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.

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This organisation might be useful to you:

And this organisation might be a good place to start when it comes to planning ahead:

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?
Helpful Answer (7)
Reply to Countrymouse

MSA itself is not fatal. At 77, he is older by 20+ years than most men who get diagnosed with MSA. Given his age, you can plan on making similar changes to those needed for aging in place. Grab bars. Help with ADLs. The Multiple System Atrophy Coalition has lots of good information.
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Reply to NYDaughterInLaw

If you decide you want to try to stay in your home, for most stairways--including those that make a turn at a landing--you can have a stair glide installed. It's not cheap--I 've done it--but it's very useful. The expense, BTW, counts toward a medical deduction, which can help quite a bit.
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Reply to caroli1

First, I'll acknowledge your challenge is difficult and your fear is justified. This is an extraordinarily difficult passage of life. Many of us have to deal with our spouses and ourselves decline and disabilities without aide of family or children. And, for some, the family and kids can be neglectful, abusive and exploitive. I suggest, taking a deep breath and starting with your now situation. If you think you want to do the "long haul" where you are, then make a list of what adaptations you will need to make to survive, be it move the furniture, get railings, order groceries online for home delivery... or, find an alternative situation. If you have a senior center nearby, visit it, and check out the resources. Why we are fiscally gouged every step of the way, is part of the nasty challenge of our culture. A darned shame, but a reality.
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Reply to cwinter

The OP's profile statement:

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.
Helpful Answer (3)
Reply to Countrymouse
Llamalover47 Aug 25, 2019
Countrymouse: Thank you for posting the OP's profile statement.
Information for anyone, like me, who wasn't previously aware of MSA:

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
Helpful Answer (2)
Reply to Countrymouse
LexiPexi Aug 25, 2019
It's all quite confusing. My now 75 year old husband was originally diagnosed with Parkinson's Disease in 2002. Then sometime later, MSA, then Progressive Supra Nuclear Palsy, then something else, and now Parkinsonism's. He seems to have a lot of symptoms (including dementia and is clinically blind) from a number of the different neurological diseases. It's all bad and progressive. Nothing 'really' helps and as everyone knows, there is no cure. My biggest suggestion is exercising both the body and the brain.

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.
You are very smart in wanting to think ahead, espeically in regard to the "treacherous stairs." Do you have a long term care policy? Perhaps it's best to sit down with your town's social worker. Start there. He or she can guide you.
Helpful Answer (1)
Reply to Llamalover47

Not sure if you have the resources or the opportunities where you live but perhaps an "aging in place" facility might be your best bet.
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!
Helpful Answer (1)
Reply to Lyecats

Yes a social worker can guide you You primary can place a order for nurse on call to come evaluate needs You will need someone you trust to help you you need a team if your considering keeping them home
Helpful Answer (1)
Reply to Sduval

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