Holly has two patients to care for and Curtis is at work until late.  No medical experience needed.  I have none and have been able to care for Patsy the last two days quite easily.   I'll be here until about four and Holly will be here all evening.  Either of us can show you the ropes and most of the care needed is just being there to help with little things since Patsy isn't able to do them herself.   Poor Holly is exhaustes after two days and nights at the hospital ... Your help will be greatly appreciated!!  

If you are interested give me a call at the Martin home at 712.246.2967!!

if you can't help today but want to volunteer your time to help in the future please reach out to Teresa Simmons at tasimmons78@gmail.com.  



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02/10/2014
by Alissa Hogan - Long time friend of the Martin Family

Sharon McAlpin had a great idea!  Let's all send valentines to Patsy!!   The old fashioned way of course... Via snail mail!   The address is 1465 220th St., Shenandoah, IA 51601-4562.  If you include a donation make out your check to "Patsy Martin benefit account" & remember no donation is too small!!!


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02/08/2014
by Alissa Hogan - Long time friend of the Martin Family

Unfortunately February will be a month of surgeries for the Martin Family instead of Valentines.

Patsy goes in on the 10th to have a feeding tube placed in her stomach. She is still able to eat normally. While chewing can be difficult the swallow study showed she is still doing well. So the family & caregivers make sure to cut up her foods very small and lean more and more towards softer options. Often in ALS patients it is suggested that the surgery to place the feeding tube happen before the patient needs it. This is because of the risk of surgery ... the healthier the patient the safer the surgery. Waiting until the patient needs the tube means waiting until he or she is much weaker. Patsy initially didn't want the tube but after learning more about how it can be used for medicine to make her comfortable when she can no longer take pills or swallow she decided it was worth it. It will still be up to her if she chooses to 'eat' through it when the time comes.

Ed goes in on the 20th for a full shoulder replacement. (So much for the "my shoulder is fine" claims!) Of course he gave the surgeon a hard time at his pre-op appointment claiming that he planned to drive himself home from surgery. Gotta love our Ed!

Thankfully Curtis is done with his surgeries and both knees are on the mend! We are happy to report he returned to work last week. He's still a little sore ... won't be running any marathons soon but the family is sure happy he's back in the kitchen cooking! Especially Ed ... who complains loudly about how Holly put "weeds" (i.e. parsley, spinach and other greens) in the food all the time.

In January there have been a lot of changes. Patsy has moved into Chuck's bedroom now in a hospital bed. It is much more comfortable for her since it allows for so much variety in adjusting her position. This is more and more important as she continues to loose her mobility. The power wheel chair arrived a week ago. It is an impressive piece of machinery! If you've never been around one it is more like a car than a chair. HEAVY!! No way you can push it on your own or even shift it, instead it is made to drive. Now learning to drive it is a bit reminiscent of learning to drive a car ... remember not being able to press the accelerator slowly enough that the car didn't jerk forward? Same thing. The controls are very sensitive so it takes time and practice. Thankfully Ashley, Patsy's Home Health Aide, was able to turn the controls so that the sensitivity is on the lowest setting - as with the speed! That has made it much easier as everyone learns. Patsy can drive it with her left hand and there is also a control so that someone can drive her by standing behind the chair. It will take a while to get comfortable with it but we'll get there! The chair also is fully adjustable. Patsy can choose how she wants to position her legs and the back, even reclining fully! It also raises up so that transferring her into bed is easier. When the time comes that she can't control it with her left hand there is a feature we can order that will allow her to control it by moving her head! The technology is incredibly impressive.

Speaking of Patsy's Home Health Aide, the family feels very blessed to have found Heartland Home Health Care & Hospice. Everyone has fallen in love with Ashley, the CNA that comes Mondays, Wednesdays and Fridays for a couple of hours to help. She gets Patsy up out of bed, helps her take a shower, and helps her with her stretching exercises. She naturally brings with her a ray of sunshine and of course earns even more points with us as she learned to sass Ed right back on day one! Ashley and the other professionals from Heartland have been a Godsend in explaining everything in layman's terms and showing us how the equipment can be used to make things easier for the caregivers. The equipment is impressive but if you have never used it ... well, it is intimidating! (PS - picture of Ashley will be uploaded soon ... pictured as she protected "poor mistreated Gracie" as Ed tried to kick her out of his blue recliner. WE LOVE ASHLEY!!!)

We are interviewing for a Home Health Assistant to fill in the hours that are most difficult to find volunteer caregivers for Patsy. We have some strong candidates and hope to make a decision soon. As a health care Recruiter by trade I did the first round of interviews & soon the family will decide who they will interview in preson. Understandably they've been busy prepping for surgeries. Thankfully Teresa Simmons and the wonderful volunteer caregivers have come through and have been able to cover all the hours needed!

Keep the Martins in your prayers - especially on the 10th and the 20th!

- A. Hogan


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01/12/2014
by Alissa Hogan - Long time friend of the Martin Family

PLEASE SHARE!!  We are looking for the right person to help care for our Patsy!!

Location: Shenandoah, Iowa

Opportunity: Part Time Home Health Assistant

Days Needed: Tuesdays, Wednesdays, Thursdays
Hours per week: 12 to 18
Hours of the day: Varied but most often from 12:30 to 6:00PM
Additional days / Hours may be available as disease progresses.

Pay: $7.50 to $15 hour, depending on experience & education

Wonderful family seeking private pay employee to help provide for daily care needs of 71 year old female with ALS* to include:

- Transfer from bed to wheelchair
- Toilet assistance
- Housekeeping
- Meal preparation

Note: ALS is a progressive disease so needs will change over time.

Qualifications:

- MA, CNA, LPN, RN strongly preferred
- Previous experience caring for mobility challenged / fragile adult or senior required
- Must pass complete background & reference check

Will consider job sharing arrangement if needed to find best fit!

Phone interviews will start week of January 27th. Finalists will meet in person with family. Email your resume to alie.hogan@hotmail.com.

*Learn about ALS: http://www.alsa.org

 


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01/11/2014
by Alissa Hogan - Long time friend of the Martin Family


A Belated New Years Update from the Martins:
 
We would like to wish you & yours a very happy 2014!  As you all know 2013 has been a rough one for us & in 2014 this will continue.  While we regret that this update will not have the upbeat tone of the usual holiday letters / cards we decided it was important to fill all of you in.   We also believe it is important for you to know & understand how we have used the generous donations you have provided!

So ... where to begin?  First of all we want to express our extreme gratitude at the outpouring of support from all of you!   Learning that Patsy has ALS and facing such an impossible journey has been a little easier because of your prayers as well as your emotional and financial support.   We all try to plan for rainy days and specifically for retirement but it just isn't possible to plan for something like this.  Not only the emotions that go with it but the awful decisions, the home renovations, daily care ... it's nothing we could have ever imagined. 

