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I lost my dad in 2009 after a diagnosis of multiple system atrophy, although since he died I've often wondered if there wasn't some Lewy body involvement.   He was an Episcopal priest from 1955 to 1996.   The circumstances of his passing were horrific.  After returning from a vacation celebrating their 50th wedding anniversary, Dad started getting increasingly dizzy, and they thought he had benign positional vertigo.  In March 2009 they changed the diagnosis to Parkinson's disease, but he continued to suffer falls.  They took him to a hospital where he got a multiple system atrophy diagnosis, and he was shuttled back and forth between the nursing home and the hospital until he went into septic shock and died May 3, 2009.   There's a photo of him starting a job at St. Albans in 1974, of him with his grandson ten years later, of him in clericals, and the 50th anniversary portrait.

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My name is Cassandra Shearer and I'm writing about the biggest inspiration in my life.

In 2017 at just 42 years old, my sweet mother was diagnosed with Early Onset Parkinson's. This came as a shock to everyone, she was always the most active, running marathons, taking care of her family (four children, two of whom are still in high school), and having pride in her work. Now, at 47, she has been diagnosed with MSA. This, although unwanted, was not a surprise. Her symptoms had advanced quickly, low blood pressure, bad balance and multiple falls. Some of the falls resulted in surgery or frostbite, which led to multiple scary hospital trips. She soon had to give up her walking, her job, cooking and much else. This was hard to watch, especially as we were and are still so young.

One of the greatest things she has done was go back to school to get a second diploma. She was working a job she loved, close to home. Her symptoms started to get more noticeable, and the doctor advised her not to work anymore. This was difficult, because she is such an independent person. Although she had to give this up, she persisted and finished her diploma, with my dad pushing her across the stage in her wheelchair.

For every hardship she goes through, there are one hundred things she still can do. In fact, just this past holiday when I came to visit, she told me

"Eventually I won't be able to make it up the stairs, even with help, but I'll figure out different ways to do things".

Her optimism is astounding, and her attitude is one of the things helping her the most through this journey. Although there are many things she can't do like she used to anymore, she is creative and finds joy in the little things. She writes, plays games and exercises. She is an inspiration to me and to everyone who meets her.

Throughout this, we have been fortunate to come across multiple resources, specialists and groups that can help us get through this. We have gained an appreciation for every moment. It’s a hard fight, but together, we can make it just a little bit easier.

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My mother getting her second diploma after persevering and going back to school. She did this all while battling MSA and continues to inspire us every day ❤️

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My Mother Carol Scott lost her battle with msa on December 24th 2021. My MOM was my entire world! I cannot stress that point enough. For 51 years she never left my side. Yes I was and am the typical "mommas boy ". I could not imagine ever having to live life without duality phone calls and visiting her. Just hearing her laugh or JUST A SIMPLE " I LOVE YOU" . My MOM loved life ! She loved her family. For as long as I can remember she was a runner. We ran 5k races together. The last being in 2019. Which she won btw! She was 72. I don't want to dwell too much on the negative part of the disease. I want to have my MOM remembered in a positive light. The disease stole her life. For that I am angry but my MOM was truly a bright light in this world ! She always had a positive spirit. No matter the obstacles. From weekend college football games, to 5k races , growing up on the coast of S.C., ball games as a kid. She never missed a game . She was there for everything!! And believe me she would let you know she was there !! She was a proud woman and I am proud to be called her son. She was and is my hero !! The absolute strongest person I have EVER known !! There will be no replacement. I will ne er forget her laugh. Her hugs. Her words of encouragement and her direction as a parent. I LOVE YOU MOM !!! Life will NEVER be the same !!

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THE STRONGEST PERSON I'VE EVER KNOWN !!!

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Uncle Brenda has been a loyal home coach for Karen on the yoga mat

