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. 
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.
I 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 for sharing Suzy. My mom has been suffering for years. The first several years we were told it was Parkinson’s. Then as her symptoms progressed, they defined it as MSA. I, as well don’t know where’d she be today if it weren’t for family. I really don’t think she would’ve survived near as long in a nursing home. She can’t do anything for herself and has required 24/7 care for the last 2-3 years. I feel blessed every time she makes it to the next holiday/birthday.
I do my best to share what MSA is with others. Most have never heard of it. I wish a happy holiday season to you and your family.
My mother died last week of MSA. Her first symptoms were about two years ago. By last fall she was completely dependent and unable to feed herself. By December, the extreme pain started and she also lost the ability to speak or type on the computer, so all ability to communicate was lost. She began hospice care at the end of December. Thank you for your blog post.
Hi Bridgette – Thank you for sharing your Mother’s story. Her MSA progression was very fast. While the speed of your mother’s progression is not unheard of by any means, experts state the usual life expectancy of multiple system atrophy is 5-9 years from diagnosis. We know of several people that have lived for up to 18 years after diagnosis. Each case of MSA can be very different from the next, which in its own way can provide hope and challenges. Another factor id life expectancy is the time it can take for an accurate MSA diagnosis. The earlier the diagnosis, the longer the average life expectancy.
Has anyone heard of a clinical trial or study involving hydroxychloroquine to treat MSA?
Hi Denise,
Sorry, no we have not heard of a study for this drug. Please refer to the MSA Treatment Pipeline page for a list of drugs and other interventions that are being studied for MSA. https://www.multiplesystematrophy.org/msa-research/msa-treatment-pipeline/
Best regards,
Pam
pbower@msacoalition.org
MSA is a horrible decease, I lost my husband to this terrible decease June 2017. He had it for about 7 years that we are aware of. He was a wonderful strong healthy fit person. Father of two sons, a son, brother ,uncle and friend to all. Worked for as long as he could (Or was able) and never one time did he pity himself. He worried more how it affected all of those around him. the decease was very subtle at first, making him tired, off balance ….but as the years progressed it too over his motor skills .For a man who loved to entertain this was the most difficult. My hubby was not able to speak/ be mobile at all in the end . He was the bravest kindest man he could be. His message was never lost on our sons , love your family, work hard and love hard. In his name we have established foundation to help other as he would be doing if he could. He was only 50 yrs when diagnosed ….or it started as it took some time to figure it out. He passed away June, 2017, peaceful and in the engulfed room of family and love. God bless these families, its a hard decease because so little in actually known of it. the best medicine is patients and quality time, use the meds available for comfort.
My husband and brothers have MSA and one brother died of also. I heard they are all related diseases. My SIL is now dragging her leg .Just wondering if it’s passes down. ?
Hi Eileen,
MSA is thought to be a sporadic disorder that in 99% of cases does not pass down to children. There are several hereditary diseases that mimic MSA symptoms. It would be important for your husband’s family to be evaluated by a geneticist interested in MSA and similar disorders. Please reach out to the MSA Coalition if you would like to be connected to a researcher.
Best regards,
Pam
pbower@msacoalition.org
Hello everyone, I am really touched by all ur stories and have tears in my eyes. I have lost my father a month ago because of msa. And recently I opened an Instagram page : msa_awareness. I invite u all to follow it and whoever like to share his story he can dm me with a video where he tell the story and all the steps he have been through. This way we will spread awareness and share ur feelings with the world. God bless u all and give u courage!!
So proud of you for putting your deepest feelings into words. Helpless is exactly what you feel as you watch the terrible decline of someone you love. Though unbearable to watch, I can’t imagine what it was like for your mom, my sister. What a moment it will be when a cure is found for MSA!
Does anyone know if it is inherited?
Hi Jean, MSA is still classified as a non-hereditary disorder. There is an inherited form only seen in Japan.