The home renovations are almost done.  We chose to do this because Patsy's wish is to remain in our home for the remainder of her time with us.   To make the home safe and functional we had some real work to do!   The most obvious being that both our front and side doors had stairs.  We've had a ramp built in the front and have removed the step up in that entry.  We also widened the doorway so that it is wheel chair accessible.  

The second issue was our bathroom.  It was small and crowded, with no room for a walker or wheel chair and full of hazards for Patsy.    To make it functional we had to go through the wall into one of the bedrooms, making that room smaller & the bathroom bigger.  We got rid of the tub and now have a specific shower kit that is designed for a wheelchair. The toilet also was replaced with a taller one to make it easier & the ALS Association has connected us with a "shower chair" that is basically a plastic wheelchair where the seat is like a toilet seat.  Therefore it can be rolled over the toilet and then into the shower, making it much easier for both Patsy and the caretaker bathing her.  We've now tucked the storage cabinet and the sink in the opposite wall so that they are tucked aside and there is plenty of room to manuver.   We replaced the floor in the bathroom and kitchen, leveling it so that it is all flush for a wheelchair - just a very small incline to get into the shower ... which is tougher to push over than you can imagine!   But even with this small hurdle it is so much safer & more functional!   

The third item was to think ahead for when Patsy must be in a hospital bed.  In the room made smaller from the bathroom renovations we were able to put in a small closet for storage and upgrade the electricity so that we are ready for any medical equipment necessary.  We thought this would be farther down the road but decided to get it all done at once.   Now we are glad we did because it turns out that Patsy needs a hospital bed now... It arrives next week.  One great thing about the design of the house is that there has always been a door between the two bedrooms.  So even now that Patsy is moving to sleep in the other room that door can be open so that she and Ed are still together.  

The fourth issue was that come tornado season we would have no way for Patsy to get down into the basement.   Therefore we have installed an electric chair lift that we can sit her in and move her downstairs if this becomes necessary.   It won't be easy to get her in it but it was our only option other than an elevator and that just wasn't realistic.  

We are happy to say that we found out we won't have to replace the carpet in the living room as we'd originally thought!   Eventually it will need replaced as the wheel chair will damage it, but during the assessment the representative assured us that other than tracks from the chair it will be able to go across the carpet.  So we can save the expense of pulling up that carpet & putting down the same flooring as the kitchen / bathroom / bedroom until later.  

In total the renovations so far have come to over $45,000.  Because of your generous donations (as of 12/30 at $34,765!) a great deal of this has been covered.   We can't even begin to thank you enough.  It is amazing how fast those costs add up!   The final phase will be cement outside of the house connecting the driveway with the ramp so that it is safe / level.  Unfortunately we ran out of time before winter hit so we'll have to wait until spring to complete this.   We are very thankful to have a concrete company (DC Concrete) out of Omaha that has agreed to donate their labor & equipment!  Materials should run us about $800 and there may be a company willing to donate some of that as well!  Cross your fingers & say a prayer!

Our next hurdle is day to day care.   As you know, Patsy's daughter Holly & her significant other Curtis moved into the home last fall to help.   Well ... we've had our share of Murphy's Law since then as what can go wrong DID go wrong!   Curtis was injured in a motorcycle accident and has been on medical leave from his job.   He's had surgery on both knees?  Sadly the amount of time he's had to take off work has eaten up his vacation time & medical leave time so we are relying on the kindness of his coworkers donating their time to keep that paycheck coming in.  We are so blessed at the caring team he works with at Glenwood Resource Center!  Ed made it through harvest but his shoulder has continued to bother him.  We've had tests done and just received the results to confirm that he has a torn rotator cuff.  This injury makes it impossible for him to help lift Patsy / participate in much of the caregiving.  (Doesn't stop his jokes & sass though so don't worry ... we are good there!)   Holly continues to commute into Papillion for her job.   It's an exhausting life for her right now as she works full time, tackles all of the household chores and serves as primary caregiver on nights / weekends for Patsy.  (Not to mention also caring for Ed and Curtis when needed.) There simply isn't time for anything else.  She adores her job so does not want to risk it by taking too much time off.  She is saving her FMLA benefits as long as possible.  Chuck gets home as often as he can but we really want him to be able to remain in Chicago as he loves  the school he teaches at there.  He is eligible for FMLA but just like with Holly we want to save that as long as we can since we know at some point Patsy will need round the clock care.   

Speaking of Patsy's care ... so far we have been able to manage because of a group of wonderful volunteers coordinated by Teresa Simmons.   They spend time at the farm to be sure that Patsy has what she needs.   Early on this was a pretty fun job as it basically entailed being there to be sure that Patsy didn't fall - so not a great deal of work and lots of time chatting with Patsy and of course getting love from Gracie, Holly's dog.  Miss Gracie of course convinced every one of the caretakers that they were her favorite!   We are sad to say that now care is beyond what many of the volunteers are comfortable with providing.   Circumstances for several volunteers have changed too so we are down to a handful.

At our last visit with the neurologist in Omaha ("ALS Clinic") we confirmed what we'd already seen on a daily basis ... Patsy has had a steady & significant decline.   She continues to stand & walk with a walker but on a very limited basis.   Her hands and arms no longer will allow her to type or write.  Eating is much more difficult in terms of both the movements of grasping the utensil as well as the movement of getting it from plate to her mouth.  The doctor recommended a "no chew" diet so we are quickly trying to shift how we prepare meals for Patsy.  She'll have to have things like smoothies, soups, and other very soft items since the effort chewing is enough to exhaust her.  We have had a swallow study done to determine how well she can do this without choking / aspirating.  This leads us to the incredibly difficult decision of if Patsy will choose to have a feeding tube.   Getting in and out of bed is a huge struggle now so we've ordered the hospital bed that will have the feature of being able to electronically move her into sitting position.   The ALS Association has provided us with some other equipment that will help with transfers from the bed to the wheel chair.   The shower chair I mentioned earlier is extremely helpful with bathing and making sure Patsy is clean after using the toilet.  At a later date we will have to consider a catheter but we aren't quite there yet. Patsy can still talk, though her reaction time and speech have slowed.  She gets tired quickly as it takes significant effort to do much of anything so she has a pattern of a morning nap and an afternoon nap to help.   The hospital bed will also help as sleeping in a position where her head is elevated will help with her breathing.   Patsy also struggles with pain.  As the nerves die they send inconsistent signals to her muscles, causing painful cramping and aches.   The wheelchair we have ordered will be a great help.  We have purchased a wheel chair accessible van, sadly another expense we had not anticipated.

