I was diagnosed with MSA back in 2014. Although it’s a very difficult experience, I have been supported by my wife, my family, friends, caregivers and the MSA Coalition which has been right with me seeking new treatments and therapies all along. The Coalition has funded many studies and is working hard to eradicate MSA. Please help them when you get a chance.
My mother, Eileen Dyas, was diagnosed with MSA the summer before she passed away in October 2017 at the age of 68. As a result, we (unfortunately) found out about the MSA Coalition and all of its resources a bit late. Since her passing, we've utilized the Coalition's resources, supported its mission, and attended the annual patient and family conference which helped us connect with others in the community, further understand the disease and provided us with needed closure. With its focused mission to support patients and families, educate the medical community, advocate on behalf of MSA patients, and support global research funding and brain donation, the MSA Coalition is doing important work to find a treatment and cure for this rare and terrible disease.
In late 1987, my wife Charlotte saw our PCP for tiredness and they gave her thyroid pills which helped somewhat. In 1990 she was stumbling and changed jobs to have shorter hours and the doctor sent her to a neuro who tried her on Sinemet and she responded fairly well. By 1992 they referred her to a movement disorder specialist who said more than just PD and probably OPCA. In 1995 our neurologist got her into NIH and they said probable MSA (Sporatic OPCA is MSA). By this time she was losing weight and pretty much bed or w/c dependent. She continued to decline and had a severe infection and coma in the summer of 1998 which led to the installation of a PEG. With the PEG she gained weight and recovered a lot of her movement which was lost to the infection. She died the day after Thanksgiving 2001 almost 12 years after her first PD symptoms. She fought a good fight. In 1998, I discovered the Vanderbilt Shy-Drager Syndrome list server (the forerunner of the MSA Coalition). Pam Bower was there before me and suddenly I had experiences of caregivers all over the World. Don Summers took over the National group about that time and was already finding money for annual national conferences. That same group is now the MSA Coalition and is a super dedicated group that now not only provides conferences, but also grants for MSA research. The picture is my wife in May 1998.
The MSA Coalition
In 1994/95 I was diagnosed with MSA at the Hershey MedicalCenter in Hershey, Pennsylvania, although at the time the disease was called OPCA. Regrettably, most people only live nine years after diagnosis, with some lasting as long as 18 years. Some of these data were derived from researchers affiliated with the MSA Coalition, which has done a great deal to bring attention to this devastating and incurable disease. And believe me, anyone who suffers from ataxia and related symptoms has a very difficult time of it. In my case, the causal agency for my symptoms is now thought to be cerebral ischemia, TIAs, and associated cortical atrophy, and not MSA per se. The vascular problems have destroyed much of my coordination and are now severely impairing memory and cognitive functions. Indeed, it is unlikely that I will recall having written this piece in a few days or weeks.
The point is, MSA is very difficult to properly diagnose and nearly impossible to treat at present. It can mimic many conditions, such as Parkin's Disease and a wide range of other neurodegenerative processes. I lived for over 20 years under the MSA diagnosis, and there were sudden flareups that made it impossible to do much of anything. But unlike most MSA patients, I kept bouncing back. It would often take some time, but many functions eventually returned. That doesn't usually happen with MSA, although that umbrella term includes numerous variants. With me, the recoveries were probably associated with regeneration following multiple small vascular traumas, although I'm now at the stage wherein a letter like this can take some days to complete.
The MSA Coalition provided me with much information and hope over the years, with hope being the only thing that kept me going. And although it is no longer felt that MSA is the cause of my decline, I still feel kindred to those who are suffering from it. In truth, all neurodegenerative processes are struggles that few healthy people can imagine. One wakes up exhausted, dizzy, and unable to walk a straight line--on those days when walking is an option. I am blessed to be as able as I am, and my heart goes out to those MSA sufferers who know only the long gradual decline that characterizes the illness. My mind is now entering into a phase that often makes it impossible to recognize my own caregivers and doctors. Yet I feel blessed. I am part of a community that knows that trying is fundamentally important to finding meaning and joy in this life. We are not alone as long as there are organizations like the MSA Coalition to help us. We have our friends, our families, and each other. And no matter what the future might bring, those blessings give us reason to go on. Hope lives.
