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Old 15-11-17, 12:08 PM   #1
Shmophie
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.
I’m trying to remain positive but always felt I might have HD as have known my whole life it is in my family.
I’m not the sort of person to reach out for help but I have so many questions going through my head that I can’t 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 ‘red mist’ 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 it’s too soon. Since then I’ve now begun to wonder if my anger and forgetfulness are the first signs?

I’m 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 I’m trying to be better. Now I have HD I think it’s going to be inevitable.
- I really don’t want to be a burden on anyone later on in life, I really wouldn’t 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 ‘what if’ and complain of me following him around the house looking for a hug (which I do already 😂). I don’t want anyone to think of me like that.

I guess I’m 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 don’t really know what to expect. Any advice I got from a counsellor is very vague “you might bump into things” or “you might have trips & slips”. Don’t we all?

Thanks in advance,

Sophie
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