As I scrolled through the internet I found your story. I too can relate. My amazing, kindhearted father was diagnosed with Parkinson’s. However with his rapid decline we knew there was something more. Monday he was diagnosed with msa. Its heartbreaking.i struggle to find the words. I pray for a cure in my lifetime. Thank you for sharing.
I wish you the best it’s not easy my father passed away from MSA on the 24th it was an unexpected death right there in my living room. PLEASE guys whatever you do just constantly remind them you love them ;( I am currently living with regrets right now
I’m living the exact same nightmare as you, my father was diagnosed 3 months ago, but he’s declining rapidly. It’s horrendous to see the once strong man become weaker and less and less confidant as the weeks go by, my father is pretty munch housebound already at 74
I’m sorry about your mom. My husband has just been diagnosed with MSA-C and there is no answers. We have 6 kids. It’s not any news you want just before Christmas. It feels just like my heart has been ripped out. I have to live with not knowing how long I have with the love of my life, my best friend my everything.
My father is suffering from Parkinson’s disease since 1 year..he is unable to walk,cant speak clearly but he can watch himself..can anyone tell me whts his life expectancy currently he is 75 yr old..
My mum has recently been diagnosed with frontotemporal dementia although after over three years with various investigations and no proper diagnosis, I’m not convinced. I found out about MSA through research and she fits so much of the criteria more so than anything I have read. I just wonder whether this will be uncovered further down the line.
Hi my name is Jessica Devore My father passed away on Mother’s Day from Parkinson’s I just want to know how you and went through it and give me some advice want to raise some money if you want to help if anybody wants to help my father passed away from Parkinson’s he was really sick
It’s sad. My husbands been diagnosed with MSA little over 2 years. His walk is very unsteady speech is slow and not clear and right hand shakes. It’s very painful to see him this way. He act out in his dreams. His urgency & frequency to go to bathroom makes him not go out and likes to stay home most of the time.He was a person who never even had a headache all his life.I wish they find the cure soon.
My husband was officially diagnosed in 2014 but had symptoms for years that were mysterious to most Drs. He can barely feed himself and is totally dependent on me for everything else. It is difficult because he is 6’2 and 230 lbs. I quit my job as an RN to care for him and am exhausted. Any advice on respite care and costs?
Thanks Marion
I just ran across your post and wanted to let you know my husband has had MSA, from first signs of something wrong to now, has been almost 19 yrs. The Doctors first diagnosed him with parkinsons, then lewie body disease , then he developed the orthostatic hypotension and was finally diagnosed with MSA in 2009. There is help out there for care. there is a program that can help. It took me years to find it . It is a Federally mandated long term care diversion waiver program. Each state calls it something different. if you google long term care programs in your state you should find it. The only catch is he has to be over 65. It is handled thru medicaid. The income qualifications are not the same as regular medicaid they are based only on his income alone and are much higher income guidelines around $2339 a month before you may have a patient pay portion.. Most DSS offices don’t know about it and will try to qualify you under regular medicaid but it is not reg medicaid., you have to do a lot of digging and you can get the qualifying info online to tell Social services it’s not regular medicaid. you may have to get tough with them if they try to put you under the regular medicaid. I had to just go thru it again after I moved from Florida to Virginia. They had no clue what programs they were mandated with. I had to send them copies of the program guidelines from the internet searches. They were able to do it but it took being your own advocate for it. I get 45 hrs a week for his care and 480 hrs of respite care a year plus other benefits. worth fighting for. Good luck, and I hope this helps.
Thank you for sharing, my father was just diagnosed today with MSA. We have been going from doctor to doctor for over last few years and his symptoms were only getting worse. Appreciate reading every one’s comments. Our family has a long battle ahead and lots of dark days to come. I am my fathers little girl, and today was the hardest day being with him getting this horrific news. I am absolutely scared to lose him or to continue to go thru the progression of this disease. But I pray my family and all his friends can come together to help him fight thru this in the most positive way. Thank you all And so sorry for each and every one loss.
