Support Hotline: (866) 737-5999


Written by Larry Kellerman

Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained” (Marcia Angell).

Yes, pain is soul destroying. I watched that with my wife, who suffered from the intense neuropathic pain that accompanies multiple system atrophy (MSA) for many patients. From the start of symptoms until her last breath chronic pain was her defining symptom. When a doctor would ask what her pain level was on the scale her response was typically “Higher than 10, more like 12 or 13.” When a body is fighting that level of pain the physical and emotional stress become overwhelming.

I bring this up because of a recent series of communications with a good friend of an MSA patient. She recently became re-acquainted with her friend after being absent for several years. During the conversations they shared her friend told her about the pain she was suffering and the lack of any medication to touch it. By the end of our first conversation I had shared with her the link to the MSA Coalition’s newly updated “MSA-What You Need to Know” booklet and a short summary of my wife Colleen’s experiences.

After the phone call my curiosity was piqued; what if any new developments in pain management for MSA patients might be found through an internet search? One of the first articles I found was a 2015 article “Pain in multiple system atrophy and progressive supranuclear palsy compared to Parkinson’s disease” (Kass-Illiya, 2015). The article reported the results of a small sample-size study (102 patients total) of which the aim was “to evaluate pain intensity, location, and associated symptoms in atypical parkinsonian disorders compared to PD.”

The findings were striking for the PD and MSA patients. Of the 65 PD patients 89% reported pain as did 81% of the 21 MSA patients. Even more startling – 100% (14) of the MSA-P (Parkinson’s) patients reported pain, while just 43% of the MSA-C (Cerebellar) reported the same. Location of the pain in the MSA patients was from the neck down, with the legs receiving the most reports. In other words pain is an undesirable companion on many an MSA journey.

This past Saturday evening I received an email from that friend. The MSA patient had passed away the previous day and she just wanted to say “Thanks” for sharing. The message read in part “I’m very sad because I will miss her very much. But I’m relieved that she is now out of pain.”

I started this post with a quote from Marcia Angell. Part of that quote is “…pain is soul destroying. No patient should have to endure intense pain unnecessarily.” There could well be 80% of America’s MSA patients (~20,000) who would resoundingly say “and that’s an understatement.”


Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer

How MSA has affected me and my family – and why I am fundraising for the MSA Coalition

How MSA has affected me and my family – and why I am fundraising for the MSA Coalition

By Guest Blogger Suzy O’Dwyer

I don’t really remember how it all started. I think my mom was pretty good at hiding her weakness, a trait I’ve inherited from her. But I’ll never forget the phone call: “Suzy, there’s something wrong with me.”

I brushed it off, “I’m sure it’s nothing mom.” I think were my exact words.

Because all those things that happen to other parents don’t happen to mine. My family, while nowhere near perfect, was as pretty close as you get. Lucy O'Dwyer's Mother had Multiple System Atrophy

Two parents, married for 30+ years, with a girl and a boy. Besides the small stint when my brother was a rebellious teenager, we are as pretty easy going as they come.

That all changed.

It took another year after that first phone call for my mom to officially be diagnosed with MSA. When you learn about MSA and hear stories of people who have been through this disease, that story is not uncommon. It took many frustrating doctors visits, many invasive tests, many fruitless treatments to finally find out what this disease wasn’t.

Oddly enough, my parents chose to tell us her diagnosis on Thanksgiving day. Sitting around the dinner table, we read the fact sheet on MSA. I skipped to the end and read the one word you never want to read: terminal. In fact, from the onset of symptoms, most people with MSA don’t even live past 9 years.

How has MSA affected my family? In every single way possible.

It took my mom and my very best friend. It robbed my son’s future memories with his “memaw”. It removed my dad’s wife and anchor. My husband, sister-in-law, brother, aunts, niece, all have a different life today because of MSA.

The O'Dwyer Family was Impacted by Multiple System AtrophyI fundraise because nobody should ever have to see their loved one go through the nightmare that is MSA. My mom lived for 2 years past that first phone call. Those years were filled with a steady decline that was impossible to watch.

