Living Beyond the Diagnosis

Coping with Multiple System Atrophy (MSA)

Coping with Multiple System Atrophy (MSA)

Let me get you caught up real quick. I have been diagnosed with Multiple System Atrophy or MSA, a rare degenerative neurological disease that is currently incurable. I’ve chosen to share this with my community 1) Because it’s quite cathartic 2) Explaining your terminal disease over and over again can be painful 3) I have the time, since I am somewhat homebound (Though as you learn more, you will see my wife & I are taking measures, to remedy that). But mostly because 4) MSA is a “Mystery” to most people. A silent killer without a face. So little is known about it and those who suffer from it do so in relative anonymity with many of them feeling as though there is little hope. I want those people to know there is hope and there is a place they can come to better understand what the hell is happening to them.

So I started this Blog. Beginning Nov 1st this Blog will chronicle my experiences at The Mayo Clinic in Rochester NY, as I navigate a Clinical Stem Cell Trial, designed to find a cure for this Mother F@#ker. Until then, this Blog is designed to get you all up to speed on what MSA is, what its symptoms and characteristics are, and what it’s like to “Cope with MSA”. To that end, I give you …

What is MSA? – Living Beyond the Diagnosis (copingwithmsa.com) https://copingwithmsa.com/what-is-msa/

Let’s “start at the beginning, a very good place to start”

Sharing this journey isn’t just about me; it’s about raising awareness for MSA and contributing to the incredible work of the Michael J Fox Foundation. https://give.michaeljfox.org/give/421686/#!/donation/checkout Won’t you please consider making a donation 😊

Thank you for being a part of my journey. 🙏💪

#MSAawareness #ResilienceInAdversity #MSA #MultipleSystemAtrophy #Parkinsonism

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Coach

With over 30 years of professional experience in the real estate industry, I am a driven, creative, and strategic innovator for real estate technology. I have led the business side of data exchange efforts to lower costs, improve processes, and increase data transparency and sharing, using emerging technologies like blockchain and AI. As the EVP of Strategy at Openn North America, I oversaw the launch and growth of a revolutionary platform that enables transparent and competitive bidding for properties online, with the help of generative AI and conversational AI. I am also passionate about sharing my knowledge and insights with the global proptech community, as the Southern CA Regional Chair of FIBREE, the leading international network for exchanging knowledge between the real estate industry, the IT sector, and blockchain developers. Additionally, I am an advisory board member at TLCengine, a platform that calculates the true lifestyle cost of any home, and a former radio talk show host on “Keeping it Real Estate” Radio. My specialties include early product design and development, human-centered design, management, leadership, and training. I believe in the power of blockchain and AI to transform the real estate landscape and create value for customers and stakeholders.

2 responses to “Coping with Multiple System Atrophy (MSA)”

  1. Linda Cullen Avatar
    Linda Cullen

    I am new to this sight. My husband was diagnosed with MSA in June of 2023 and started a clinical trial at Cleveland Clinic in July. How long he has had this I’m not sure. I thought he had a mini stroke at first. We went to a neurologist at the VA for two yrs. Not much help so decided to get second opinion at CC. He has had some bad falls down these stairs. The VA has put in a stairway lift. That has helped greatly with the stair problem. Now he is recovering from a bad fall in bathroom. 6 staples in his head. He blacked out. He has been on blood pressure medicine for many years. Neurologist thinks that needs to be adjusted. I have been charting standing, laying, sitting and can drop to eighties and seventies top number. I’m looking for any information on blood pressure. Thank you in advance.

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    1. therecoach Avatar
      therecoach

      Hi Linda, glad your here. Thanks for being a part of this community. I can only tell you what my experiences have been, but they do mirror what you are telling me, about your husband. My first physical manifestation of the MSA was thought to be a stroke, but turned out to be a reaction to the Orthostatic Hypotension, which comes as a part of the MSA. My BP fluctuates, on occasion as much as, 150 basis points. I had a Tilt Table test at The Mayo Clinic in which my BP went from 220 (Top #) and over a 4 minute period, plummeted past 70/50 to a state they labeled as UD. Which stood for Undetectable. I have blacked out 3 times. I have learned how to detect it’s pending arrival and cut it off before it happens now. I have found that lying on my back and elevating my feet above my heart will bring the BP back up. Trips to the ER are a waste of time, because they no nothing about MSA, and they cost between $2k – $5k dollars to fill me with fluids and drugs and send me home.

      If your hubby is falling often, or unsteady all the time. he needs a device to help him out. A cane. walker, or something else. I also suggest you find a Neurologist who specializes in Movements & Disorders. This is vital, because most straight Neurologists just don’t understand MSA. Check out this list for someone near you https://www.multiplesystematrophy.org/centers-of-excellence/?fbclid=IwAR2-N1qwM8AD7xbq14p2_vzFSbhBDx50lyUtg-1rVnUHNzjIH6o-XEXA6ag

      For your information, and please check with your Movement & Disorder Specialist (When you find one), I use a combination of Florinef & Carbidopa Levedopa to keep my BP in check and it has worked great. You also need to exercise, lose weight if he overweight (I was 270 lbs and now at 235), and eat Organic with mostly Fruits and Vegetables. You can read through my past blogs for that stuff.

      Some good resources to join for support

      https://msa.tradewing.com/community
      https://www.facebook.com/groups/48942097968
      https://www.facebook.com/groups/896361513781855
      https://www.facebook.com/groups/MSAtreatments
      https://www.facebook.com/groups/MSACoalitionPublicGroup

      If I can help in any other way, please reach out 🙂

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