Another Newbie: Have monitored the site for... - PSP Association

PSP Association

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Another Newbie

Zeberdee profile image
7 Replies

Have monitored the site for some while and have found a wealth of information. Hubby was diagnosed with PSP in 2013 and now in advanced stages in this unwelcome illness. CHC has declined funding and naturally its appeal time. Therefore I would be grateful to receive advice from those of you who have any experience in this process.

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Zeberdee profile image
Zeberdee
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7 Replies

Welcome to a group no one wants to belong to. You will find a wealth of information or just to let you know it ok to rant,scream or just cry.

Take care of yourself

Dee in BC

Zeberdee profile image
Zeberdee in reply to

Thankyou have days when tears are non stop. Today being one when my lovely hubby is totally non-communicative. I ask what is going on in his head. I cannot bear this dreadful illness. J

in reply to Zeberdee

I truly do understand, my husband is 64 ,we have been togther for 37 years and was my best friend ,we did everything together. Now I'm a caregiver to for the most part to a stranger .I miss him.can't say it's going to get better ,it's only going to worse.

Hang in,take your me time when ever you can grab it.

Wine a clock here and they are all in bed ( hubby and dogs)

Dee in BC.

doglington profile image
doglington in reply to Zeberdee

yes. its the worst bit, isn't it ?

sometimes i'm doing all right, tending to him, and then i remember him as he was and can't bear it. but have to.

love from jean xx

Zeberdee profile image
Zeberdee in reply to doglington

Gets difficult remembering the good times as PSP takes over and it's in total control. Jxx

doglington profile image
doglington in reply to Zeberdee

so true.

xx

Baytalon profile image
Baytalon

I am not where you are yet, but I see the progress and I fear what is to come. One year ago, I started noticing changes in my husband. I feared he might be in the early stages of Alzheimer's. When I finally got him to a neurologist in November 2016, he was diagnosed with PSP. We are still early on. I don't know how fast the downhill slide will come, but I know it is coming and my heart breaks.

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