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Old 09-07-10, 12:22 PM   #31
myrna
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Default Re: Book on JHD

I'm sure everyone feels that way. As Dave said, he posts on the topics he understands & I no longer post on subjects I don't really know about either.
No-one should feel guilty or that they are letting others down because its not as we would prefer it to be.

I could & probably should have been here for you more Paula & for anyone with jHD as I am a regular member with some experience, but I hope that you'll all understand that I had to take time out from HD subjects to allow myself some healing time. We all know, HD is an extremely painful subject without jHD & grief thrown into the mix.
But I am still here, you can message me anytime & I promise I'll get back to you. Having taken out the time I have, I am ready to get back on with it...as I've said, I feel much better & stronger again.
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Old 09-07-10, 02:12 PM   #32
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Default Re: Book on JHD

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Originally Posted by myrna View Post
Did you take a look at that link I posted up Deb? I'm just wondering if its what is in the book?
Sorry Myrna, I don't recognise that in the book. The stories were chapters of about 2-3 pages of parents' experience of living with JHD. Did you get the book? It has an orange cover. I will try to cut and paste a pic but if it doesn't work I can send it to your fb page. I was sure you would have a copy.

Love

Deb xx

http://www.amazon.com/Juvenile-Hunti.../dp/0199236127
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Old 09-07-10, 02:34 PM   #33
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Default Re: Book on JHD

Thankyou LadyC

I guess selfishly I don't want to be the member on here with 'the teenager with JHD'.I just want to be a caregiver who is affected by this illness.So if I ask a question about sleep issues or itching ect people will just reply back to me with what has helped them as they would an adult with HD.I asked a question on here about the drug Risperidone a few weeks ago.Hardly anyone replied.I put it on the Lighthouse and hey presto people said their hub/wife ect had been on it and I was just treated 'normal'.I feel I make people uncomfortable so I rarely I ask anything on here now and just post the welcome's to the newbies and offer comfort if needed.

Myrna.Please don't feel bad about not being here for me.I don't expect you to be,honestly!You have had your own grief and loss to deal with.Yes I may come to you and Lucy first sometimes because you guys have been there and done that unfortunately.I fully understand you need to get away from here sometimes.I hope I have your strength to help others when my daughter passes away.Your a very special lady.xxxx
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Old 09-07-10, 05:37 PM   #34
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Default Re: Book on JHD

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I asked a question on here about the drug Risperidone a few weeks ago.Hardly anyone replied.I put it on the Lighthouse and hey presto people said their hub/wife ect had been on it and I was just treated 'normal'.I feel I make people uncomfortable so I rarely I ask anything on here now and just post the welcome's to the newbies and offer comfort if needed.
That's simply because the Lighthouse is a research forum, drugs, clinical trials and research is what they focus on there. That's why more people will respond regarding drugs there than they will here.

Tc, Matt.
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Old 09-07-10, 06:02 PM   #35
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Default Re: Book on JHD

Paula, I'm sure you don't make anyone feel uncomfortable...they put up with me for a very long time so most are pretty used to hearing about jHd.

I really believe the only reason you don't recieve an answer is because the majority of people who use the board regularly just simply don't know the answer. My Rik never had any meds until the very end & I know she's not the only one.

Don't feel you have to post only to other people. JHd needs to be out in the open & all the problems that come with it. Please, post anything you need to. Its what the board is here for. You will receive the answers & if you really can't find them here, there is always the American sites. I used both to my own advantage.
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