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Old 20-05-15, 05:33 PM   #1
dmftp
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Default what next

So. The last appointment for my wife last week lasted 15 minutes where, of course, she got told everything was fine and left happy being told that all was ok.
She doesn't have to go back for a year. Things are not ok and she has changed. But what is the point? There's nothing I can do. So I suppose I just have get on picking up the pieces every day.
Disheartening. Tiring. I thought the people you see at the hospital are the experts on the illness.
I don't know what to do anymore.
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Old 20-05-15, 06:35 PM   #2
Allan
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Default Re: what next

Quote:
Originally Posted by dmftp View Post
There's nothing I can do. So I suppose I just have get on picking up the pieces every day. Disheartening. Tiring. I thought the people you see at the hospital are the experts on the illness.

I don't know what to do anymore.
.
Hi there

The Real Experts are the hd+people themselves and their family Carers - us. What we all deal with day-in-day-out is the domestic and social/antisocial reality of this god-awful disease.

Within the NHS it seems that some of the regions\trusts are trying to set up Multi-Disciplinary Teams [MDTs] consisting of a Neurologist; a Psychiatrist; a Psychologist; a Neuropsychologist; a Genetic Counsellor; a Physiotherapist; an Occupational Therapist; a Speech & Language Therapist; a Dietician; a Carer or Family Member; a Primary Care Doctor; a Dentist; an Optician; a Social Worker, etc.

In the meantime, though, it is up to us as individuals to do the best we can.

Five years ago I was "tearing my hair out" on a daily basis, running round in circles, banging my head against a brick wall - and all that stuff. Then when my son received his diagnosis in 2012 things started to change. I still had to organise everything myself though. Constantly on the phone and sending emails so that, after a short time, everything was soon in place: Physiotherapist; Occupational Therapist; Speech & Language Therapist; Dietician; new GP; Dentist and Optician informed of hd; and a Social Worker on board.

Then I constantly "badgered" them all on a regular basis, got them to sit up and take notice of what was happening in my son's world.

My advice to you would be to ask the HDA office for several copies of the relevant fact sheets and pass them on to the various professionals that you will be dealing with. Also, if you haven't already done so, contact your regional Specialist HD Adviser.

Best of luck

.
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Old 21-05-15, 12:20 AM   #3
shiraz
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Default Re: what next

Get back in touch with the consultant you saw - email them. Go to your doctor and tell them. Have a real firm sit down cards on the table talk with your wife about what you can see is happening, heck bring in the effect of it on your children, and get her to agree to go to her doctor and be truthful with you there also. Not easy = took me over 8 years of such talks/tears and promises...but eventually. Well, things got that bad that help finally came knocking on my door.....

I honestly don't have an answer coz it is very hard. I am a carer, not a wife anymore. A lot of it is to do with you yourself understanding that the behaviour is a result of HD and you have to change your responses and alter your expectations - you can't reason with it or argue. It makes for a more peaceful life - but we all have different circumstances and work/family pressures and responsibilities so there is not a one way fits all solution here. Unless you find a way through that is acceptable to you then sadly you will continue feeling as helpless and desperate and fed up as you sound. And that is a crying shame. You have to make her realize that this is not right.
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Old 21-05-15, 09:30 AM   #4
dmftp
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Default Re: what next

Thank you both. Think it's time to bite the bullet and sort things.
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