Posted on March 10, 2017
Ok, I'm finally getting a chance to send you all an update on Marsha's recovery.
First of all, thank you all so much for all your kind notes and generous contributions! Your love and support have contributed so much more to Marsha's work toward recovery than we can ever express!
The following is an update on her care and progress!:
We had her scheduled for an appointment with the brilliant Dr. Lonnie Herman in Davie, Florida on 2/23, who has had tremendous results with patients with her similar issues. I was planning to visit her in LA after her appointment with him, but after several conversations with her, I did not like the way she was sounding, so I booked a flight for LA for two weeks prior.
After a few days with her and witnessing an even more accelerated decline - severe edema in her legs, extreme weakness, fogginess, slurred speech and breathlessness - it was off to Cedars Sinai with her where they ran a full battery of tests on all her vital systems. The docs at Cedars were very thorough. All her vital indicators, enzyme levels, blood tests, ultrasounds, EKG’s came up strong, fortunately. And after a lot of fine and stressful strategic movements and planning having to do with each level of diagnosis dovetailing into the next, the hospital released her 5 days later to a “Rehab” facility for PT and other monitoring.
When Robin Lerner and I arrived at the facility at about 8:30p to check in on her, we looked at each other in recognition of the fact that we had just entered THE INNER SANCTUM OF HELL! We hung out with her there for 2 1/2 hours, during which time, NO ONE in this horror house showed up to care for her. After taking a spin around the place, squinting in the dim light, holding our noses from the putrid stench and our ears from the ghastly sounds in constant play, we quickly packed her up and scurried her out of there and back to safe home.
In the richest nation in the world, this seems to be the quality of care available for the elderly and infirmed. It is a travesty. So that option flew off the table, and home she went. We were able to get a nurse and a PT person to come to the house a couple times a week instead, and her caregiver, Nancy has been working overtime for little compensation to keep her from harm's way during the nights.
As amazing as the team at Cedars is, medical docs offer ultimately only one treatment option for someone with her Parkinson's symptoms, even though she doesn't really have a definitive diagnosis of that disease, and that is the administering of L Dopamine - a powerful drug which allays symptoms for a short time while continuing to destroy intrinsic health and vitality, so that after time, the body crashes and bottoms out for good.
So, with the opportunity to work with a physician who is practicing what will undoubtedly be the future of medicine, and after getting her edema under control, a bill of health on her heart and other systems, and the assistance of her sweet caregiver, Nancy, we were able to put the two of them on a plane to Miami so she could keep her appointment with Dr. Herman!
Upon arrival, he did a thorough workup of her over the course of 3 hours or so and had encouraging news for her based on his innovative diagnostic procedure and proscribed protocol she will need to follow for the next 6 mo to a year and beyond, of various life-supportive substances, dietary prescriptions and other modalities. I’ll let her tell you more about it as she starts to experience her recovery.
As for now, we are in the process of stabilizing her living situation, meeting her daily/nightly care and expense needs, which are currently pressing and 24/7. We are connecting her with as many public and private agencies as we can whose foci are to provide added support to senior and disabled patients, but here again, America is a terrible place to be poor, sick and aging. We are looking into housing options, transportation assistance and much needed caregiving for evenings, among other things. Any suggestions, assistance or visitations you all might have to offer are certainly welcome, until such time as she can take care of her self again!
This is a very challenging time for her and for those of us who are caring for her and the support of her friends continues to provide much needed daily assistance. There is still work to be done - more fundraising, more strategic planning, more leg work, more treatments and more comfort and support to provide - and all we can do is thank everyone who has come forward to join us in the recovery efforts of this wonderful, talented and soulful woman, while we hope and pray for the best outcome possible for her.
Please pass this fundraiser on to your communities so that more people might be able to join us in this support web. In the meantime, we remain optimistic that, in time, these treatments, the help of us all and Marsha's strong will to thrive, will rebuild her health and quality of life for years to come!
We will keep this page active for as long as help is needed, continue posting updates and look forward to the time when we can take it down because she has made it through this gauntlet!
But for now, the work continues!
We on Marsha's care team - Robin Lerner, Hillary Rollins, myself and others, send you all much love, gratitude and hope for the future!
I am posting my phone number here in case anyone would like to reach out with questions, suggestions or words of support.