How To Start A Local Multiple System Atrophy Support Group

The MSA Coalition has helped start in-person support groups throughout the United States. Our newsletter editor, Diane Adkins, recently interviewed Diane Graham, the convener of a group in Des Moines, Iowa, that began meeting in 2019. Diane’s husband, Daniel Miller, died from multiple system atrophy in 2018. We wanted to find out how she was able to bring this active, successful group together. Her answers can perhaps provide some tips for others thinking about starting a group.

Questions from our editor are in bold type.

• Diane, can you tell us why you decided to start an in-person support group?

Last August, the MSA Coalition put me in contact with a Des Moines area man whose wife had been diagnosed with multiple system atrophy. He was eager to talk with someone who knew what he and his wife were going through. We met for coffee, had a good conversation, and he asked was there ever a group gathering in Des Moines.

The truth was a few of us had talked about it more than once – but never took the leap. There were time issues among my little MSA friend circle plus “how to reach the right people” issues. Creating a private Facebook page for Iowa MSA families represented a baby-step forward, and membership on that page had grown bit by bit.

But I vividly remember how I felt when my late husband was ill: incredibly isolated, dealing with a disease my friends and family didn’t know. The MSA Coalition website, annual MSA conference webinars, the various MSA Facebook pages all became lifelines for us. But like my coffee friend from last August, I, too, was hungry to share this journey in person with others close to us. I was fortunate to connect with a woman, living just blocks from me, via those national MSA Facebook pages and vividly remember feeling like I’d won the lottery! We still meet regularly, though we’ve both said farewell to our beloved husbands. Then I met a couple more Des Moines women whose husbands both had MSA, and we became an occasional lunch threesome.

Prompted by that August coffee, though, I decided helping with a support group could be my chance to give back. When you’re living with the disease in your family, you barely have time for anything else. Now, I did have time, and there was enough distance since my husband’s passing to believe it would feel good to help.

• How did you spread the word, especially in the face of HIPAA privacy laws?

That initially felt like our biggest stumbling block. We joked that maybe we’d have so few people we could meet in someone’s living room! Still, we had our Facebook page members as a starting point, and that’s become the source of our core group. We also shared meeting flyers with the two major neurology practices in town, with metro area Parkinson’s support groups and with major physical therapy practices that treat Parkinson’s. Our thinking: MSA folks sometimes begin with a PD diagnosis. That was true with my own husband.

I also shared the group’s launch with my own Facebook friends and asked them to reshare it, just on the chance that someone knew someone who had a diagnosis.

Frankly, we were blown away to have 17 attend that first session, including nine diagnosed with the disease. And at our second meeting – another 17 in attendance — a woman and her caregiver drove over from Cedar Rapids, two hours away. We knew we were meeting a need in our state. Our group meets every other month, but I’m sensing momentum to increase that to monthly.

• How did you go about finding a suitable location—did you find that to be difficult?

We were incredibly fortunate that one of my MSA lunch group friends arranged for us to meet for free at her Temple. It offers accessible parking, a comfortable conference room, and the staff treats us better than some hotel conferences I’ve attended! We’ve also been offered meeting space at a large physical therapy facility, should we ever want to branch out.

• Is there a theme for each session, or is it an open discussion of shared difficulties?

The first session was definitely get-acquainted time, where everyone shared personal MSA journeys. As we all know, no two stories were alike. One of our members is also a nurse, and shared her experience with palliative care vs. hospice care.

That then became our meeting pattern – a program followed by open discussion. Members gain a lot of support just by hearing the struggles everyone’s faced. There are practical benefits, too: tips for choosing and installing adaptive equipment at home; sharing contact names for special medical care needs or while navigating byzantine health care systems, both private and at the Veteran’s Administration; working the angles to get cheaper medical supplies (hint: consider Canada). At our most recent gathering, the pros and cons of joining a clinical trial came up, as one family explored joining BioHaven’s Phase 3 trial for verdiperstat.

• Have you had speakers?

We aim for a presentation at each meeting. Besides our palliative and hospice care discussion, other topics have included LSVT BIG and LOUD therapy as well as potential benefits from home-based occupational and physical therapy programs, and how that can be covered by Medicare.

• What do you think is a good length for these meetings?

We average about 1 ½ to 2 hours. We’re sensitive to the fact that it’s an effort just to make it out and to our gatherings.

• Refreshments, yes or no?

Lucky for us we have a group that likes to share treats, and usually we also offer water.

• What do the attendees seem to find most helpful about these meetings?

Without question, the biggest benefit is sharing with others making the same journey. “The group helps us know we are not alone,” said one. Others say they leave feeling inspired by the group’s positive spirit.

• Biggest barriers to a successful meeting.

The main thing to remember is that we truly never know from month to month how many will attend. Medical conditions sometimes prompt last-minute cancellations, but that’s to be expected.

A last observation:

We’re still learning from each gathering. I’ve just made a great connection with our Iowa chapter of the American Parkinson’s Disease Association. That was inspired by a MSA Newsletter story about a Winter Park, FL, MSA support group doing something similar. The Iowa director sounds eager to partner with us, saying she recognizes a clear need for MSA support in our state. She’s already talking about technology our group could tap to allow dial-in participation from around Iowa. And for the first time, next June’s annual Iowa APDA conference is expected to offer a breakout session just to discuss MSA.

So check back with us next fall. One member said he hopes our group will expand to outgrow our conference room space. We shall see!

Thank you, Diane—we will make sure to check back.