5 years later...

[laroux]

Well, it has been 5 yrs next week since a proper diagnosis was made. I participated with writing posts and responding to others for the first couple of years, then I gradually withdrew. I've continued to read posts and occasionally (few and far between) witten my own or responded to others. I remember when I first found this site, given to me by the neurologist, I couldn't fathom the idea of my husband ever being in the later stages of this disease. But, here we are, our story is like so many I've read. Bob is mostly bed bound now, his eyes close involuntarily, he cannot communicate ( can't even use his iPad anymore), only a hand squeeze or occasional blink for a "yes". He had pneumonia a few weeks back and the staff at the long term care facility were treating him with end of life care, the doctor gave him 2 weeks, but... he recovered from the pneumonia. Now he has been hit with a UTI. Every time there is an infection, he seems to become weaker. He is completely aware of everything that is going on, he is a mind trapped in a body that has been stolen by PSP. Damn this unrelentless disease!

Joan

[easterncedar]

Hello, Joan. I know pretty much what you are going through. Just wanted to send a hug. Love, ec

[aliciamq]

Wow ~ 😕 So sorry, Joan. I think we are not far behind you😑

[BandT]

I am so sorry for you both. Sending hugs x

[am2015]

We're at the same stage with my mum, just heartbreaking. I just pray for ease. I'm so sorry.

[am2015]

We're at the same stage with my mum, just heartbreaking. I just pray for ease. I'm so sorry.

[am2015]

We're at the same stage with my mum, just heartbreaking. I just pray for ease. I'm so sorry.

[abirke]

Mind trapped in a diseased body...so true....

many hugs to you and yours. My husband died (march, 2017) the same month he was diagnosed (march 2013). Tomorrow will be our first Thanksgiving without B. I pray we can manage to be thankful....though quite frankly we have been doing our day to day life pretty well....but these special moments may be more of a raw slap than usual....I just prayed for Nanbabs to be comforted and I better do the same for my family as well...

I am sorry for you and your family and most certainly for your husband. Keep close to each other and try remembering life as it used to be.

Do Well

Andrea

[laroux in reply to abirke]

Thank you and happy thanksgiving 🦃

[Rufflehead]

Sending you lots of love. It was the same for my mum. It's heartbreaking. You summon up strength from somewhere to get through it, but it is so so hard to see someone you love suffer so much. My mum passed away peacefully in Feb. She had been diagnosed 3 years ago and we think she had the disease for about 10 years. It shatters your life to pieces.

We only discovered this website last year, but it is a lifeline to know you're not alone.

Sending you love and strength x

[Heady]

Hi Joan, yes, it's so sad to see someone you love, locked into this dark, evil world of PSP.

Sending you a very large hug and much love.

Lots of love

Anne

[catherine_h]

It is such a relentless disease, and knowing the person who u love is inside aware of their suffering is heart wrenching. I guess try and remember the person as they were and chat and comfort them with touch. I dread what lies ahead for us,but it's a cross road with neither path being the easier option!sending you strength xx

[laroux in reply to catherine_h]

Thank you Catherine