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My mother lost her fight with MSA on December 24,2021. Although her journey was tough, the fight this woman had against this disease is truly inspiring. Her symptoms began a few years back. Nothing crazy at first! A few falls, first hospital visit and her voice got quit. December 2019 is when we finally got in to see a neurologist and she was told she had Parkinson’s disease. Now if you know my mother, this was devastating to her. For her entire life she has been on the go. A runner, wife, mother, nana and great grandmother. Slowing down wasn’t anything she intended on doing. The beginning of that year she won a 5k race! Who would have thought we would be where we are today? After her Parkinson’s diagnoses and started a medication for tremors I just knew something wasn’t right. I was queen of google trying to find answers. Researching doctors and treatments. She was declining so quickly and I felt so helpless. Finally we found a new neurologist. He is the first person to explain MSA to us and how the diagnoses of this disease works. The falls quickly became a everyday thing. Hospital stays. Physical therapy. Medication after medication. She was loosing weight, I saw that glimmer of hope she had that it would improve go away. Once we were told she had MSA and that she was declining rapidly she told me no more hospitals. No more doctors. She chose to do hospice care at home. So our family decided to do all the things that made her happy. My sister and I cared for her 24/7. Sometimes she hated this, she wasn’t one that liked being dependent on anyone. But all in all I could see how truly happy  she was. She was home with her son, daughters and great grand children (probably her favorite part). We watched Clemson football games every Saturday. We went to the state fair, the zoo, Black Friday shopping. You name it and she wanted to be there! But as the disease came to an end I really saw the devastation it could have on someone. The pain that could barely be controlled, the anxiety, the anger that her life was being cut short. So we learned to adapt to make her feel loved. My daughter and nephew would crawl up in her hospital bed we had at home and she would light up. I would sit and tell her all the things going on, play music for her and just tell her how much we all loved her. She eventually became confined to her bed. Breathing troubles arose. I knew something was wrong and this was when hospice told me death was coming soon. I was devastated. My mom, the person that became my best friend would be leaving soon. That last week was full of family and friends letting her know how much they loved her. My sister and I did all the medications, and just trying to keeping her comfortable. I can’t count the number of times I crawled up in her hospital bed and fell asleep. We were all tired because we wanted every last minute with her to last. Her last breathe was gut wrenching. But shortly after I realized that she no longer is in pain.

MSA has changed my life forever. Loving someone and caring with someone with this disease will change the way you look at things. The amount of doctors that were completely unfamiliar with this disease was terrifying. I truly believe if more people were aware of MSA my mother would have had a different outcome.

I hope sharing this story with you all encourages you to help spread awareness.

Because now her fight, is my fight.

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This is my mother, Carol Scott. She lost her battle to MSA on December 24,2021. While her fight with this disease was difficult she never gave up. ❤️

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Autonomic Dysfunction Dysautonomia is an umbrella term used to describe various conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls most of the essential functions of the body that we do not consciously think about, such as heart rate, blood pressure, breathing, digestion, dilation, and constriction of the pupils of the eye, bladder and bowel function and temperature control.  To be diagnosed as a patient with Multiple System Atrophy, you must have 1 or more of these autonomic dysfunctions, most of which need medical treatment and sometimes require multiple hospitalizations due to infections of failing systems.

I have been hospitalized for severe infections due to failing systems 5+ times per year during years 2-6 post diagnosis November 2013.  These infections involved bladder, bowel, digestion, and lungs.   At one point, resulting in Sepsis precipitating a discharge to a Skilled Nursing/Rehab facility. I spent 9 weeks in a 5-star facility with 1:1 concurrent physical and occupational therapy 3 hours a day / 6 days a week just to be able to transfer from bed to wheelchair.  I was still not able to shower, dress myself or perform any other normal personal care activities.  After another 6 months of combination in-home and outpatient therapy, I did regain some independence in mobility and personal care.  For a brief period of time.

At present, I only have vision in one eye (convergence).  I am on a restricted, finely ground, or liquid diet due to gastroparesis which means I cannot digest very much food into my intestinal tract at any one time and I also have swallowing issues.  I have an external catheter system for urinary retention AND incontinence.  By far the most impactful has been respiratory failure.  My airway failed necessitating an emergency tracheostomy and I live on a ventilator almost 24 hours a day.  Talking is almost non-existent.  I must use a dry erase board to communicate to family, friends, and caregivers.

I am now bedridden and enrolled with in-home hospice for the last 7 months.  This is Multiple System Atrophy.

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“Bite Me MSA” said my late warrior wife, Deb

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In Loving Memory of our MSA Angel

Sandra “Sandy” Reisinger, 73, of New Port Richey, FL was freed from a long battle with Multiple System Atrophy on December 28, 2021.

Born February 11, 1948 in Post, TX she was the daughter of Charlie W. Guthrie and Ellen Earline Bartley. She retired from Publix in 2015 where she worked as a cashier.

To say Sandy lost her battle would be wrong because she never stopped fighting. Through her we know what resilience, bravery, selflessness, and beauty truly are.

Sandy was a beloved mother and is survived by her children James (Michelle) Smythe of Springtown, TX, Traci (Thomas) Rough of Elwood City, PA, Ricki Reisinger, and Shawna Reisinger both of New Port Richey, FL. She is also survived by 6 grandchildren and 3 great grandchildren.

Sandy was preceded in death by her loving husband Richard D. Reisinger of Clearwater, FL.

A graveside memorial service will take place at 11 AM on Thursday, January 6, 2022 at Calvary Catholic Cemetery in Clearwater, FL.