Heartland Home Health & Hospice now comes in to assist us.  We get 3 visits from an aide a week for bathing and stretching and a pt / ot therapist on the other 2 days for stretches for the home health plan.  Plus nurse and social work visits weekly and as needed.  The services will increase when Patsy goes on Hospice but we need to wait a bit for that as Medicare does not cover some equipment once a patient goes on Hospice. We need to make sure we have what we need first.  Plus Hospice requires a "steady decline" and there are some tough decisions we need to make that will determine if we are at that point yet.  As you may know, ALS does not have a cure.   We have had to face the fact that we will lose Patsy.  The question is how long we have and how the disease will progress.  No two patients are alike so even the specialists can't tell us when / how things will happen.   Patsy does have a choice in terms of what medical intervention she wants.   She has already made the decision that when the time comes she does not want any artificial breathing assistance.   As you read above, we are close to having to make the decision if she wants a feeding tube.   If she chooses not to do this then Hospice will kick in sooner as when she cannot eat on her own we won't have much time.  

As you can imagine we are each going through what the professionals call the "stages of grief", and each in our own way.   Denial / isolation; anger; bargaining or the "if only's"; depression; and finally acceptance.  We each go in and out of each one depending on the moment.  While acceptance is a really tough one, Patsy is a person of great faith and so she knows that at the end of this journey is not the end of her.  She will be with her parents and her brother who passed just recently.   She won't have to miss us ... we'll have to miss her.   We of course wish we had more time but we also don't want her time left to be miserable.   We also wish we had more time to spend with all of you.   Things like going to a movie or out to eat, seeing friends or having people over to visit are just not realistic now.   Know that we feel your support, your love and your prayers.  We cannot thank you enough.   

While this has been a heart wrenching time it certainly has reminded us what is truly important in life.   
As you look at 2014 take a moment to appreciate the gifts in your life.  Your family, your friends, your health.   It is the little blessings in life that mean the most.  We hope that 2014 is filled with millions of those little blessings for each of you and that you cherish every single one.  


- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 

A note from fundraising coordinator Alissa Hogan ... 

While I wish I could say that the Martins no longer need additional financial support from fundraising efforts I cannot.  Like many, they make too much to qualify for Medicaid or any public assistance but too little to handle all of these out of pocket costs.   The reality is that without enough volunteer caretakers we have to find and hire a home care assistant.  At somewhere between $10 and $20 an hour (depending on the level of clinician hired & level of care needed) the costs of care is going to add up fast.   This will be 100% out of pocket for them and from what we have pieced together 12 to 18 hours a week.  
Our goal now is that with additional fundraising that we can continue to keep Holly and Chuck at the jobs they love, saving their FMLA benefits for when Patsy requires 24/7 care.  Ed wants to continue farming so they don't want to sell the farmland if we don't have to and his income remains necessary.  

How can you help? 

1.  If you are local and are able to volunteer your time to be one of Patsy's caretakers please contact Teresa at tasimmons78@gmail.com.   Note that volunteering means doing household chores as well as helping care for Patsy.   This now requires a level of physical strength (helping to lift and support her) as well as being willing to help feed, dress, and ensure that Patsy is properly wiped after using the toilet.   You don't need to be a medical professional and we can make sure you are shown how to use any equipment you are unfamiliar with.   The more people who are willing to volunteer their time the less we will have to spend on private care!  We prefer that volunteers choose a consistent day / time each week that they will be there so that we can stay consistent with scheduling & ensure we have no gaps in care. Right now our need is Tuesdays, Wednesdays and Thursdays from approximately 12:00 to 6:00 PM.  We also need people who would be willing to be in an "on call" list for any time that a volunteer is sick or can't make it for whatever reason.  

2.  Simply ... your donation of money remains crucial!  You will find all of the different ways you can donate always up to date at www.youcaring.com/Peace_of_Mind_for_Patsy. No dollar amount is too small!   

3.  Keep up to date by subscribing to the RSS feed on the www.youcaring.com/Peace_of_Mind_for_Patsy site!   That way you'll be in the know for any events or other activities in the future!!! 

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01/05/2014
by Alissa Hogan - Long time friend of the Martin Family
Dear Friends of the Martins', 

This an all call looking for people that would be willing to help care for Patsy. As mentioned before, they have called on a Home Health agency to help with Patsy's care, but we still need 2 volunteers a day to keep it from being too long of a day for one person. 

If you know of anyone that can help out, PLEASE let them know of this need. The family really needs our help. Holly doesn't want to use her time off from work yet, Curtis has his surgery Wednesday, and Ed might be having some shoulder work done sometime! 

This week we still need volunteers for:

Wednesday 9- 1 and 1-5 ish 
Thursday 1 - 5 ish 
Friday 1 - 5 ish


This will be an ongoing need so please feel free to copy and paste this message to (or forward it) to friends in the Shenandoah area that may be able to help or find the help that we need! 

At this point, they don't need to know the Martins ~ just want to help. We will rely on the people referring them to vouch for their character. 

Please find it in your heart to help in some way!! 

Thank you, 

Teresa Simmons 
712-246-9073 
tasimmons78@gmail.com 

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12/05/2013
by Alissa Hogan - Long time friend of the Martin Family
An update from Patsy...

---------- Forwarded message ----------
From: Patsy Martin <martin.patsy9@gmail.com

PALS Update After Thanksgiving 2013

Thanksgiving went well…really big group Saturday before with Curtis’ children, mother, sister, and Harold and Shirley Anderson, and Brent and Alie Hogan. Curtis and Holly fixed a marvelous feast.  We had just our family on Thanksgiving Thursday…quite relaxing.

 I have much for which to be thankful!

I am thankful to have been blessed with Ed as a life partner.  We are thankful for Charles, Holly, and Curtis Paulson, our son-in-love.

I am thankful that Chuck was here for a week acting as my caregiver.  He took me to see Aunt Ennie  in Shen and Jim Petersen in Red Oak.  I regret my illness most because I can’t care for Ennie and Jim, nor can I visit my brother Jack because of the ten stairs to enter their home.

I am thankful Holly and Curtis chose to move in with us to cook and clean and give good care to us both.

I am amazed and thankful for my agent Teresa who coordinates my caregivers.  I am so thankful for my caregivers who give me care and attention and love.  I am thankful for the hundreds of cards, calls, and e-mails I have received.  Believe me … your love and concern and declared prayers help.

I am humbled and thankful for the donations through Peace of Mind website managed by Alissa Swartz Hogan.  I am thankful for the fond memories of the benefit in Clarinda handled so well by previous students-- Karen, Missy, Michelle, Austin, Kam… and so many others who helped or attended. I am thankful for my flower garden which I enjoy every morning…and to those who slaved over it.  I am thankful for the renovations to make our home more accessible.

I am  thankful that ALS waited to attack me when I was seventy instead of sooner.

