Multiple System Atrophy

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    Sponsored by
    Gail H
    Gail H @gail-h
    contributor

    The Condition I Didn’t Know Existed in People with Parkinson’s and Diz

    I’ve had symptoms of dizziness and lightheadedness for most of my adult life. I would experience extreme dizziness after I stood up, and the feeling that I was going to black out was always around me like a cloud. I tried to hide my symptoms at work, and I would spend most of the day sitting. These symptoms made my world smaller and smaller. I started staying in my house more and more. I started to avoid driving. If I was at the grocery store and the lines were too long, I would just leave. Staying home isn’t like me at all. I was an elementary school music teacher, and I play the recorder and harpsichord and conduct two choruses. I also have two wonderful children and two grandchildren. But I didn’t have the right vocabulary to talk about my symptoms with my doctor. I was diagnosed with Parkinson’s disease, a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands, 17 years ago. After I found out, I thought this dizziness and feeling like I was going to black out was just part of the disease. After I retired, I moved to Florida and started seeing a new neurologist who was very savvy. I told him about my symptoms, and he took my blood pressure sitting and standing. My previous specialist would only take it while I was sitting down. It turned out that I had a condition called symptomatic neurogenic orthostatic hypotension (nOH), which causes a significant drop in blood pressure when changing positions or standing. That’s why I kept having that feeling like I was going to pass out. I was so relieved when I found out my symptoms were something other than Parkinson’s. It felt like I wasn’t crazy. My doctor had me start doing things like drinking more water and adding more salt to my diet to help with my symptoms. Then, he told me about a clinical trial for a drug called Northera (droxidopa), which was being studied in people like me who have symptomatic nOH. I was so glad to know there was something I could try, to see if it would help manage my symptoms of dizziness and feeling like I was going to black out. So I decided to participate in the clinical trial. When I first started Northera, I saw my doctor every day or every couple of days to titrate my dose until we got it just right. I still do the non-medication things to help manage my symptomatic nOH, like carrying water everywhere I go, adding more salt to my diet (even though I don’t love salty food!) and sleeping with the head of my bed elevated. But Northera has helped relieve my dizziness and the feeling that I’m going to black out. I don’t experience those symptoms now when I stand up. For anyone reading this, know that Northera may not work the same for everyone, and you have to make sure you tell your doctor about any other medicines, vitamins and supplements you use, to make sure Northera won’t cause any side effects. My doctor was also very clear that I should take my last dose at least three hours before bedtime because it can cause high blood pressure when lying down, which could cause serious side effects, and if not managed correctly, could lead to stroke, heart attack or death. Be sure to talk to your own doctor about the potential risks of Northera. I want people to know that just because you have Parkinson’s, that doesn’t mean you can’t manage the symptoms of nOH. For a long time, I didn’t have the right words to describe what was happening to me, so I want to tell my story in case others don’t know how to talk to their doctor or what to ask for. USE NORTHERA (droxidopa) is a prescription medication used to reduce dizziness, lightheadedness, or the “feeling that you are about to black out” in adults who experience a significant drop in blood pressure when changing positions or standing (called symptomatic neurogenic orthostatic hypotension (nOH)) and who have one of the following: – Parkinson’s disease (PD), a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands – Multiple system atrophy (MSA), a Parkinson’s-like disorder with more widespread effects on the brain and body – Pure autonomic failure (PAF), a neurodegenerative disease that results in frequent drops in blood pressure upon standing – Dopamine beta-hydroxylase deficiency, a condition where the body cannot make enough of the hormones that help regulate blood pressure – Non-diabetic autonomic neuropathy, an inability to maintain blood pressure upon standing that can be caused by a number of rare diseases Effectiveness beyond 2 weeks of treatment has not been established, and your doctor will decide if you should continue taking NORTHERA. Important Safety Information Do not take NORTHERA if you have a known allergy to NORTHERA or its ingredients. NORTHERA may cause high blood pressure when lying down, which could lead to strokes, heart attacks, and death. To reduce this risk of supine hypertension, take your late afternoon dose of NORTHERA at least 3 hours before going to bed. Neuroleptic malignant syndrome (NMS) is a rare but potentially life-threatening side effect reported with NORTHERA. Call your doctor right away and go to the nearest emergency room if you develop these signs and symptoms: high fever, stiff muscles, movements that you cannot control, confusion or problems thinking, very fast or uneven heartbeats, or increased sweating. NORTHERA should be stopped immediately if NMS is diagnosed. If you have coronary artery disease, irregular heartbeat, or heart failure, NORTHERA may worsen the symptoms of these disorders. Call your doctor if your symptoms become worse. NORTHERA may cause allergic reactions. Stop taking NORTHERA and contact your doctor right away, or go to the nearest emergency room if you experience any signs or symptoms of an allergic reaction such as: fast heartbeat, nausea, vomiting, swelling, trouble breathing, hives, or rash. NORTHERA contains tartrazine (FD&C Yellow No. 5), which may also cause an allergic reaction, especially if you have had a reaction to aspirin. The most common side effects with NORTHERA are headache, dizziness, nausea, and high blood pressure. Taking NORTHERA with other medications may cause side effects. Tell your doctor if you take prescription or over-the-counter medicines, vitamins, or herbal supplements. You should not breastfeed during treatment with NORTHERA. If you plan to become or are currently pregnant, talk to your doctor as it is not known if NORTHERA could harm your unborn baby. Take NORTHERA the same way each time, either with or without food. If you miss a dose of NORTHERA, take your next dose at the regularly scheduled time. Do not double the dose. Please see the full Prescribing Information, including Boxed Warning for supine hypertension, or go to www.NORTHERA.com. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. ©2019 Lundbeck. All rights reserved. DRX-B-100300

    Community Voices

    expectation.,., glad to have found this site! my bestie
    started with urinary
    issues about 10 yrs ago. she spent years having tests & got
    diagnosi

    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?
    #MultipleSystemAtrophy

    Community Voices

    besties

    <p>besties</p>
    Community Voices

    An unanswered text led me to a last goodbye.

    “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.”

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