By Judy H. Biedenharn, RN, BS
As people get older, they retire from their careers, often downsize their homes and, in general, tend to slow down their activities. I checked off the retirement item over ten years ago and am now working on the other two! To help accomplish this, I am stepping down from some of my volunteer activities – one of which is my active and official involvement with the MSA Coalition as an Emeritus Board member.
Resigning from the Board was a little difficult to do as multiple system atrophy has been a big part of my life for almost 35 years. My husband, Ned’s, symptoms began in ~ 1985 with a diagnosis of “most likely Shy-Drager Syndrome” in 1991. (MRIs and other advanced medical screenings were not routinely done before the turn of the century!). He received validation of the diagnosis from the doctors at Vanderbilt Medical Center in 1995 stating “they had never had a patient admitted for evaluation having a correct diagnosis and on all the correct medications” to address treatable symptoms. However, that being said, they wished us good luck, and told us about the Shy-Drager Support Group, started by the wife of a patient of Dr. David Robertson there at Vanderbilt… and that began my association with the Shy-Drager Support Group (now known today as the MSA Coalition). I was first connected to the group as a caller into the support line. Then after my husband’s death in 2003, I attended my first patient/caregiver support group conference being held that year in my home state of Ohio.
After that conference I was hooked! I loved what the organization stood for: Patient Support and Education… and I have attended every in-person conference for the last 15 years. I joined the Board of Directors a few years later and served as Chair for a few years and then moved to the Emeritus Board.
I have so many good memories after I joined the Coalition:
- Seeing the Board of Directors grow from 5 members (Dr. David Robertson, Dr. Tom Chelimsky, Vera James and Don Crouse and me) to over a dozen members today.
- Watching the numbers of patients and their loved ones calling the support line increase (thank you Vera James for ALL of the hours you put in talking to patients and caregivers, researching the internet to get answers to questions, and just being a loving sounding board for those who called in).
- Seeing the website grow, and grow, and grow (thank you Don) as computers left the business world and became a household item. Patients and their family members were accessing our website, printing off many of the articles that described their individual symptoms, and taking those articles to their hometown physicians, many of whom had never heard of multiple system atrophy. Our website was often the catalyst for the patient getting a correct probable diagnosis. This growth included posting of more and more medical research papers, which brought in more donations, which then enabled us to increase our funding for more research grants. Hopefully that wonderful snowball will keep rolling and get bigger all the time.
- Somewhere during those years, the Board did increase in size (thank you current Board members) and we added two more pillars to our mission, making our mantra Education-Support-Research-Advocacy, and the name of the organization was officially changed to the MSA Coalition.
But even with all of those good, positive things happening, it is YOU, the patients, family members, and care partners that I have personally talked with on the support line or met over the years—it is YOU who hold a special place in my heart. Watching a patient attend their first annual conference and actually meet another person with multiple system atrophy, and observing the bonding that takes place is a memory that lasts a lifetime.
Great strides have taken place in research and in treatment of symptoms in recent years, but there is still a long way to go. One thing is for sure, you can count on the MSA Coalition to be there every step of the way.
My advice to patients and caregivers is simple:
- Research your symptoms (the Multiple System Atrophy.org website is the most comprehensive site I know of)
- Communicate with your doctors
- Reach out to other family members, friends, and the MSA support line. Communication is best when you all are “on the same page” (or at least in the same book)
- Be as active as you can for as long as you can (if mobility is a problem, you can even do some exercises in bed!)
- Consider brain donation at the time of your death. It takes some pre-planning, but is so important for researchers to identify medical problems and determine possible cures for future patients (find out more on our website).
And last, but certainly not least, plan to attend the Annual Patient & Family Conference being held September 30-October2, 2021, featuring excellent physicians and medical professionals from various disciplines who are familiar with multiple system atrophy. Attending is a great way to keep informed and be supported in your struggles with this most difficult disease.
I’m looking forward to seeing you virtually this year… and hope we can have in-person conferences and I can give you a hug in person in 2022!
Hugs and Prayers,