Hi stephanotis, you are very welcomed to join us. The support on this site is phenomenal, we are all on a similar path. Are you in the UK? Lots of love Nanny857 xx
You are most welcome, but I wish that you did not have the circumstances to need this forum. All of these neuro degenerative diseases are so cruel and not only take a toll on our loved ones, but also their families, and especially us caregivers. There is genuine love and compassion here. It has been a much needed source of support for me.
I wish you strength and wisdom as you address your husband’s medical difficulties.
Hopefully the site will offer some useful info. There are a great many people here who have a wealth of knowledge in the care of family members with these diseases.
You are so welcome. This is an amazing site. I lost my husband to PSP last November.
Not only do you get support and advice to help you on your journey but the care, love and support is invaluable. Even the smallest of things posted on here re health or where you may be able to obtain information, someone will do their best to help you.
This is the place to be. Everybody cares and offers support on anything. I have needed this forum at times when I felt everything was hopeless and have been uplifted by the support of friends on here.
We all care. I wish you hadn't needed to join (only because these illnesses are so horrid) but now that you have there will be support, care and love in abundance.
How long has your husband had symptoms...and how long since his MSA diagnosis? My husband had CBD but there are 2 people in my outer circle who have MSA...
He had Parkinson's symptoms about 4 yrs ago. Got different opinions from several doctors. Two doctors said Parkinson's, another Doctor thought ALS, and this year another Neurologist said MSA.
Stephanotis, the link above (should) go to a youtube video about different and overlapping types of atypical parkinsonisms. I found it very clear to follow. It IS a little old now but still accurate, I think. You might be interested in it.
Welcome Stephanotis, sorry you need to be here. It is amazing that this is the doctor who diagnosed your husband. She seems very good.
My husband was told he had PSP with signs of MSA but later told it was MSA. He didn't have an autopsy and although I tried to donate his brain it just never happened. So I am not sure what he had. He definitely had signs of both so very hard to know?
The people on here are great. They will pick you up when you fall and tell you all manner of things as you go along this road. By the way there is a Multiple System Atrophy Trust. It is based in the UK but there maybe something else in the US? Look them up on the internet and ring them. They will tell you if there is anything in the US. There is also a pack they send out and further info on their internet site. They a have a web site too although it's not as active as this one but worth joining that too I think.
I have an old school chum friend with MSA. He and I talk online frequently, comparing notes on what's going on with my PSP husband. Glad you felt good to share.
Welcome Stephanotis, as I understand MSA, PSP and CBD can overlap and are similar diseases. This site helped me through my husbands i,ness, he passed away in May bu almost all the information and support I received was from here of the Hospice. Sorry you gave to b here with us but you will find it invaluable.
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