Can you tell me his symptoms leading up to diagnosis, and how long it took to be diagnosed?
So sorry i just am now seeing this. He started to feel signs of dizziness, thought it was his Blood pressure meds. he than got sepsis after surgery, we thought it was residual affects from the sepsis, but he kept getting weaker, dizzier, slurring his words. We thought he had a stroke. We went to 11 neuro doctors, and cardiac, urologist, and about every doctor you can think of ruling everything out. He had multiple urinary tract infections. They kept ruling out his heart, lungs, spine, back, and so on. Finally did a Brain MRI and was able to see some stuff on there, seen him walk, his speech, he did nerve test, and they first diagnosed him with Parkinson’s disease. we questioned that. Had a very hard time thinking it was that. went to 3 doctors after that, and all of them sent him to movement doctors that they all agreed that he had MSA. And from July till now, he is now wheelchair bound. slowly losing his speech, having a harder time eating. Getting weaker daily, sleeping lots more.
I’m 82yrs of age. Is there a support group.
I would love to talk with someone about msa
My Brother was diagnosed 3 years ago he is rapidly declining in front of our eyes. Its so hard to look at, all we can do is support his family in a positive way . I feel so sad reading all the posts and sorry for everyones loss . please god there will be a cure found soon its a horrible disease.
I have been diagnosed with MSA-C any information that can be shared with me to help with the daily life would be greatly appreciated.
Thank you
Hi I also at Disease and have been seen at the
MRI level “ radiologist “ have been diagnosed with MSA C. Looking back I have had it for two years.I am waiting to see a neurologist in Toronto Canada I live, about 3hours away. The life span projections and “rapid decline “ scenarios” are scaring the hell out of me. I am able to walk with a wobble or lurch that seems to be worse later in the day. How are you progressing each day and how far in are you? I have plans but wouldn’t do them if there is only a two year window. How is your history , are you holding on to what you have or getting more symptoms overs a shorter period.
Any description would be valuable
Thank you.
I am doing the best I can and refuse to give up
My mother recently got diagnosed. She already has Neurofibromatosis, but about 2 years ago began declining quickly. Loss of balance, slurred speech and loss of coordination. I am an only child and only 21. I’ve had to drop everything and stay home w her. It’s hard seeing someone you love deteriorate so fast before your eyes. She struggles with swallowing and I’m afraid I’ll lose her with that.
The sad truth about MSA & other diseases like Parkinsons is there is no treatment & medication is strong and debilitating. The best thing you can do is enjoy life while you can.
My beautiful cousin was diagnosed with MSA just over two years ago now. I have watched her steady decline in mobility, speech appetite and a deterioration in her mental state. The worst thing for me though is watching her family fall to pieces with her husband struggling as a career, her daughter making her feel more of a burden to the family and her sons avoiding the whole situation. Everyone is trying to cope in their own way. Listening to my poor cousin as she desperately struggles to come to terms with this progressive debilitating incurable illness is heartbreaking. I wish we could all get to the stage of making happy memories for her.
I felt that someone is finally feeling my pain. My dad is now suffering of MSA and I dnt feel he has a lot of days to live. Sharing your story with us made me feel better. I don’t know if u can help me and my family. I really hope that ur mother is in heaven now ????
We found out yesterday that my mother has msa-c. I am an only child and me and my mother talk every single day.She is literally my best friend. I’m so lost right now. The sad part is me and my father are a total mess and the poor lady going through it all is the one having to support us. Just trying to stay strong. Everything I’m reading though scares the heck out of me for what’s in store. She can walk with a cane and has a little slurred speech. About 6 months ago this all started.
One thing that she started taking after the first mri and other sets of tests was 1000mcg of b12 twice a day. Idk if it was just her or why but this definitely helped with awareness and speech imo. Just thought I’d share that.
I am not prepared for this and am scared to death to even think of having to see my mother and best friend go through this.Thanks for this article though. It does help to hear what others have to say about this terrible disease!