I am thankful I was able to enjoy raising our two children, Holly and Charles.

I am thankful I was able to practice my chosen profession for forty years.

I am thankful for my retirement years which I spent studying ministry development, taking local unit, county, and district officers with American Legion Auxiliary—Presidency at all levels.  A week before our trip to Mayo, I had the honor of being installed as Department of Iowa Chaplain.  I am thankful that I spent quality time volunteering for church, hospital, museum, and Shenandoah Veterans Clinic.

Although the battery running my body is weak, I am thankful I can still be thankful!

 

-- 
Peace from Patsy
SHS Grad 60, UNI Grad 64, Charles City 64-66 and Clarinda 66-09 English Teacher, Husband Ed, Children Charles and Holly and her Curtis
Retired and Stumbling with ALS 
2013-2014 American Legion AuxiliaryIowa Department Chaplain

Prayer is not a "spare wheel" to pull out when in trouble;                                                    
  it is a "steering wheel"  to stay on the right path throughout life. 


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11/14/2013
by Alissa Hogan - Long time friend of the Martin Family
PLEASE SHARE!!!!!

PEACE OF MIND FOR PATSY BRACELETS NOW AVAILABLE AT: (Suggested $5 donation per bracelet)

Kirsch Funeral Chapel
405 West Thomas Ave.
Shenandoah, IA 51601

AND

Shenandoah Sanitation  
1207 W. Ferguson Rd.  
Shenandoah, IA 51601

HUGE THANK YOU TO THE SCHARP & KIRSCH FAMILIES!!!!!!

We are in process of nailing down places in Clarinda where you can stop by & get them too!  More to come on that soon.  

SPREAD THE WORD AND GO GET 'EM!!!!  THE COSTS TO ORDER / MAKE THE BRACELETS WAS DONATED SO ALL DOLLARS GATHERED GO DIRECTLY TO SUPPORT PATSY MARTIN & FAMILY!

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11/13/2013
by Alissa Hogan - Long time friend of the Martin Family
BRACELETS WILL BE AVAILABLE SOON AT:

Shenandoah Sanitation
1207 W. Ferguson Rd.
Shenandoah, IA  51601

A HUGE THANK YOU to Jerry & Vicki Scharp who volunteered to help us sell them so you can easily just stop by & get yours!  Suggested minimum donation of $5 per bracelet.   Vicki will be picking them up from me today so start watching for them there as early as tomorrow!  

ANY OTHER BUSINESS O...WNERS IN SHENANDOAH OR CLARINDA WILLING TO DO SOMETHING SIMILAR PLEASE CONTACT ME:  Alissa Hogan 402-681-1956   We'd also be game to send out sign up forms / bracelets to anyone who would be willing to help sell these similar to the way one would girl scout cookies.  I'm not beyond door to door to help our Patsy people!    - Alissa

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11/07/2013
by Alissa Hogan - Long time friend of the Martin Family
I had three moments yesterday that proved again to me that you NEVER KNOW where help / support will come from:

1. My husband's Aunt & Uncle (Maureen & Steve Henry) donated to Patsy. The don't know her so this was just b/c Maureen saw my posts on FB and knew it meant the world to me.

2. I'm in an exercise class & a woman that I've only known for 8 weeks (Regina Huerta) saw my post & came up to
 me last night saying "you got 'em?" pointing to her wrist! She was my first official bracelet sale and she barely knows me let alone the Martins! Wow!

3. A coworker called me yesterday. Her mother had just been diagnosed with ALS and she'd heard from another coworker that I was going through this too!! We agreed to support each other as much as we could through the journey.

KEEP THAT WORD SPREADING PEOPLE! To everyone b/c you never know who will step up to the plate for you & who you can help with your experience. - Alissa

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11/05/2013
by Alissa Hogan - Long time friend of the Martin Family
TIME TO RAMP UP FUNDRAISING AGAIN!   The renovations have already devoured the majority of the $20K we've raised.  In an effort to get us going again I'm selling awareness bracelets!  They are blue with white writing and say "FAITH * HOPE *... LOVE * FIGHT ALS! *" on the top line and "I wear blue & white for Patsy Martin  www.youcaring.com/Peace_of_Mind_for_Patsy" on the second line.    Minimum donation of $5 per bracelet.   Checks should be made out to "Patsy Martin Benefit Account" and sent to: Alissa Hogan 5114 Underwood Ave, Omaha, NE 68132-2238

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11/03/2013
by Alissa Hogan - Long time friend of the Martin Family
Full article!   Kyle Munson really captured the mix of class & sass that is our Patsy!  

http://www.desmoinesregister.com/article/20131103/NEWS03/311030058/Munson-Chaplain-prays-for-others-first-even-after-ALS-diagnosis?News



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11/03/2013
by Alissa Hogan - Long time friend of the Martin Family
A BIG BIG BIG thanks to Lori Brockman, Pat Bogdanski, Bruce Anderson, Mat Bertholf & his son Griffin for helping Holly & I paint this weekend!! YOU ROCK!!!
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11/02/2013
by Alissa Hogan - Long time friend of the Martin Family
VIDEOS OF PATSY!   Story coming in the Des Moines Register as well so watch for it!   (Note: this was filmed a while back & unfortunately her mobility is such now that she can't pick up little Gidget (cat) as she does here or move as freely with her hands / speech ... but nothing is taking that Patsy spark!  It's here in both of these videos & still there in those eyes and that great smile!) 

http://www.desmoinesregister.com/videonetwork/2796833980001/Retired-teacher-Patsy-fights-ALS

http://www.desmoinesregister.com/videonetwork/2796873642001/-Finger-prayer-helps-Patsy-cope-with-ALS

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10/29/2013
by Alissa Hogan - Long time friend of the Martin Family
Tomorrow is Patsy's birthday!!!  Let's blow her away with love / wishes!  Post on the Comments page here & we'll make sure she sees them!  Also please remember that even though the event is over the fundraising efforts are still going so keep that word out there!  

https://www.youcaring.com/Peace_of_Mind_for_Patsy
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10/28/2013
by Alissa Hogan - Long time friend of the Martin Family
A POST FROM PATSY TO HER FRIENDS ON FACEBOOK:

PALS Update October 27, 2013

In reading material about ALS, a person with ALS is pALS; therefore, since I am Patsy with ALS, I am now PALS . I used to be just a Patsy --- or even lots of others’ Patsy – but life offers surprises. Into all lives a little rain must fall… ALS is a full-blown, run- for -cover storm. I now think Into all lives a little PAIN must fall, I am desperately fighting to stay afloat. I am not really in pain as such … except for pain left over from falls. Ed’ solution: Don’t do anything unless you can do it sitting down!