My dad, Marc, was diagnosed with MSA-C in 2015. At the time, my family essentially knew nothing about this rare disease and we needed to better understand his diagnosis. When we learned that there is no curative treatment for MSA, we committed our time to understanding his symptoms, collaborating with doctors and finding ways to improve my dad's quality of life. Over the last four years, we've established the best symptom management care plan for my dad, of which we completely attribute to the MSA Coaltion.
As a soon-to-be graduate with a Masters in Social Work, I see first-hand the efficiency and dedication of the MSA Coalition in providing MSA patients, families and caregivers with the most optimal resources, research, support and education. When you really pause to consider how rare and complex this disease is, it feels reassuring and comforting to know that the coalition is wholeheartedly focused on helping those affected by MSA navigate this journey. Each conference, webinar, support group and fundraising effort is thoroughly thought through and the information and wealth of knowledge the coalition shares with the community is unparalleled.The MSA Coalition also provides guidance on all things MSA-related, from the most durable medical equipment to recommendations for specific therapies. The sense of hope and abundance of resources our family has received from the coalition has completely changed our lives. I encourage anyone impacted by MSA to become involved with this wonderful organization because the MSA Coalition will change your life too!
As a young professional studying and working in the field of research, I couldn't have asked for better support than what I received from this group. The MSA coalition has constantly provided funding for several research projects aimed at further understanding this disease in hope of finding a cure. In my personal experience, the MSA coalition have awarded me my first grant as PhD student and supported my work throughout the years. Years after finishing my initial projects on MSA, we are still in touch and there is a reason behind that. The MSA coalition is not only a support group but also a family for patients and professionals in the field.
I first sought medical treatment for a MSA symptom in 2004, and was accurately diagnosed in a teaching hospital in 2008. Like most lay people I had never heard of MSA. I went online, and discovered the MSA Coalition, although they went by a different name back then. I learned much on their website.
I joined their online discussion group about MSA and learned much about living with this disorder. I also was able to give and receive support from people with MSA and current and past caregivers.
I attended their annual conference in Nashville and have now attended three. All have been excellent. They have provided excellent info about MSA, the latest in research, and (what I like best) the opportunity to meet others with this disorder, and to talk directly with new friends I have made.
My name is Staffan Rundberg. I’m 53 years old and and I live in Stockholm, Sweden.
I was diagnosed with MSA-C in February 2018, which was a shock of course, since this disease is so rare and devastating.
My first symptoms were lack of balance and problems with hitting the right keys on my computer as well as a general feeling of something just not feeling right. I also had problems with coordination and slurred speech. I knew there was something wrong, but people around me didn’t really believe me.
After meeting several doctors, I finally met a specialist in neurology. He admitted me to the hospital for a few weeks, and initiated a series of tests. It took a year to get a diagnosis - multiple system atrophy, the cerebellar type.
Today I’m in my fifth year of the disease. Presently I use a wheelchair most of the time, and my speech has progressively gotten worse. Despite this, I try to live a ”normal” life. I have had to stop working, unfortunately. Becoming disabled in mid-life has been, and is, a whirlwind, but I try to accept what is happening to me. I’ve come to understand that acceptance is a big part of moving forward.
After getting the diagnosis MSA-C, I felt a big need to reach out and talk to and meet others affected by this disease. I found the MSA Coalition, among others. This is an international coalition, with the aim of finding a cure for MSA. I have gotten to know people from all over the world through the MSA Coalition.
They provide knowledge and arrange a yearly patient and family conference and I participated in the most recent one held in San Francisco in the fall of 2018. I look forward to participate in upcoming conferences if I have the strength and possibility of doing so.
I am posting this testimonial in memory of my wife Carol, who passed away April 19, 2018, just 9 days from what would have been our 45th wedding anniversary.
