May I join you here ?: Hi, I have been... - PSP Association

PSP Association
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May I join you here ?

stephanotis
stephanotis

Hi, I have been following this site for a while now but have not introduced myself.

The reason was my husband's diagnose is MSA and what I have been reading here are about PSP and CBD.

Some of the symptoms are the same with PSP or CBD . He is drooling a lot ( Botox didn't help much) and his head is down to the right.

Neuro opthamologist said he doesn't have PSP although his eye sight is getting worse.

All of You have been so nice supporting each other.

23 Replies
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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

Yes welcome to the site, someone always ready to help with any problems xxxxx

Thank you ? I am in the US.

Which state? (Always curious to see if someone is nearby.)

And, welcome!

Southern California .

you are close to members Enjoysalud and maybe Christine47...

Racinlady’s in CA also.

Michigan!

Welcome. I'm sure the caring issues you face are the same.

Jean xx

Welcome :)

So sorry you are facing MSA.

Best to you and yours

:)

Welcome. Symptoms of these diseases can overlap. People with PSP and CBD may exhibit some MSA symptoms.

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.

Blessings,

Bobby

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.

Ron

You're welcomed with open arms, feel free to post anytime x

Thank you all. He is also on feeding tube almost two yrs now.

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.

Love to you and your husband

Pat

Welcome Stephanotis :-)

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...

Anne G.

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.

Warm regards,

Anne G.

OMG, she is the Dr that diagnosed my husband as having MSA.

Thank you .

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.

Best wishes.

Marie x

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.

Love Kate xxx

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