Be thankful for every simple physical act you perform – standing without falling, washing hands, writing notes, opening pill bottles and juice bottles, opening letters, dressing or undressing, brushing teeth or hair, cleaning eyeglasses, typing easily…you probably have the idea by now. As Patsy, I took these simple acts for granted; as PALS , I miss doing simple deeds. Patsy still exists, but PALS is limited. I want to go and do things, but I can’t because I always have to take me with me.

Renovations are being made on both ends of our home…handicap accessible bathroom on north and “my personal square gazebo and ramp” on the south. We hope work will be done this week … 

Ed, Holly, Curtis, and I attended Northwest Homecoming yesterday…I enjoy attending and watching previous student Hummel play. I would attend all games, stay til the final buzzer, and greet the team on the field afterwards, but I can’t because I have to take me with me!
I am thankful for my family, care givers, and many friends. Ed and I would never have needed any extensive remodeling—Edward had us set for the rest of our lives. ALS moved in and needs changed. In spite of my limitations, I am very happy. I still laugh….

My prayer for myself is “God’s will be done.”

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10/28/2013
by Alissa Hogan - Long time friend of the Martin Family
No plans this Saturday? Construction is almost done at the Martin home! We are gathering a team of volunteers to help paint (materials provided) and clean. Starting 9AM this Saturday! RSVP to tasimmons78@gmail.com or sign up at  https://alsa.lotsahelpinghands.com/c/708606/login/
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10/20/2013
by Alissa Hogan - Long time friend of the Martin Family

Fundraising Event at Clarinda High School on 10/12/13

Sorry this post is belated – it’s been a busy week!   The event organized by Patsy’s former students was a great success and doubled our fundraising efforts thus far pushing us to that 20,000 mark!  

As soon as Patsy, Ed, Chuck and Holly walked in the cafeteria they were warmly greeted by Ed’s sisters & their families.  His Aunt & Uncle and cousins surprised them by attending as well.  Some all the way from Denver!   These special guests included:

  • Darlene Carlson
  • Chris and Sharon Davis
  • Charlotte Butterbaugh and her son Todd Butterbaugh
  • Kathy Weaver
  • Russell and Vernice Brink
  • Roger and Sherrie Brink
  • Tim Coursey
  • Ken Martin

Special families in attendance:

  • Jim and Ann O'Hara (Holly’s Godparents) their daughter, Heather O'Hara Tomb (one of Chuck’s dearest friends)
  • Shirley and Harold Anderson (Chuck's Godparents),  their daughter, Lori Brockman and their granddaughter, Jessica Anderson.
  • Karl and Suanne Hastie (Co-Workers of Curtis at Glenwood Resource Center) and their daughter in law, Stacie. 
  • Mary Josephson and her daughter Emily (another dear friend of Chuck’s).
  • Pullen, and her husband Gary.  (Shirley moved to the high school with Patsy and they taught in a double wide trailer for several years together!)  
  • Elaine and Gregg Broermann (Elaine was Holly & Chuck’s swim team coach, and has been their neighbor since we were children. Chuck and Holly grew up with their children.)
  • Duane Hartstack was in the first class Mrs. Martin taught at CHS.  His son, Kam Hartsack, was one of the auctioneers for the event.  Kam was in the last class Mrs. Martin taught before retiring. 

We’d love to share stories from the event & pictures so if you have any please forward to alie.hogan@hotmail.com!  


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10/04/2013
by Alissa Hogan - Long time friend of the Martin Family
Can you help??   We need an enclosed trailer FAST!  We've got a team of muscles that are coming out to the Martin house tomorrow to move out the furniture / items from their guest bedroom.  We need someplace to store it during the renovation so that it isn't in the way - we've got ENOUGH trip hazzards for Patsy already!!! 

If you can help please contact Holly at 712-520-5075.   We'dj ust need it for about 2 weeks or so!
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10/01/2013
by Alissa Hogan - Long time friend of the Martin Family
MUSCLES NEEDED SATURDAY OCTOBER 5TH!  

Renovations to the Martin home begin on the 9th!  Since Curtis was injured last Friday in the motorcycle accident Holly needs some help moving the furniture out of the spare bedroom on Saturday the 5th!   

If you can help please contact Holly at boomasooner@gmail.com

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10/01/2013
by Alissa Hogan - Long time friend of the Martin Family
CORRECTION: Informational meeting for volunteers so willing to help Patsy and her family on their journey through ALS.  

TODAY: Tuesday, October 01  
7:00 p.m.  
St. John’s Episcopal Church  
401 Church Street  
Shenandoah, Iowa
Sponsored by Lotsa Helping Hands Community  
Coordinator ~ Teresa Simmons  
Tasimmons78@gmail.com

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10/01/2013
by Alissa Hogan - Long time friend of the Martin Family
Informational meeting for volunteers so willing to help Patsy and her family on
their journey through ALS.

Monday, October 01
7:00 p.m.
St. John’s
Episcopal Church
401 Church Street
Shenandoah, Iowa

Sponsored by
Lotsa Helping Hands Community
Coordinator ~ Teresa
Simmons
Tasimmons78@gmail.com
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09/28/2013
by Alissa Hogan - Long time friend of the Martin Family
If you are in the Shenandoah / Clarinda, IA area or near by we need help! Curtis was injured in a motorcycle accident on Hwy 59 yesterday afternoon. He was Patsy's morning coverage, making her breakfast and lunch before he went to work. We are going to need some help while he recuperates from the accident.

If you are interested in helping out with her care, here is the link: https://alsa.lotsahelpinghands.com/c/708606/login/ 

You can also contact Teresa Simmons at 712-246-9073 or tasimmons78@gmail.com

IF YOU CAN'T HELP YOURSELF BUT YOU KNOW PEOPLE IN THE AREA PLEASE HELP SPREAD THE WORD!!!!!!

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09/28/2013
by Alissa Hogan - Long time friend of the Martin Family
Great article about Patsy in the Valley News!  Check it out!  

http://www.valleynewstoday.com/news/local/martin-diagnosed-with-lou-gehrig-s/article_eb61f874-277f-11e3-90b6-0019bb2963f4.html


Also found this video about ALS - if you've got 30 minutes it does a great job of explaining the disease in very simple terms.  Worth the time!  http://www.youtube.com/watch?v=1X4AfIh-gaA
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09/25/2013
by Alissa Hogan - Long time friend of the Martin Family

Holly has provided a list of all the checks sent in so far and I've updated the supporters section so that they show and add to our total!  $7,883 raised to date!  WOO HOO!  Thank you so much to all of you who have donated.  

We've got a lot going on so here's a quick update:

-  OCTOBER 1st at 7:00PM at St. John's Episcopal Church (401 Church Street, Shenandoah, IA 51601) we will have Krista Strait-Higgins from the ALS Association doing a training!  This is a great way to learn more about the disease ... the more we understand the better we'll be able to support the Martin Family so if you can please come!