My wife was diagnosed with Multiple System Atrophy (MSA) in 2013. The neurologist who gave her the diagnosis mentioned the disease ultimately will affect her automic systems. We had no clue to what extent that would be, or what we needed to consider for the future care of my wife. Most doctors that she was seeing asked “what is that” when we informed them of her diagnosis. We usually had to educate the doctors and medical staff as what her disease was and what it could or would affect. That was a very frustrating experience for both my wife and me. In researching her disease i came to find out about the Multiple System Atrophy Coalition, being one that usually does not join such organizations, joined, hoping to fibd out what we could expect. I am ever so happy that we did. Not only did we find out what we could expect from other members of the coalition, but we found a group of people so willing to help us with questions we had, suggestions on what we could do, or use in combating the affects of my wife’s disease. Th coalition was addressibg the frustration we experienced dealing with doctors and other medical personnel by working to raise the awareness of this dreadful disease. The coalition sponsored meetings, webinars and fund raisers to that end, along with group sessions that educated the caregivers in vital subjects such as Medicare/Medicaid coverage. We would have been totally lost had it not been for our joining this very caring organization.
I was diagnosed with MSA in Feb 18. I luckily found this group to be the best place to turn to for literature, knowledge and support that, others ar suffering. The MSA Coalition is determined to find a cure and myself along with family members are grateful to have this Coalition working for us!
I have recently diagnosed with MSA after 2 years of various Neurological Symptoms. With the amount of information and support I’ve received from the MSA Coalalition it has helped me understand MSA far better. My family, friends, and coworkers have gone onto not only read and join the MSA Foundation they helped me raise $500 the first week I was diagnosed with MSA. I plan on educating as many as I can to get the word out about this organization and MSA. Thanks for all you do!
On November 25, 2013 Liz and I were told that she was diagnosed with possible Multiple System Atrophy – Cerebellum (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. Unfortunately, MSA progresses rapidly and within 2 or 3 years of symptoms it impairs walking and balance. Most are in wheelchairs by the 4th year and eventually become bedbound. The average person lives about 6 to 10 years after the initial symptoms start. Liz passed within 5 years on December 20, 2018.
We could not of made this journey without the support and resources of The Multiple System Atrophy Coalition. This organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information on their website that is specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their website is one of the first places that I went to looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My family thanks all of the dedicated volunteers.
On November 25, 2013 Liz and I were told that she was diagnosed with Multiple System Atrophy (MSA-C), a very rare terminal neurological disease that resembles Parkinson’s with no known cure. After receiving this diagnosis, we immediately wanted to know everything about MSA-C and found The Multiple System Atrophy Coalition website. We found that The Multiple System Atrophy Coalition organization is about dedicated friendly volunteers with numerous experiences helping the community of people with a very rare incurable brain disease. They offer a tremendous amount of information specifically related to Multiple System Atrophy. As a caregiver for my wife with MSA-C, their organization is one of the first places that I go looking for answers, information or direction. They are a great organization that represents our MSA community around the world to try and find a cure. My Family and Friends thank all of the dedicated volunteers.
In 2014, my mom was diagnosed with Parkinsonism, which was later re-diagnosed as MSA. The MSA Coalition has done great work, funding studies, and providing outreach and public relations for the disease. Getting the word out about a rare disorder is challenging. However, for those that suffer with MSA, they face even greater challenges. The MSA Coalition has done a wonderful job at fundraising, organizing volunteer events, and promoting outreach through various methods. I believe in their mission and what they do, so I applied for a spot on the General Advisory Council, and was awarded one. I am very thankful for the opportunity to help this non-profit that helps many others, including my mother.
What do you do when you are diagnosed with a rare, terminal, neurodegenerative disorder with no cure? Struck down in my early 50s with children still at home, and a career I loved but could no longer function at the same level? All the internet searches were so disheartening and most doctors have no experience with it which delays diagnosis and symptom management by years. I found the MSA coalition and there were other people like me all over the world! This international group advocates for research, fundraising and provides support for patients and caregivers. It is so appropriate that March is MSA Awareness Month and I have passed the 5-7 year prognosis celebrating my 60th birthday March 6th! Yes, I can no longer walk, swallowing and eating are difficult, my vision has been affected, and I am mostly bedbound. But I'm still here and thankful for every day I am given.
