Myself and my daughter look after my 56 year old exhusband. His diagnosis was very complex as he has several conditions which started about two and a half years ago. He was finally diagnosed in May 24. This horrifc diagnosis has taken everything from him. Hus mobility, his speech his independence the lot. I would never have believed something so cruel could ever be inflicted on a person. He was and still is the strongest person I know and us fighting it all the way. Right now I am writing this when in fact I should be up and out taking him to the gym on his walker where he will give it 100% ..I can't even get myself together let alone exercise, but I will do as it is helping stove this son of a bitch disease off.
He is so young with lots if symptoms , he has one side which is declared spastic and the other side us deteriorating., trouble swallowing, trouble with eyesight , breathing. The list is endless!
Is there anyone else with such complex diagnosis and young. I would appreciate to chat.
hi. I feel and u see stand your pain. My dad was diagnosed back in Sep 21 after a very difficult few years! Thankfully we finally got a diagnosis so atleast we knew what we were fighting. My dad was 62 at the time and had been struggling with work and day to day norms and it was so so hard.
We were devastated with the diagnosis and everything has been a daily battle. 6 months after the diagnosis I did a UK road trip with him and thank god I did as now we are in a sorry state. I reached out several weeks ago and discovered this chat network and also the group below by pure chance. I have had a chat with their team and as they best understand the condition it was reassuring to chat and discuss the help that they could offer including specialist glasses, disability blue badge etc.
I still feel that this is a very lonely battle and isn’t going to get any easier. But both the chat group and the website have helped even if the information/signposting came very late on.
Thank you for replying, I think you are right about about the group in that it is a great support. Just knowing there is somewhere to turn to where there is common ground really helps. I feel for you in this awful battle. We try to do as much as we can with him as his steam is running out quicker and quicker every day. Good luck
I am sincerely sorry this son-of-a-bitch disease has afflicted your family. You have every reason to feel overwhelmed and angry. It’s awful. No two ways around it. My husband was in his early sixties when we suspected it was neorological, he had PSP, we think, but in hindsight some of his subtler symptoms began earlier.
My husband was 56 when he got his diagnosis in 2021. He now has all the things you mention and more. He's lost his mobility and is fully wheelchair based. The one thing I have noticed is that services for these types of neuro illnesses are very geared to older patients; it feels like we fall down a gap sometimes.
It is rare to see another person post listing all 3- PSP, CBD and FTD. We have been dealing with the same triple whammy of diagnosis. My friend was diagnosed in Oct 22 at aged 58 with suspected onset 2 years prior. I have found one the most challenging parts of responding to this dreaded diagnosis is having him pigeon holed. We are constantly having to explain the complexities to health professionals due to lack of information and understanding.
I have found this site to be of great value. Although I just read posts and gather information predominantly, I see the level of care and support offered amongst all who join. I hope you find great comfort in this network.
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