- OCTOBER 12 PEACE OF MIND FOR PATSY FUNDRAISER at Clarinda High School (100 North Cardinal Drive, Clarinda, IA 51632).  Thanks to Patsy's beloved students we will have a co-ed volleyball tournament with concessions, a spaghetti supper (4-7PM) and an auction (starting at 6PM)!  To sign up for a volleyball team or you want to be a judge or ref for the tournament call Michelle Sundermann 712-303-1199.  If you'd like to donate something to be auctioned off please call Misty McKay at 712-303-9226.  If you are willing to help with concessions or the spaghetti supper call Karen Williams at 712-260-7554.

If you own a business in the area or work somewhere with a community bulletin board we have a flyer available!  You can find it on our Facebook Group: https://www.facebook.com/pages/Peace-of-Mind-for-Patsy/404873019613880#!/groups/503434203079896/508436245913025/  or contact alie.hogan@hotmail.com

- A BIG THANKS to Beth Rarrick, Brian Rarrick, Lori Brockman, Paul Anderson, Mike Congdon, Christian Congdon and Sharon McAlpin who gave part of their weekend & a lot of muscle to helping Holly & Curtis begin some of the work in the yard to get ready for renovations!  Pictures have been uploaded to show the difference!  And of course we've included pictures of pooped out pooch Gracie (she supervised!) and one of Ed & Patsy sitting next to the relocated garden. 

- John A. 'JAG' Greenleaf published Patsy's e-mail in the September 20th Shenandoah Koral and he'll be putting information about our fundraising efforts in the next one!  Here's a copy from the Koral Vol IV. Issue 50:

This is an email received from Patsy Martin-Wilson, a Shen alum.  When I first read it, I thought someone was planning a cruel joke on myself and perhaps Patsy. But, this past week, I received another email from a close of Patsy's and came to the realization that this is not a joke.

I've met Patsy a few times, so I know her a little. This is such a tragedy for anyone to be stricken with, but Patsy is the first person I know to have been diagnosed.

 

Since Patsy sent this, I'm sharing it with you. One simple request, after reading her email, please say a pray for her. Her volunteer efforts will be sorely missed, and I know she misses out on doing the work!

 

From myself, THANKS!

 

In April, I noticed a weakness in my right hand ...slowly the weakness spread to entire right side of my body. Tests were done to find the pinched nerve ... Omaha neurologist and surgeon were seen ... more tests. Finally, at Mayo Clinic July 16. .. the Mayo neurologist Dr. Krueger told Ed and me after a mere hour of talk and walking, etc. that he thought it was Lou Gehrig's disease. The week of tests began ... I was poked and prodded until there was nowhere else to poke or prod ... but confirmation of test results did not arrive until Wednesday, August 5,

when the doctor himself called me with the news that the tests proved the diagnosis was correct.

 

I want people to understand why I am no longer volunteering; I miss volunteering very much.  I want to reveal the truth ... Patsy Martin has ALS, better known as Lou Gehrig's disease, and she never even played baseball!  I had dreamed I'd be well again before everybody needed to know how "down" I've been. My daughter Holly and her significant other, Curtis Paulson,  are moving in with us to take care of us. I can still type ... just not very fast. Facebook and e-mail both give me great joy!

And, of course, the ShenKoral makes me smile, laugh out loud, and sometimes cry.

P
eace and love from Patsy Wilson Martin, SHS Class of 60

 

Note from the Koral: Please keep Patsy and her family in your prayers!  Thanks.



- KEEP YOUR EYES PEELED!  The Valley News & The Des Moines Register interviewed Patsy on September 20th and will be publishing articles!  We are crossing our fingers that they include the information on our fundraising efforts to bring in more support!!!

- Patsy & her family were deeply touched by a post her former student, John Clark, put up on his FaceBook page.  Holly shared it on our FaceBook group because of how much it meant to her so I wanted to share it with all of you who may not be out there to see it:

"Dear Facebook friends and family,

Mrs. Martin was my 9th grade english teacher during the most trying time in my life.  My mom died halfway through the school year and I struggled greatly.  I suffered and hated everything this world had to offer.  Mrs. Martin kept me straight and helped me more than she'll ever know.  Now she needs my help and I'll be damned if I fail this test.  I ask you, my friends, if you have anything to spare to please donate something whether it be .50 or $5 everything helps.  I know times are tough but if you can please take a second to like her page and help." 

- Patsy had her first ALS Clinic on September 18th.  Holly posted on FaceBook an update afterwards:

"Today went well. The doctor wants Mom to maintain her weight, and not lose any weight.  ALS patients who maintain weight, generally the disease progresses slower.  Which means Curtis will have to continue to cook, because I then served broiled chicken and veggies for dinner, and that probably isn't going to do the trick...    (Nor, mind you, does chicken and veggies excite the diabetic in the house ... either.) However, he DOES get excited for Fried Chicken and all the fixings...  She reads your comments, and checks in with the site and her facebook page.  She checks her emails.  I got her a tablet, so she could sit in a comfortable chair and still use a computer, instead at the desk, in a chair that wasn't so comfortable.  She reads the cards and letters that have come in the mail every day.  From the bottom of my heart, I can't thank all of you enough for showing her the support that you have!  It means more to her, than you will ever know.  Thank you!"

Holly posted shortly thereafter that the drug Riluzole is going to be $1000 a month with insurance!  We are researching this further to see if there is any kind of assistance but a good example of how the out of pocket costs are adding up so keep those donations coming!  

- The ALS Association shared a film about a man with ALS that does a great job of showing what this disease does to the patient.  Here's the link if you'd like to see it:  http://g3t.ca/Mo3kmk  It is inspiring & heartbreaking all at the same time but well worth it to help us understand more about what Patsy will face in time. 

Well that's the end of this update!  Keep the love & support coming!!! 


-


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09/21/2013
by Alissa Hogan - Long time friend of the Martin Family
PEACE OF MIND FOR PATSY FUNDRAISER:

SATURDAY OCTOBER 12th @ Clarinda High School

  • Coed Volleyball Tournament with Concessions
  • Spaghetti Supper 4 - 7PM
  • Auction starting at 6PM

FLYER YOU CAN HANG UP IN YOUR BUSINESS AVAILABLE - contact organizer or visit the Peace of Mind for Patsy Facebook Page to get it! 

We still need help with teams for the volleyball tournament!  THRIVENT will be matching our funds up to 1K!   Please contact: 

Michelle Sundermann for info on VB tournament 712-303-1199

Misty McKay for auction donations 712-303-9226

Karen Williams for concessions / spag supper donations 712-260-7554



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09/20/2013
by Alissa Hogan - Long time friend of the Martin Family
LEARN MORE ABOUT ALS! 