I’ve just been diagnosed with msa and don’t know how to deal with this
I’m 60 years old and started displaying symptoms about 2yrs ago after numerous visits to the doctor I finally raised the funds to have a MRI done and have been diagnosed with msa
At the moment I feel fine but how do I deal with it and how do I assure my family I’ll be okay
Hi Leo – Please call our support line at 866-737-5999. It is manned by experienced MSA caregivers and they can listen and offer advice on your questions.
My MIL is 84 and was diagnosed with MSA-C about ten years ago. Her first symptoms were a few years earlier. She had falls, blood pressure issues, stiffness and slurred speech. She has been in a wheel chair and in assisted living for 6 years now. In the last year or two she has started to have problem with her controlling her limbs. She can feed herself sometimes and then other times she has very little control of her arms and legs. We are very fortunate that she has survived this long with this terrible disease, because for most the life expectancy is not this long. I am writing today because recently her younger sister has been experiencing falls, stiffness in her legs and some slurred speech. Her sister has had many tests done and the doctors are unsure of a diagnosis at this time. From most of what I have read this disease is not hereditary. Has anyone out there had any siblings or relatives diagnosed with MSA?
We have three generations in a row with diagnosis’s, grandfather was diagnosed with Parkinson’s but later suspected to have MSA, my dad has been diagnosed with PSP and I am in the process of being diagnosed with MSA.
I have been diagnosed with MSA at 42 years old, my father was diagnosed with PSP and my grandfather was also diagnosed with PSP. The neurologists continue to tell me the disease is not hereditary but my family history tells a different story.
Is there anything in Australia that is a support group, my husband has MSA but the doctors here don’t seem to have a lot of knowledge or advice. We feel alone with this journey.
Hi Virginia. My husband was first diagnosed with Parkinson’s in 2010, then Lewy Body disease, now for the last few years, MSA. In our experience it’s true that there is little support here in Australia. Our neurologist said there was nothing more he could do for him when the diagnosis was made as Levodopa had to be discontinued due to huge BP drops from sitting to standing. A chance visit to a hospital for a fractured ankle gave them a chance to witness his severe orthostatic hypotension which lead to them prescribing him Midodrine, which is only available through the Hospital, with Government permission. It can’t be purchased through a chemist, via a doctors prescription. It kept him upright for a few years but his condition deteriorated to constant collapses and myoclonic seizures. He is now sadly in a nursing home but has constant delirium and myoclonic episodes. It’s horrific to witness the suffering this disease has on your life partner. I visit to support nearly every day and hope COVID doesn’t lock us out in the future. Funnily enough his last name is Donovan too and he said his grandma on his fathers side had Parkinson’s. I wonder if your husband and mine are related? It would be a strange coincidence.
Hi Virginia Donovan
My name is Mary Coulouris , I live in Australia .
My husband has MSA we have been living with it for 7 years now.
I am caring for him . I would be very happy for you to get in touch with me .
Regards
Mary
I suspect I may have MSA and like many have been to several neurologists. At the moment I have been diagnosed with cranio-facial dystonia and cervical or neck area, but I feel pretty awful and stiff all the time with swallowing troubles. Thankfully levodopa is giving me some relief each day.
Being a single person with no immediate family, in the interim, I’ve needed and found support through a website called http://www.HealthUnlocked.com
There are Parkinson’s and PSP (another type of Parkinsonism disease) FORUMS where many people post and answer questions as best as they can and I’ve seen some posts about MSA. There are many kind, understanding people on it. It might be a place you too can go to. YouTube also has lots of information about MSA from neurologists and organizations that post videos explaining the disease and even some personal experiences.
My mother died Oct 31, 2019, of MSA. It was diagnosed during her last week although she had shown signs for at least five years. It is a very sad and long way to leave this earth. Her mind was sharp to the end, but she ever so gradually lost mobility, then dexterity, then swallowing.
I miss her, but she is no longer suffering.