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It's a common thing here in Florida, but I think having some reserves financially is part of the picture. A couple can live independently in these facilities and as the needs for care increase you move through the phases to skilled nursing. This is especially helpful if one spouse is likely to need more care while the other may need some care but less. At least you stay together and get appropriate care.
MSA is a diagnosis that really can't be confirmed until death. You are right that you will only chase symptoms but the diagnosis should be weighed against other atypical parkinsonism's. My mother had been diagnosis with Corticobasal degeneration in 2017 which was recently rediagnosed as possibly MSA, so I feel your concern, it's real and a hard road for you also if you have health challenges.
My mom and I have chosen to donate her brain to the brain donation network. I have learned misdiagnosis is common with this kind of disease and I want to find out what she really had after its all over. I also use a Yahoo support group for corticobasal degeneration (CBD) which is helpful for resources (and venting.)
Prayers for your health and strength to carry through!
https://www.multiplesystematrophy.org/about-msa/
And this organisation might be a good place to start when it comes to planning ahead:
http://www.carenorthcarolina.org
How long have you been married to your husband?
What are the family's relationships like? - do you get on well with one or both children?
Is the local child involved in your family life?
Is your husband willing to share his personal and medical information with them?
Multiple system atrophy or Parkinson's disease?
A person is more likely to have multiple system atrophy rather than Parkinson's disease if:
their symptoms have progressed rapidly – a person with Parkinson's disease deteriorates more slowly
they've experienced falls in the early stages of the condition – this isn't a typical symptom of Parkinson's
they don't respond well to levodopa therapy – levodopa can significantly improve symptoms of Parkinson's disease
their speech is severely affected – this isn't a typical symptom of Parkinson's disease
they gasp and breathe noisily – this isn't a typical symptom of Parkinson's disease
If one has a bucket list - do it now.
Get all of your paperwork in order and anticipate (the best one can) for the future. One never thinks they are going to spend so much of their retirement funds on medical (caregivers / redoing home, etc.). Try to find a financial solution for the surviving spouse - who may or may not out live the patient by twenty plus or minus years.
Sadly, new statistics show 63-70% of the caregivers die before the patient.
My husband was diagnosed with Multiple System Atrophy today. He just turned 77, older than most when first diagnosed. I’m 55 and also have serious chronic illnesses for which I am disabled. I am ambulatory and have been experiencing improvement since beginning a new treatment. However, I am limited in energy and intermittent pain which reduces my stamina. We have no children, however my husband has two children from his first marriage. One lives close by and the other about 5 hours away. I handle all of our day to day household business as well as cooking, cleaning, laundry, doctor’s appointments and care of our dog. We live in a two-story house with treacherous stairs that are entirely too steep. I don’t know where to begin in caring for my husband, and securing our family financially, arranging care for my husband (who can no longer drive) but is ambulatory and currently has no need of assistance. We both feel we need to get out of our home sooner than later. Trying hard not to panic.