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Old 05-21-2007, 02:56 PM   #1
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Join Date: Feb 2005
Location: london
Posts: 608
layla= HB User
please tell me what to do


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

Last edited by layla=; 05-21-2007 at 02:57 PM.

 
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Old 05-29-2007, 07:19 PM   #2
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Join Date: Oct 2006
Location: Boise, Idaho
Posts: 159
rhales199 HB User
Re: please tell me what to do

Hi! I'm not sure if I have much advice, but please know you're not alone!
Don't feel selfish for coming here and 'ranting'. You give so much of yourself in trying to help your husband, you need aplace to come rant once in a while!! (we all do!!).
Although your situation is different than mine, there are some similarities.
My hubby, Ty, 33, has Spastic Cerebral Palsy. When he has really bad spasms, he has to take Baclofen. Is that something that he could take (if it's even available where you live)? I've also heard that Baclofen is often given to patients who have MS or are paralyzed, to help with their spasms. I've also heard that Valium is sometimes used for muscle spasms.

can he wear his arm in a sling? Would that help support his arm?

Which foot does he get drop foot in- left or right? Since it's his left arm that doesn't work, if the drop foot is his right foot, he should be able to use a cane .I'm not sure on this, but using a cane might help his balance. (I owuldn't blame him if he didn't want to use a cane though-- I'm 30, and had to use a cane a few months ago due to foot problems, and I would only use it when I absolutely needed to!)

It is very hard on a adult male (especially a husband, who wants to fulfill his role as provider).My husband is 33 and only worked maybe 3 years of his life, mainly becuase employers don't bother to see past his disabilities and see that he in all actuality is a very capable person.

As far as Dr.s', i think a lot of us on this board have felt like they don't tell us anything, or that the only way we can get help is for us to ask THEM for it-- I know my husband & I have had to do it!!
And, yes, there are times that i feel like the only way things ever get done is if i do them!!

How do I cope? Not always the best way, i tell you that right now!
Some things that help me cope are to go for walks/ get some exercise, taking a long bath at home when i can, getting out of the house/ dr's office just for fresh air or a chance to clear my mind.
Make sure to take time for yourself, even if it's just a minute or two a day. Reading, doing crafts, playing games are all good things we all can do to help us get our minds off the days stresses!!

Take care!!

Becky

 
Old 05-30-2007, 01:39 PM   #3
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Join Date: Nov 2006
Posts: 76
dolores79 HB User
Re: please tell me what to do

Hi.
First off I should tell you I'm not a caregiver but a 35 year old female that also feels 75. My husband was my caregiver through my critical times: I had a stroke that affected my left side,no arm/hand use and I wear a brace on my left foot for dropped foot and balance. Have you seen a phisiatrist (sp?)? he would be the one suggesting the brace (AFO: ankle foot orthosis). I also take baclofen daily (70mgs a day distributed in 3 takings) for espasm and involuntary muscle contraction. While those things won't help you, they'll probably improve his quality of life, thus helping with depression.
Don't feel guilty for ranting..as a carereciever I felt that guilt as well. I felt I was ruining everybody's lives and it that my husband and kids would have been better off if I had died and that they had gotten the rotten end of the deal. The only thing I can tell you to somewhat help you is to talk to him about those frustrations and feelings; most of the time my husband and I found out we were feeling the same things: isolation, guilt, anger, frustration. I was also young and had a really hard time asking for or recieving help. But I was soo thankful for everything he did for me though I didn't always express it.

I am so sorry you guys are going through this ordeal. I'll pray things get better for both of you and hope you find the help you are so desperately searching for yourself/him.
Hugs
Dolores

 
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