In lieu of flowers, the family asks that donations be made to the Multiple System Atrophy Coalition.

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Multiple System Atrophy is a neurodegenerative disorder that afflicts people in prime of life years, robbing them of their careers, sense of self, retirement travel aspirations, etc.  I was officially diagnosed in November 2013.  Year by year, MSA took a critical piece of functionality away from me.  These are called Activities of Daily Living.

In 2013, I took leave of absence from my role as a Global IT Director for a Fortune 50 company. This LOA changed to short-term and then long-term disability.  Shopping and meal preparation were not possible and money management had to be simplified with the help of my spouse and our financial advisor.

2014 brought one of the greatest challenges MSA patients must face, loss of independence.  I realized I could no longer safely drive and hung up my set of keys.

Although I already had a housekeeper for over 25 years, I found in 2015 that simple things like laundry and kitchen clean-up was impossible.

Motor skill deterioration in 2016 resulted in moving from walker to wheelchair and trips outside the home were too tiring.  Fatigue is a constant symptom for every patient I've ever known and too often, diagnosed as depression in error.

2017 through 2019, I required more assistance in showering, dressing, and overall personal care. By 2020, I was bedridden and due to an emergency tracheostomy on a ventilator almost constantly. These last 2 years have seen my need for outside caregivers increase.  I am now on in-home hospice care.

So when the research literature and doctors tell you it is a rapidly progressive multi-domain (motor and autonomic dysfunction) disorder, it is.  But over a long period of time taking its toll on family, friends and caregivers.  I have received from The Multiple System Atrophy Coalition many helpful resources, tips and specific support for a disease that is rare and has no cure.  I am very grateful to have found this well-run non-profit organization.  Every March is designated as Multiple System Atrophy Awareness month in all states.

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Fanciulli, Alessandra, and Gregor K Wenning. “Multiple-system atrophy.” The New England journal of medicine vol. 372,14 (2015): 1375-6. doi:10.1056/NEJMc1501657

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The drawing depicting phases of Multiple System Atrophy is helpful and probably outdated; but in my case three things were different. First, I had Frontal Executive Dysfunction as one of the reasons I was mis-diagnosed with Early-Onset Frontotemporal Dementia in December 2012. Secondly, recurrent falls and cerebellar issues (such as failing vision in only one eye not attributed to age or other disease and walking like a drunken sailor) were early. Lastly, my case of MSA is not as linear as depicted.

I have been through these mobility stages many times. I have severe autonomic dysfunction which was as depicted right on time year 2. My infections from dysautonomia averaged 5+ hospitalizations annually through years 2 and 6. Hospitals use strong antibiotics to help you recover quickly from these serious infections. Insurance is happy. I'm happy to be home (sometimes with continuing antibiotics) and hospital has a free bed. However, each time I was hospitalized for these infections I lost more mobility. Physical therapy helped me in the early years regain my strength within a few months of these hospitalizations; except after Sepsis. Hospital would NOT discharge me home. I had to go to an in-patient Skilled Nursing Facility (SNF) / Rehab Center to receive 3-hour PT & OT concurrently 6 days per week. This course of 1:1 rehab took 9 weeks just to regain enough strength to meet the goal of being able to safely transfer to wheelchair for a discharge to home. Then another 6 months of combined in-home and 1:1 outpatient physical therapy was required before I felt comfortable using my walker short distances within my home.  And finally, I used my manual wheelchair permanently from bed to toilet to sink. After 3 dangerous falls out of the wheelchair onto bathroom tile, I am not allowed out of bed without assistance.

In late year 6, an emergency tracheostomy was required due to paralyzed diaphragm, low lung function and vocal cords that closed automatically upon exhalation resulting in an impaired airway. Timing again aligned with diagram.

IN-HOME HOSPICE HAS BEEN A BLESSING. I have an aide 5 days each week. The daytime RN comes 2x weekly or daily depending on whether I have an active infection or other injury. We have had to summon the after-hours On-Call RN only twice. Hospice treats infections (after their physician diagnosis based on RN report, symptoms/test results) with antibiotics over longer course of time. They bring any required equipment such as X-Ray machines to me.

Although I am now bedridden and cannot speak, I am relieved to know I will NEVER see the inside of a hospital room again. I apologize for the long story but wanted to be clear that if you see this depiction of MSA stages of what will be happening and when, it may not apply to YOUR case of Multiple System Atrophy.