The MSA Coalition has been a light in the tunnel for us. Seeing loved ones and relatives of our own come together and support my mom financially was uplifting last year. I think people find that with this disease, in particular, there aren’t a lot of ways you can support people. Fundraising gives people the chance to walk alongside you. I would encourage you, speak out about your journey. I know I’ll be fundraising every year until there’s a cure.

Thank You from a Volunteer

Thank You from a Volunteer

I wrote a review for the MSA Coalition today on the Greatnonprofits website as a volunteer. This made me want to send a short note to say hello. Even though I knew the day would come that my mother would no longer be living with me on earth, you never know what to expect. How you will really feel. We just celebrated her 63rd birthday yesterday, the first BIG “first” of the year. Tough. Thank you again for the flower bouquet for my mom’s memorial service too.

Anyhow – I just wanted to say once again how much I appreciate the Coalition and each and every one of you. Life is funny though. It’s odd to say how glad I am that this Coalition exists and that I can call you friends…because I also wish with every bone in my body that the letters MSA meant nothing to me. That my family was still going about our own lives. But…this is the reality. And I choose instead look at the situation as…thank goodness the Coalition is around to provide immense and incredibly important support, advice, funding, etc. I can’t imagine what our lives would have been like if my family had to suffer through mom’s diganosis without this community. That would have been a different level of hell.

Thank you for all the support through my various fundraising events and projects. I am indeed riding the STP again this year (the big Seattle to Portland bike ride) and I will be doing it with two of my mother’s dear friends. I’ll be raising money and eager to keep in the fight. I am really hoping to make it to Vancouver in June to represent the Coalition with Pam too.

And lastly, thank you Don for helping put together that beautiful video of my mom, dad, and myself. I’ve probably watched the video 30 times. Thank you for the chance to hear my mom speak again.

Love and hugs to you all. Maybe see you at the 2017 conference. Let me know if I can help.

Erin Knutson Williams

Please watch this beautiful story about Debbie Knutson and how she impacted the life of her personal trainer while she was in the midst of her fight against MSA.

Why I Support the Multiple System Atrophy Coalition

Why I Support the Multiple System Atrophy Coalition

By Dennis Bloemhof (Guest Blogger)

Janell Bloemhof suffers from multiple system atrophy.Janell, my loving wife of over 51 years, is ill with Multiple System Atrophy (MSA). As I write this, Janell is in hospice care.

When I think of MSA, relentless is the first thing that comes to mind. The patient may fight MSA, but it has never failed to vanquish its victims. Why is that? Probably because it is a very rare progressive neurodegenerative disease that afflicts only about 5 in 100,000 people. Make no mistake, MSA is a death sentence. But, before it takes our loved ones, it robs them of most every possible function for daily living we take for granted. It leaves them trapped in a body they can no longer control but they are cruelly aware of their continual decline.

My goal is to raise awareness of MSA and encourage donations for research to identify a cause and finding a cure.

Janell Bloemhof has Multiple System AtrophyWe do not have a well known public figure afflicted with the misery of MSA. Consequently, MSA does not have the celebrity panache of thousands of people making donations in the fight against it. I am hoping with the help of our family and friends, we can change that.Janell & Dennis Bloemhof rnjoying life

All of us touched by MSA must join forces in the quest to find a cure. One easy way you can help today is to create your own tribute fundraiser page to honor your loved one. Just click “Fundraise for this Campaign” to Join the Team Now or reach out to the MSA Coalition and they will create your page for you. Email or call 866-737-5999

A New Resource

A New Resource

The National SDS/MSA Support Group is excited to launch our blog. We are hoping to use this blog to stimulate conversation, provide helpful information and resources, and to advocate for our multiple system atrophy patients and caregivers. The web is a wonderful resource and we are doing our best with a small number of volunteers to provide the helping hand that our community needs. We invite you to participate on this blog, so please feel free to post your comments and please provide suggestions for any blog topic ideas.