MSA...What they don't know.
My story is really my family's story.
In 2010, after a year or so of steadily more frequent falls and dropping things and such. Many different Doctor appointments and being told, "You drink too much", "You abused your body too much when you were younger, now it is time to pay for that." My husband endured that kind of humiliation many times from health care professionals, including being tested for syphillis! Finally diagnosed with Parkinson's in 2009. Medication did not help at all. Finally a neurologist diagnosed him with MSA. Of course we had never heard of it and did as much research online as possible. By October 2010 my husband placed himself in a nursing home as the progression of the disease was so rapid that we could no longer care for him at home. I had to continue to work because I carried our insurance. The physical decline is awful, but the mental and emotional aspect is much worse for the patient and family. I watched my once sharp sharp minded husband slowly decide that he wanted to die. The body completely gives up, but the brain is still working and allowing you to know exactly what is going on. The loss of human dignity is probably the worst "symptom" this disease has to offer. I lost my husband of 41 years in June of 2013. A shell of the man he used to be. The day he went into the nursing home, 10/03/2010, he weighed 261 pounds. When he passed on 06/27/2013, he weighed 131. My first thought was, "Thank God, he's no suffering any longer." Jim donated his body and brain for research. They still have him and I pray every day that he can help find a cure for this absolutely horrific disease. I guess what they don't tell you is how hard it is going to be emotionally and how many health care professionals just don't have a clue. To anyone starting this painful process, please research and print out what you find, carry it with you and offer copies to all caregivers so that they can know what to expect. I wish you all strength and prayers.
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