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Old 15-11-17, 12:08 PM   #1
New Member
Join Date: Nov 2017
Location: London
Posts: 2
Default New and looking for answers :-)

Hi everyone 👋
I found out yesterday that I have HD.
Iím trying to remain positive but always felt I might have HD as have known my whole life it is in my family.
Iím not the sort of person to reach out for help but I have so many questions going through my head that I canít seem to find the answers for. Apologies in advance for the lengthy-ness.

- When I do start to develop symptoms, what will be the earliest signs? I know we are all different but for you what came first and at what age?
- Before you began to develop signs, is temper and forgetfulness a typical trait of someone with HD as have always struggled with Ďred mistí my whole life.
- What are the options for me if I want to remain independent for a long time and wish for my husband and son (currently 1 year old) to not have to be burdened with caring for me?
- I said no to a neurologist appointment I was offered as I think itís too soon. Since then Iíve now begun to wonder if my anger and forgetfulness are the first signs?

Iím trying to just get on with my life and use my time wisely but for me the few things that are really getting me down are:

- the fact that a stranger messaged me that my dad (estranged) is currently deteriorating due to HD. Had someone told me sooner I could have had IVF and my 1 year old son not been at risk.
- I already talk to my husband about my anger issues and that Iím trying to be better. Now I have HD I think itís going to be inevitable.
- I really donít want to be a burden on anyone later on in life, I really wouldnít like my husband or son to have to care for me. I just want to leave an inheritance and to make them both happy.
- Since reading around these forums, now a new one for me would be that my husband would secretly think of leaving me or wonder Ďwhat ifí and complain of me following him around the house looking for a hug (which I do already 😂). I donít want anyone to think of me like that.

I guess Iím just looking for experiences from people who have been there. Although most of my dads side of the family had HD I have never seen anyone experiencing symptoms due to being estranged from them and donít really know what to expect. Any advice I got from a counsellor is very vague ďyou might bump into thingsĒ or ďyou might have trips & slipsĒ. Donít we all?

Thanks in advance,

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