New here


#1
Hi

I've just joined, my husband has Parkinson's he was diagnosed 4 years ago at the age of 26, so very young for parkinsons. He has been having a very difficult time in the last couple of weeks due to medication causing dystonia. It will be good to have somewhere to come for advice as I feel helpless sometimes not knowing what to do for him.

K

#2
hello kdw , and welcome,

I am sorry that you husband is having such a difficult time. Dystonia can be a very painful condition. I would suggest that your husband talks to his consultant - maybe a "tweak" in medication may help. There is a very helpful publication "Muscle cramps and dystonia" available from PUK either on-line or on request by post. (Either go to forum home/publications or 'phone the helpline)

I wish you both all the best

#3
Thank you, we have seen his consultant twice and his PD nurse too,all the tweaking has not worked unfortunately, but we are back at hospital tomorrow. The dystonia society have given me the name of the consultant who specialises in secondary dystonia, so am hoping to be referred. Fingers crossed!

#4
Mine are too for you (fingers I mean) Good luck

#5
Hi KDW...

... one of those "can't sleep nights" and just seen your 'post'...

My goodness... you're a brave pair... but.. you've done the right thing in 'signing on' to the Forum.. You've seen already the thoughts and care
that annebernadette has shared - and that is typical of so many of the folk here. When I was first diagnosed I felt almost euphoric 'cos I knew something hadn't been right for some time, and my wonderful G.P. really stuck at it for me..

A day or two later I was far from euphoric - but I'm sure you and your hubby know
all the feelings and emotions.. But - after a while, I came on the Forum and poured it all out - the response was so heart-warming... and the folk on the HelpLine are excellent, too.

Sadly I can't comment with any "qualification" on your situation... doesn't it seem that PD is so individual to each of us?... But someone here will know - and even have personal experience...

What I'd like to leave you with is.... a very warm welcome.. empathy and
understanding... and the promise of our thoughts, etc., for you both... How did it all go, by the way?

Keep in touch... your part of us now! bursardavid.

#6
carnt sleep again

#7
hello Dadio
its midday here and sunny, and I feel like having a snooze. Never right is it?

#8
Just to say hello and welcome to KDW and I hope that you find some help for your husband.

glenchass

#9
KDW - Hello and welcome I hope you and your husband find the support in the forum beneficial. I also hope you got some help when you were at the hospital on Friday.
My thoughts are with you both

Helen

#10
Welcome to you and your husband. I was diagnosed at 57 and am now 63. This Forum is a good help to me. Polly xx

#11
Hi KDW, Geez thought i was a young gun at being diagnosed at 31 im now 50 i too suffer with dystonia but only with my left foot so far anyways,and yeh this forums has been a great help since ive been here, helped me when im down, when ive needed info plus gives me a lift to know that something ive said to others have helped them so welcome to you both to the parkinsonian nuthouse tea rooms !! hehehe

Hugh aka welshbearuk