We are holding a training on October 1st at 7:00PM at St. John's Episcopal Church: 401 Church Street., Shenandoah, IA 51601. (link to map: http://mapq.st/18HTej6).  Krista Strait-Higgins from the ALS Association will be speaking!  Please come if you can!!!! 
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09/15/2013
by Alissa Hogan - Long time friend of the Martin Family
Great Opportunity to Learn More About ALS!!

NMC Munroe-Meyer Institute Symposium 2013

A Multidisciplinary Approach for Treatment of
Amyotrophic Lateral Sclerosis (ALS)

On September 28th, leading experts in medicine, genetics and behavioral health will share the latest research, insights and  multidisciplinary treatments for adults with ALS. The symposium will feature lectures to help families, educators and health care providers of all disci­plines develop new skills and strategies for treating ALS. The program will cover a range of important and, in some cases, controversial topics in health care today including: the nature and etiology of ALS; biomedical, behavioral and educational interventions; specific considerations for ALS; and resources for individuals with ALS and their families.

The goal is to provide valuable information from an interdisciplinary perspective to families, educators, health care professionals, and others who interact with adults with ALS so that together quality of treatment for persons with ALS improves.

Symposium Objectives

  • To present an overview of the latest trends, techniques and tools in the evaluation and treatment of ALS
  • To demonstrate the value of an interdisciplinary approach
  • To provide information on enhancing the quality of life for individuals with ALS and their families

Sponsored by
The UNMC Munroe-Meyer Institute for Genetics and Rehabilitation

Registration Fee (registration deadline is 5:00pm CST, September 23th)
$75 Professionals
$25 Students, Family Members and Others

The above was copied from this site / go here to register: http://www.unmc.edu/mmi/symposium.htm

Agenda: http://www.unmc.edu/mmi/symposiumagenda.htm


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09/11/2013
by Alissa Hogan - Long time friend of the Martin Family

SUMMARY OF HOW YOU CAN HELP

(as of 9/11/13)

 

On-line Donation:

 

We have created a fundraising website to make it easy for you to donate. I serve as the coordinator for this site but I do not represent any company or organization. The website (youcaring.com) does ask for a small donation since it does not charge users with any fees but this is voluntary. The credit card processing company (wepay.com) does charge for their services, but the amount is minimal and the money goes directly into a bank account that only The Martin's can access. Funds will be spent at their sole discretion for the care and comfort of Patsy. Here is the link: https://www.youcaring.com/Peace_of_Mind_for_Patsy. This site will also provide updates and information from the family on a periodic basis so be sure to check it out!

 

Other Donations:

 

If you would like to donate but do not wish to do so on-line you can make a check payable to either "Charles & Patsy Martin" (Charles is Ed's formal name) or "Patsy Martin Benefit Account".  If you are local feel free to drop it off at Page County State Bank or if you are not local you can mail directly to the Martin home at 1465 220th St., Shenandoah, IA 51601-4562.

 

10-12-13 Benefit at Clarinda High School!

 

If you are local or can come to town there will be a co-ed volleyball tournament, a concession stand, a spaghetti dinner and an auction.  Anyone interested in entering one of the volleyball teams contact Michelle at 712-303-1199.  Entry fee is $100 per team.  If you are interested in donating any of the following contact Misty at 712-303-9226. 

 

  • Items for the Auction
  • Cases of Water, Gatorade or Soda
  • Candy Bars
  • Homemade / Baked Goods
  • Crockpots or Roasters with Spaghetti for the Dinner
  • Garlic Bread

 

 If you are on Facebook we have an event page: https://www.facebook.com/events/320346711444171/

 

Other Fundraising Efforts:

 

If you would like to gather funds on the family's behalf through a bake sale, a donation jar at your business or other such organized effort please contact Alissa Hogan at alie.hogan@hotmail.com so that we can obtain the permission / blessing from the family.  Sadly with those that abuse charitable giving you'll find that some donors are hesitant and suspicious. A letter from the family or some information on just how the funds will be used and where they will go will help you make sure to get the best bang for your efforts!

 

Give of your time or talent:

 

Patsy’s Care Team:   For those in the Shenandoah area you can volunteer to be part of the care team for Patsy. Volunteer opportunities will be available to help the family in numerous ways; from helping with household chores, to taking Patsy to doctor's appointments, and much more! If you are interested please contact Care Team Coordinator Teresa Simmons at her home number 712-246-3867 or cell 712-246-9073. You can also sign up on-line at https://alsa.lotsahelpinghands.com/c/708606/login/?logout&language=en

 

Home Renovations:  If you are handy we need your help! The Martin home is not at all handicap accessible.  Ed and Holly are working with a contractor to plan renovations that will add entrance ramps, widen doorways and renovate the bathroom. Simply - we need to make the house safe for Patsy!  Just since Labor Day Patsy has fallen twice - once giving her a black eye! And even Ed took a spill ... taking his moral support of his wife to a whole new level as he's got a broken nose! (No they will not let us take a picture of them together right now! Can you blame them?) If you would like to assist please contact alie.hogan@hotmail.com.

 

Give of your spirit:

 

Simply put, this has been an incredible emotional strain on the Martins. Your emotional support makes a huge difference! Here are some ideas and information on how you can show it:

 

 

        Stay In the Know:

       


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09/06/2013
by Alissa Hogan - Long time friend of the Martin Family
As Promised - Info learned today during call with Patsy's ALS Association Rep: 

WHAT IS ALS?  

Amyotrophic Lateral Sclerosis, otherwise known as Lou Gehrig's disease, is caused by the death of motor neurons.  Motor neurons are the nerves that tell our voluntary muscles what to do.  When they die, the messages from the brain to our muscles are unable to reach our muslces, resulting in paralysis.  We all have "Upper Motor Neurons" and "Lower Motor Neurons".  Upper Motor Neurons originate in the brain.  The death of these cause Primary Lateral Sclerosis.  The Lower Motor Neurons originate in the spinal column.  The death of these cause Spinal Muscular Atrophy or Progressive Muscular Atrophy.  Damage to both Upper and Lower Motor Neurons = ALS.  

