I'm new here!
Hi, my name is MSA49. I've been diagnosed with Multiple System Atrophy
Hi, my name is MSA49. I've been diagnosed with Multiple System Atrophy
Hi, my name is cabellri. I’m new to The Mighty and look forward to sharing my story.
March 31st was the last day of MSA awareness month.
Here is my favorite and last photo of my series of the two most favorite people in the entire world.
If you don’t know what MSA is the research Multiple System Atrophy. It’s a progressive form of Parkinson’s with a mortality rate of 10 years upon first symptoms. We don’t know when Eric’s first true symptoms were except he was dx 3 1/2 years ago. He’s been struggling with some issues that are both MSA-P and MSA-C. Hopefully being younger he can ride this out past the 10 years. Dx is based of symptoms over the years and we know since 2007 he’s been Experiencing a lot of symptoms. The gold standard dx is after death via a autopsy. But we don’t want that to happen. So we manage his symptoms and work around his few good hours and his bad days of flares. MSA is so rare that those dx stats are 2 in every 100,000 people. Much rarer than ALS. If you ever need any resources Philip M Fortier is an amazing advocate for MSA.
Although he deals with several co-morbid diseases including the rare protein that is attaches to his immunoglobulins (5% of cases world wide) that causes his auto immunity and skin disorders. He fights everyday to not let it get to him physically. But those small physical issues are starting to affect him on a daily basis. We cherish everyday. Some days are so bad it hurts us as a family but if you can imagine the mental health of someone dealing with constant issues all day long then you can understand why he is the way he is. But I give him a lot of props for his effort and not trying to find the easier way out of life. Because if you know us extremely well, there have been many times where his mental health was so poor and his body is beaten up by all these diseases he wanted to end his life.
I am not ashamed to talk about these things and be opens in fact I am more than happy to talk about them from time to time because it’s the true nature of his co morbid diseases that will never be remission and there is no cure.
Yes it sucks but I am happy to have him in my life and raising our little girl.
I love him so much that everyday is a blessing.
of msa/p 3 yrs ago. now in whrelchsir, bad tremors, swallowing, speech, cognitive isdues. suddenly progressing quickly. is this
how it goes? how do we know when its final stages?
whst can i do to hrlp her?
“Kate, you need to come now.”
This was the voicemail I listened to when I first got back to the office, following an unanswered “I’m home!” text I sent when I landed in Boston after a work conference in San Diego. I heard the young Italian doctor’s voice, and I knew. This was it.
The strong man that was my dad had been slowly whittled away by multiple system atrophy (MSA) for 5, maybe more years. My father, whose hands had built office buildings, restored craftsman woodwork in buildings across the city, and put his mark on countless houses across the state before his muscles betrayed him. My dad, who had taught me to be proud of being smart, had laced my brothers’ first pair of hockey skates and seen every one of their games over 2 decades, had carried our dog home after she was hit by a car, before he stopped being able to walk unaided. My dad who had watched every Bruins playoff game with me, who had forked over dollars so that his young daughter could put money in every homeless man’s cup before forming words became an exhausting effort. It started with a lack of balance. An inability to get his arms into his jacket as we left our regular dinner in the North End that embarrassed him in front of tables of strangers. It was ending in a hospital bed at MGH. A bed we were supposed to leave together for home the week after I landed from California. His home, that he built, with a deck overlooking a deer run.
It didn’t matter that we’d FaceTimed the day before. That we had made plans for him to live out his last days in the house he’d built from the ground up, with my brothers’ hands on the beams of the foundation. MSA didn’t take notice of the fact that we still had laughs to have, childhood antics to remember, weddings to dance at, stories to regale each other with. MSA didn’t care that this was a man who ate bagels and fruit salads with me each summer in front of the World Trade Center. MSA didn’t care that we spent years as a family watching fireworks on the hood of our minivan in small town USA. It’s time. Two words that made all of these memories collide with the reality that the last grains of sand were running through life’s minute timer, with the words “how soon can you come?” driving an ice pick into my heart.
I switched to autopilot and called back. I can be there in 20 minutes.
I remember noticing that his hands slowly stopped squeezing mine when we said hello. His legs stopped taking steps toward me to give me a hug. His speech slowed as he labored to form the words to tell me he loved me. Always, though, a smile graced his face, gritty and determined and optimistic.
In the weeks before he died he fought to hold on to life. We planned for what time we had left together. We prayed with each other, begging God for a miracle that I knew wouldn’t come but held on to for his sake. We forgave the wounds of a childhood years gone by. We endured every indignity in the hopes that it would give us just a few more moments together.
In the weeks after he died I learned how much he had hidden from me. Falls. Ambulance rides. Accidents. I also learned that he had left an indelible mark on other carpenters who had been encouraged and inspired by his work. He had mentored young dads and helped them make a living. He had inspired his neighbors with his sarcastic sense of humor in the face of a huge battle. He had lived an entire life of goodness that I hadn’t seen.
“You have to come now.”
The hospital staff brought me to him and I laid next to my dad, holding onto him tightly as if I could keep him with me forever if I didn’t let go. I called for a priest for last rites and I watched his eyes gazing to a place I couldn’t see. I called family, and one by one they arrived and their tears wet his face. I called for another priest. We prayed again. I answered questions about what my dad wanted. My brothers sat by him, giving me a moment’s rest from my vigil. Death entered the room, with a smell that reminded me of a wet penny, and a limbo that evaded time set in. I told my father it was okay to let go, that he had fought harder than I ever could, even as he told me was scared. I sobbed, holding his hand to my heart to show him where he’d live as soon as tomorrow came.
Quietly, nurses moved us to a private room, sent sandwiches, left us alone in honor of the solemn journey we were on. We were an unwilling partner in a well orchestrated effort to distance our grief from other families who were living with the hope we had ignorantly enjoyed just weeks before. We stayed together for a few hours, and slowly everyone left. “It was always meant to be you and him, Katy,” my mother said as she left.
“You have to do this,” I told myself. I laid by his side, holding tightly, wondering how many countless families had been in this same room, begging silently for the nightmare to end.
I laid next to him for what felt like an eternity. Sleep evaded me. Each hour the nurse came to the room. The nurse we had joked with days before. The nurse who had given my father his last shower, a grown man bathed and dressed by a young woman. Each time I whispered to her – “I promised him no pain. He’s in pain. Please, more meds.” And, at 3 AM, when all we exchanged was a glance, traded over the very slow, rattling breaths of the father I adored. “More. I know what it means.”
In the hours between night and dawn, my father went ahead without me. When I he closed my eyes for just a few minutes, without even realizing it, he left, sparing me from seeing what it looks like when the heavens open. I felt a hand on my foot, his nurse rousing me to tell me he was gone. A resident we barely knew pronounced time of death but I immediately knew she was wrong. My father had stopped living here, but he wasn’t dead. Someone so great, so much larger than life, couldn’t die. He’d be with me, and my brothers, until the moment when we’d find ourselves in a similar hospital bed.
They left, and I was alone. The sun was rising, calling for the first day of a new life on the other side of the river. I laid back down next to my dad.
Hours passed before I relented my bedside vigil, letting his favorite nurse come in to bathe him. I left his fleece pants and gray thermal shirt by his bed – a final uniform for a man who had passed most of his days in jeans and a cutoff tee shirt. I stumbled down the hall, clutching his backpack like armor, avoided eye contact in the elevator, and found a cab outside.
“Charlestown, please.” But what I meant was, “anywhere but here.”