By Larry Kellerman Ph.D., MSA Coalition Board Member
While caring for my lovely wife and MSA patient, we’d have good, long conversations about the future for MSA patients and caregivers. Those discussions were so meaningful because one of us knew life would soon end while the other knew life would continue. She did assure me, however, that she would always be there standing beside me, encouraging a life of service to the MSA community.
She has “visited” more than once, a few times in a dream and other times out of the blue while I’m driving or working. I’m sure others who have traveled an MSA journey have similar visits and welcome the chance to one more time feel that loved one’s presence. They probably talk to that ethereal visitor, explaining what life is like now and wishing he/she could be there once again, talking and holding hands and thinking about the “what ifs.”
While driving to work recently, I felt her presence in the car. The reason why is because I’m pretty sure I heard “Is the news any better these days for people like us?” and I was pretty sure no other ghost would be riding in my car. Knowing her, it made sense she wanted an MSA update.
It took me a few seconds to recover from the feeling that comes when she drops into my consciousness. Then, with a good twenty minutes of driving before getting to work, I caught her up on what the MSA community did this year to change the disease’s trajectory.
Right after our entry into the MSA community in 2013, Google became our best friend for a while. We learned about this organization called The MSA Coalition and that there was little research taking place to improve MSA patients’ lives. Within a year, we saw there was no hope for any change in her life trajectory but that things were being done to change that narrative.
When she passed in 2016, the news was still pretty much devoid of any hope for an MSA patient. The groundwork had been laid; a global research roadmap meeting had led to a 3–5-year plan of action. The Coalition had released its first seed grant research dollars and increased attention was being paid to MSA research. This was in no small part driven by the devastating nature of the disease, but another driving force was the thought that if a treatment for MSA could be found it might also treat Parkinson’s patients. The impetus was there, and people were in place to take on that plan of action.
Fast forward to 2021 and her visit on that morning drive. I took a second to get my thoughts in order and began to voice the answer to her question. “Honey!” I exclaimed, “Things are looking up. Just listen to this.”
“You’d be happy to know we decided to up our research game. We’ve funded a project with a doctor at UCLA who is establishing a study to find out if there are any environmental causes. Remember how so many asked on Facebook or in dataMSA whether their exposure to X-rays or herbicides or pesticides might have caused the disease? We may have an initial answer in another year or two thanks to this research.”
“We’re not just focusing on environmental causes. Remember Dr. Khurana? He’s now on the Board and the research committee and has helped us build a good international team to study the genetics of this beast. You and many others who donated their brains to help researchers with their study have made this possible. Aren’t you glad you made that decision after we talked about it? All good things happen for a reason and maybe, just maybe, we are on our way to figuring out a genetic component to this disease as well.”
“What? You want to know if there has been anything developed that can treat patients? We thought we might have one with a drug called Verdiperstat. It made it all the way through a Phase 3 trial. No, it and the placebo had pretty much the same results so has been put on hold while researchers continue to evaluate it. A real bummer but you learn from setbacks as well as successes, right?”
“Yes, there are others on the way that might just make a difference. There are two compounds being prepared for a Phase 2 trial, and remember the idea of mesenchymal stem cell therapy? Yeah, it will also be the basis of a clinical trial through the Mayo Clinic. Two doctors from there had a fireside chat to open our virtual conference this year and were quite positive about its potential.”
“What’s a virtual conference?” you ask.
“Let me just say it’s a good thing that you’re an ethereal visitor and leave it at that!”
“You want to know if there’s anything being done for caregivers? That was the most amazing thing about you. To this day the most amazing thing I hear from patients on the call line – yes, that’s my way of helping – is the same thing you used to say; ‘I’m so sorry I’m putting you through this.’ Anyway, there is a lot going on for caregivers these days.”
“I don’t think webinars were a thing before you left, but now, they are the thing to help with educating and supporting those on an MSA journey.”
“Oh you are good – yes, it’s like a seminar on the web. And we’ve hosted these webinars for caregivers, we’ve collaborated with CurePSP – remember them? – to host a webinar for caregivers and we’ve really upgraded our website to provide more support and resources.”
“How do us volunteer board members find time to upgrade the website, provide support for everyone and still have a life? I know you remember those days while I was the caregiver representative and caring for you. Yeah, most of the others worked full time and still volunteered. But we got smart, Dear.”
“We decided to hire an executive management company. This will be the first full year they’ve been with us and the impact has been immense. That upgraded website. They did it. It’s much more informative and user friendly. Heck, there’s even a full section outlining how caregivers, family members and friends can best support others like you were supported. Remember how we used to say, ‘It takes a village to care for an MSA patient’? We’ve expanded our village, and it has made a real difference.”
“One thing a larger board allowed us to do was bring on board a medical advisory board. No, I wish Dr. P, whose clinical diagnosis made us an MSA couple, were on the board but she’s not. The doctors who are on the board are from around the country and represent some of the best movement disorder specialists focused on MSA. They’re now even working on the task of implementing a Centers of Excellence program.”
“Heck yes, patients and caregivers will certainly benefit from such a program. When we’ve developed the standards for centers of excellence, hopefully clinics will work to meet and exceed them, and you know part of those standards will be in-service training and experiential learning for others who are not at a center.”
“You’re right. It will build a much better network, something so necessary these days. Medical care, continuing education, therapy, palliative care and webinars should – yes, my fingers are crossed – lead to better care for everyone, because not everyone gets the care we were fortunate to have.”
“What is palliative care? You’ve never heard of it?”
“I forgot this wasn’t a thing when you passed. It is a really good system of care for patients and caregivers on a long-term medical journey. Remember those last six months with hospice and the help they provided me. That’s in part what palliative care is earlier in the journey. We’ve had a lot of good feedback from those who’ve had it become a part of their journey.”
“Yes, it certainly would have made our life better. But remember all those friends we had visit us, share their time and sometimes their lunches and dinners with us? They certainly were an important part of those last months.”
“I’m getting close to work so better say Bye.
Yes, I understand these chances happen only once in a while. Glad it didn’t happen while I’m shopping. That would have been weird.
It’s been good feeling your presence again. I didn’t even realize how far I’d driven.
I’m trying to keep my tears to a minimum but you know how it is. Maybe see you again sometime?”