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I am pleased to be able to share my experience with Multiple System Atrophy.  In 2005, I began at the age of 50 to have balance problems, changes in articulation and my eyes were showing signs of struggling to move horizontally.  I developed tremors and was unable to drive within 8 months of the onset of symptoms.  Along with this, my neurologist told me I had Parkinsons-plus and it could be either PSP or MSA.  Later, he decided on MSA.  In May of 2006, it was necessary for me to retire from my position as a public schools administrator, a career I loved so very much.  As time has gone along, I have had a great deal of difficulty with walking, swallowing, breathing, heart rate slowing, blood pressure, eye movement, urination, and digestion.  So the autonomic issues have become of paramount concern.

In January 2020, MSA caused my vocal cords to obstruct my airway and I nearly died.  I was given a tracheostomy and a feeding tube, both of which are now permanent.  I look for ways to spend my time with our grandchildren and my musical interests.  Life is very confined and I don't walk without assistive devices, needing a wheelchair when we leave home.  My wife, Karrie, is a wonderful caregiver and has learned so many methods for caring for me at home, which takes a lot of courage, and her loving efforts keep me from living in a nursing home.  I really appreciate the MSA Coalition and want to express how much it has meant for us to have its friendship and support over the years.

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Hello, My name is Anne Marie Foytik, and I am here to tell you about an incredible man and his current battle with Multiple System Atrophy (MSA). My father, Edward Sierawski, began to have symptoms 10 years ago. Balance was the first and prominent symptom, which became cause for concern. Over the next 5 years, those symptoms progressed and still he had no diagnosis. Finally, in 2016, after many years of doctor visits, tests, therapy, medications, etc. doctors were able to diagnose that my father had MSA. It was a complete shock. He was a healthy man with no to little medical history and so much more life to live. We were told all the things to be prepared for and the average life span. The first few months were difficult as we tried to comprehend what exactly MSA is and what was to come. We learned MSA is a painful and frustrating degenerative condition that not only affects the individual with the condition but their family and friends that surround them.

Since his diagnosis, my father has had to give up some of his favorite things to do. Work – my father started his own business at the age of 40 and has inspired so many throughout his life. He loved being able to teach and help others grow. He has always shown what hard work and taking risks looks like.  Golf – my father has played golf since he was a young man, and it has been one of his favorite activities. Not being able to balance made golfing difficult.  Golf was not just a hobby but was something that he loved doing with his brothers, friends, and kids. I have been fortunate to be able to play with my father on many occasions in the past. They are some of my favorite memories with him. Speech – my father spoke for a living. My father was in sales for many years before he started his own business. He trained people to how to do their jobs better and to be successful. He always had a way with words whether it was work or if it was expressing his love for his family and friends. It was incredibly hard to see a strong, hardworking, social man lose some of the things that made him most happy.

With MSA, it is not easy to see the positives in life at times while enduring a dark and painful condition. But even the darkest of storms bring rainbows. Although my father lost the ability to work, he was able to pass on his legacy to my brother, John, who now owns and runs the business. He still provides valuable advice and guidance to my brother as he learns the ropes of owning a business.  Even though he cannot golf physically anymore, my brothers have been able to take my dad with them out on the golf course a few times to be able to still smell the grass, feel the breeze and be able to provide some banter and even some unwanted criticism. Losing his speech and ability to move freely have been the toughest changes that have come with MSA. But on a beautiful October day in 2020, my father was able to escort me down the aisle, he was able to have his one and only father daughter dance with the help of his scooter and was able to give a beautiful father of the bride speech with the help of a speech app.

My father has fought tooth and nail to stay in this world with his wife of 44 years, his 3 children and son-in-law. He has done every medical treatment you can think of and then some. He has traveled around the country to receive any and all help he can to prolong his life and to be here with his family. Therapy, spiritual healing, medication, stem cell treatments, you name it he has done it! To this day he is still able to speak to some extent, can stand and even walk a bit with some assistance, and is making sure he is here as long as he can be. And that is all we can ask for from him.
If I can give any advice to those with a family member or friend that has MSA is to stay positive and just spend time with them and keep them involved. Be there for that person. Make them laugh. Cry with them. Whatever time you can spend with them is precious time. One personal example I can give is watching sports with my father. My dad has always loved Michigan State sports, so being able to just sit and watch a football or basketball game with him is something I cherish so much. We even played the Michigan State fight song at my wedding.

I have had 35 wonderful years being my father’s daughter and pray for as many more as the Lord will give us. He continues to be the best father in the world to my brothers and me. He raised my siblings and I to be strong, independent, and confident people. He has always provided for his family even to this day and has loved us all unconditionally. How lucky am I? April 20th is his birthday and with that I just want to wish my father an early happy birthday! I love you so much and thank you for all that you are and all that you do!

Please visit www.multiplesystematrophy.org for more information and to donate if you are able.