Hello I'm new!: Hello all. My husband was... - PSP Association

PSP Association

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Hello I'm new!

pongo1234 profile image
10 Replies

Hello all. My husband was diagnosed with PSP in May 2016. He's 66, we have just seen Dr H Morris in Queens square, London UK and he thinks he is in the early stages. It has taken me some time to understand the condition. I am slowly coming to terms with it and am finding his site extremely helpful. I feel we have a long way to go but am glad I have this site for my questions and worries. Thanks everyone x Pongo

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pongo1234 profile image
pongo1234
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10 Replies
Kevin_1 profile image
Kevin_1

Hi Pongo

So sorry you have to go down this road.

PSP is dreadful, but you can expect a lot of good times with your husband yet.

My Liz is under Prof. Morris too.

His specialism and research area is PSP/CBD.

We find him very supportive and pro-active. He is very good at controlling symptoms with meds. too. Your off to a good start!

I too find this site helpful. There are people here with a lot of hands on experience and we are effectively pooling a vast amount of clinical expertise input from around the globe.

Welcome

x

Kevin

pongo1234 profile image
pongo1234 in reply to Kevin_1

Thanks Kevin

easterncedar profile image
easterncedar

Welcome, Pongo. My guy was 65 when diagnosed, and we are coping pretty well five years in. There are lots of things you can do in the initial stages to make things easier down the road, and I wish I had known. Exercise and speech therapy help most when started early. Do what fun things you can now. Glad you found us. Best of luck to you and your husband, ec

pongo1234 profile image
pongo1234

hello easterncedar

I think we our doing all we can , fortunately we have a fanatic family that have got us straight in to speech therapy ,and a coarse of physio therapy , what has helped a lot.

We have a very strong Christian Faith with which we could we could not get by with out ,

we go one day at a time ,and take each day as it comes ,

thanks for all your support

thinking of you all

Pongo

easterncedar profile image
easterncedar in reply to pongo1234

That's all good!

Julieandrog profile image
Julieandrog

Hello ! Each journey is so unique, start assembling your support network, hospice, social services, gp, district nurses, etc.

Have a good day

Julie x

Duffers profile image
Duffers

Hi pongo. Welcome to this site. Good advice to do as much as you can now while your husband is still able and ask, ask, ask on this site about absolutely anything. Someone's always got an answer or suggestion for you. God bless you both on this unwanted journey. Marie

daddyt profile image
daddyt

Sorry that you are here under these circumstances. That said, you have found a wonderful, supportive and experienced community to share your journey with. x

pzagy profile image
pzagy

Hi Pongo, we are all here for the same reason, to get answers to questions no one has the answers to and to help one another. I am here for my mother in law who has CBD, initially I ranted, then I listened now I try to give a kind word to anyone that needs it.

We are virtual buddies from around the world, I cannot imagine having to deal with this without everyone here...,

Hugs to you al

Paola

doglington profile image
doglington

Hi Pongo,

Welcome. Chris was diagnosed PSP in Oct/ 2013 just before his 80th birthday. He still would say he is happy, although his quality of life is so poor.

love, Jean xx

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