I am a nurse caring for a simply remarkable person, who inspires me everyday! I had very little knowledge of MSA and no experience caring for someone with this condition after 15 years in nursing. In early 2018, when we were trying to find the best solutions and answers to so many questions, we turned to the MSA Coalition. Needless to say, we wouldn't be where we are today with our care without them.
After years of trying to find answers to his symptoms my 79 year old dad, Jesse, was diagnosed with Shy-Drager Syndrome, now called Multiple System Atrophy. His neurologist took me aside and told me that my dad would probably only live for another 6 months with this rare disorder. While researching and trying to find out more about this disease I found this wonderful group of people who were going through many of the same things my dad was. It was the only place to find answers to what was happening and everyone was so willing to help each other. There was always someone researching and finding the newest information as well as suggestions for caregiving. We could call the support line at any hour and find a friendly voice to help us. This was a tremendous help to our family. There were answers and others who really cared. I know that my dad would never have survived as long as he did without our association with the MSA Coalition. I will remain forever grateful for this organization and the dedication of so many. My dad was almost 92 when he joined the other MSA Angels. I am so thankful for those extra years made possible by this MSA Coalition. We had him all of those extra years! In that extra time my dad was able to meet his beloved great-granddaughter and namesake, Jessica.
Pam Bower, Vera James, Gary Rose, and Judy Biedenharn were just some of those educating all of us who were looking for answers. They continue to do so and have moved forward with many more ways to reach out and search for a cure.
The MSA Coalition was truly a life-saver. My mother lost her battle to Multiple System Atrophy in Dec 2016 , 4.5 years after her diagnosis. During that time the Coalition provided immeasurable support, advice, and resources. We are far from a cure to this nasty disease but my dad, brother, and I made it through with the support of these people.
With nowhere near the resources of the ALS or Parkinson's Foundations, the MSA Coalition made up of volunteers who really care. They want to keep on the fight for their loved ones that are no longer able to fight. The annual conference, live-streamed, is incredibly valuable to current patients, caregivers, and even for medical professionals who are still trying to understand the disease themselves. I look forward to seeing what the next couple of years bring.
My mother was diagnosed with Multiple System Atrophy in 2014. We were lost...doctors didn't know much about the disease and we knew no other people who had it. When we found the Multiple System Atrophy Coalition, it was a great relief. The services and information about MSA (especially the brochure about what MSA is and its symptoms) they provided were invaluable and we used it again and again with our doctors, during ER visits, and just to educate family and friends. We attended one of the MSA Coalition's annual conferences and my mom made friends with others who had MSA. The support was immeasurable. My mom passed last year, and the outpouring of love from the MSA Coalition and the people we met through them was overwhelming and helped us through a very hard time.
After getting diagnosed with MSA, the MSA coalition has been so helpful to us in many ways. From signing the registry to answering questions about stem cell therapy to clinical trials, to where to find information the MSA Coalition has been very helpful to me Thank you for being there to answer my questions and especially Pam Bower thanks for all your help and being part of the MSA Coalition
My father was diagnosed with MSA-C in 2015, although presenting symptoms for years prior. My family and I had never heard of this condition and felt helpless given there is no cure. We devoted our time to finding the best doctors, best care team, the best methodologies for symptom management, and ultimately have been able to provide our father with the best of the best due to the MSA Coalition. The MSA Coalition has information, knowledge and a patient / caregiver / doctor community and network that provides both hope and resources to make this journey possible. We've learned to really live life and not hide from life due to circumstances. We appreciate this community, lean on this network, rely on the coalition and their support as much as possible. I urge anyone who is impacted by MSA to do the same. It has been life changing meeting not only meeting the folks who volunteer their time to the organization, but also all those involved in the community.
When my brother was diagnosed two years ago we were all devastated. Then we found the MSA Coalition and it has been such a blessing. I'll never forget the first time I went to their web page and discovered that people are working hard to find a cure for this disease. They have given us hope, guidance and very valuable information. Prior to this I was mired in grief and unable to determine what was out there for us, and more importantly what was legitimate research. I went down many rabbit trails and always depended on the MSA to give me correct information and guidance. I'm so grateful and thankful that they are there for us.