WHAT CAN BE LOST? 
  • Voluntary muscle control of arms, legs, hands
  • The ability to chew, swallow and speak
  • The ability to breathe on one's own
  • Cognitive and behavioral changes may occur in a segment of people with ALS

WHAT STAYS NORMAL? 
  • Thoughts
  • Feelings
  • Opinions
  • Vision
  • Smell
  • Taste
  • Hearing
  • Touch
  • Awareness
  • Intelligence
  • Beliefs
POSSIBLE CHALLENGES FOR THE ALS PATIENT: 

Not every patient experiences all of these symptoms but this is a list of challenges Patsy may face.
  • Bowel Problems (intestines move but the patient can't help evacuate stool due to loss of stomach muscles; constipation is common)
  • Urinary Urgency (brain may give signals too late)
  • Fasciculations (muscle twitching)
  • Cramps (spasticity - can be painful)
  • Emotional Lability (inappropriate laughing or crying)
  • Fatigue
  • Insomnia
  • Anxiety & Depression
  • Sialorrhea (too much saliva or dry mouth)
  • Loss of Speech Ability (puts communication at risk)
  • Dysphagia (difficulty swallowing)
  • Nutrition (Often a feeding tube is recommended early in the disease process for nutrition and quality of life)
  • Choking
  • Thinking and Behavior Changes
SPORADIC vs. FAMILIAL ALS: 

There are two types of ALS which are currently recognized: sporadic and familial.  Less than 10% of those with ALS have a genetic component which results in extended family members over several generations being inflicted with the disease.  Fortunately, in more than 90% of the diagnosed cases, there is no increased risk of other family members developing symptoms. 

Scientists think the development of Sporadic ALS probably reflects an interplay between environmental and genetic factors, influenced by aging.  

Previously studied environmental exposures in ALS include: 
  • Smoking
  • Herbicides / Pesticides / Formaldehyde
  • High Fat Diet
  • Military Service
  • Physical Trauma
  • Intense, High Level Athletics
KNOW THE FACTS: 
  • 1 in every 800 men get ALS
  • 1 in every 1200 women get ALS
  • There are an estimated 30,000 people with ALS in the U.S. at any one time. 
  • ALS is not contagious!
  • It is estimated that ALS is responsible for nearly two deaths per hundred thousand people annually.
  • ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
EMOTIONAL IMPACTS ON FAMILIES:
  • Stress of getting diagnosed
  • Grieving the diagnosis
  • Coping with physical changes
  • Coping with role changes
  • Caregiver / Family Stress 

With ALS there is a grief and loss process with each activity that can no longer be accomplished.  Each member of the family goes through stages of grief.  These include denial, fear, bargaining, depression, anger & acceptance.  These do not occur in a linear fashion.  People can jump from one to another and move in and out of acceptance. 

Tips on helping the patient and the family: 

Emotions are neither good nor bad, they just are.  There should be no judgement associated with emotions.  Allow them and validate rather than invalidate what they are feeling.  

What NOT to say or do: 
  • Don't feel that way
  • You're just over-reacting
  • Just think positive
  • You're too sensitive
  • Change the subject
  • Talk someone out of what they are feeling
  • Try to offer answers or solutions to feelings
What TO say and do: 
  • Be present, be compassionate
  • Invite them to say more of what they are feeling, not less
  • Use reflective listening - i.e. "What I'm hearing you say is ... " or "It sounds like you are ... really scared, really mad"
  • Hold their hand, hug them, cry with them
Learn more at www.alsa.org!  
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09/06/2013
by Alissa Hogan - Long time friend of the Martin Family
Teresa Simmons & I had a wonderful call today with Patsy's ALS Association contact!   So informative!  We are going to be having a training on October 1st for anyone who would like to learn more about the disease and what volunteer opportunities there may be to help the Martin family.   I'll try to post some more of what I've already learned out here this weekend!  

Also the Alumni of Clarinda High School where Patsy taught for many many years are organizing an event for October 12th!   So save these dates!  More information to come!!!!
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09/02/2013
by Alissa Hogan - Long time friend of the Martin Family
Message by Patsy to her Facebook Friends on August 24th:

I have changed my mind...I don't want to take on the challenge of ALS after all.


I'm tired of slipping to the floor and struggling to get back up.

I'm tired of not being able to button buttons.

I'm tired of not being able to put in earrings.

I'm tired of considering steps too much of a challenge.

I'm tired of being tired, but I'm not tired enough to let ALS win.

ALS Association representative was here ... items will arrive Sept 3 to make difficult tasks easier. Forgive me for not communicating very often...I'll try to be more positive next time. 

Keep those attitude-saving visits, calls, cards, e-mails, and prayers coming...
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09/02/2013
by Alissa Hogan - Long time friend of the Martin Family

ALS - Facts You Should Know

(copied from www.alsa.org) 

ALS is not contagious.

It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.

Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.

Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.  More than half of all patients live more than three years after diagnosis.

About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.

ALS can strike anyone.

The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.

There can be significant costs for medical care, equipment and home health caregiving later in the disease. 

Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Many private health plans cover the cost of Riluzole.

Reports from three separate patient databases described long range experience with Riluzole. All three reports suggest a trend of increasing survival with Riluzole over time. More studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Riluzole clinical trials may be needed to see the long-term survival advantage of the drug. An interesting observation was that despite the fact that the Irish government provides Riluzole free of charge to people in Ireland with ALS, only two-thirds of the patients registered in the Ireland national ALS database reported taking Riluzole.


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09/02/2013
by Alissa Hogan - Long time friend of the Martin Family
Sent by Patsy to her Facebook Friends on August 19th: 

My right side seems weaker each day, and my left is not far behind! 

The easiest of tasks take me a long time. I used to be a fast dresser ... not now and not without assistance with buttons and earrings, etc. I don't undress very quickly either ... but I never did!

I asked Ed if he could cut my finger and toe nails ... he said he could cause he cuts his own all the time. When I said that I didn't want him to hurt me, he admitted his toe nails often bleed. We compromised and he drove me to town for a manicure and pedicure. The woman painted my toes pink instead of sparkly red, but I feel pretty any way!

Today was a good day! I didn't cry all the way through church today! Ed's big brother stopped by for a short visit. Rod was "captivated" by Gracie. However, I can't get the picture to load ... will show up with daughter's help.

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09/02/2013
by Alissa Hogan - Long time friend of the Martin Family
Message Patsy sent to her Facebook Friends on August 9th: 

In April, I noticed a weakness in my right hand ...slowly the weakness spread to entire right side of my body. Tests were done to find the pinched nerve ... Omaha neurologist and surgeon were seen ... more tests. Finally, at Mayo Clinic July 16. .. the Mayo neurologist Dr. Krueger told Ed and me after a mere half hour of talk and walking, etc. that he thought it was Lou Gehrig's disease. The week of tests began ... I was poked and prodded until there was no where else to poke or prod ... but confirmation of test results did not arrive until Wednesday when the doctor himself called me with the news that the tests proved the diagnosis was correct. 

I want people to understand why I am no longer volunteering. I want to reveal the truth ... Patsy Martin has ALS, better known as Lou Gehrig's disease, and she never even played baseball! 

I had dreamed I'd be well again before everybody needed to know how "down" I've been. My daughter Holly and her significant other are moving in with us to take care of us. I can still type ... just not very fast. Facebook and e-mail both give me great joy!

Peace and love from Patsy Wilson Martin

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