I use this board alot, but somehow have only just come across you guys.
My husband has hnpp a progressive disorder that isnt too bad if your lucky, unfortunatly my dh isnt, and slowly over the last 10 years his upper left arm has become so dead his shoulder is now permanently dislocated as it isnt strong enough to hold the weight of a dead limb. Thankfully he can still use his hand on that arm. The problem really started about 2 years ago when his hnpp got worse very quickly, he now has problems with his legs.
Because of the nature of his disorder no one can tell us what the future holds.
In 10 years will he be in a wheelchair most days, he has involuntary muscle spasms which often cause him to spill hot coffee and his arms and legs are in a constant state of numbness pins and needles, he has carpel tunnel symptoms in his hands and has drop foot constantly which causes him to lose balance and of course he cant lift his arm to stop him falling so often tumbles flat to the floor, if he sleeps awkward then his head takes the pain and he cannot move his head.
My dh has always worked until a year or so ago and is so depressed (I cant blame him) he doesnt want everything doing for him, and he hates not working. He is 27 and feels 75 as he tells me. We are both concerned for the future but he is terrified.
I have done everything i can and then some.... we have had no help from the drs, i had to email an american for advice, and he was brilliant!!! He enabled me to tackle everything and get brad the right support. But its all half hearted from the nhs, they dont want to help him... and we are left struggling to try and live.
Its like im stuck where ever i turn there is a brick wall, everything is down to me to find even telling the dr who to refer us to, and asking for an occupational therapist. It seems there is no advice or help out there, i have to tell every one what to do and i have no one telling me... why????????
Im not a dr not a therapist not a specialist not anyone, so why is it up to me???
Why cant They tell me???? Even the therapy appointment he went to they managed to make him really feel like there was no help for him, yet i am here constantly trying to find help!!! He wants some one to talk to, so i now have to find him some one to talk to because if i dont it wont get done!!! thats how everything is in my life, its i dont do it, it doesnt get done, if its not in my head it doesnt get dealt with. I feel like the buck stops with me constantly!!! Im having therapy myself!!!! I feel like i now live in a mad house.
Ive realised that this has turned into a rant and i really feel selfish.
But thats the point im so frustrated but feel so guilty for being frustrated. I just dont know what to do. How do you all cope??
sorry for such a long post, thankyou for taking the time to read this