I just recently found out that my mother has Huntingtons disease and since my sister and I have found out, we cant stop thinking about it. We monitor every move we make, every twitch and how we walk. We have both decided not to get tested at this point but have children so eventually will be tested. I just want to live my life now and not worry about the what ifs but cant seem to get it out of my head. My sister is even worse then I. Does the worry of possibly having the disease ever get better?

im about 8 months out from the same news.

i can say it does get better, and that i think about it way less now than i did at first. i was seriously, deeply upset when i first found out.. all i can say is that you will adapt to the news, it will never be out of your thinking, but the mind does have a way of getting on with things..

Thank you, we just found out three weeks ago so I have to believe it will get better than this.

bsoule-

a longer reply:

when i first found out that my brother had HD, and that one of my parents was pHD, it was easily the most difficult time of my life. probably my husband's as well. i felt cheated of a future, certain that i would get horrible symptoms at any moment, and, worst of all, as though i was the only person in my world with this kind of burden.

im a train commuter, and on my morning solo 75 minute commute, i cried almost every day. (the conductor pretty much lets me ride for free these days LOL)..

i was in mourning for my brother, and for myself. it seemed as though i would never be able to shed the weight of the news, and that i would be destined to a life with no joy. i promised myself that if i tested positive i would craft a humane ending for myself. its hard to type that now.

all i can say is that at about the 7 or 8 month mark, all of the sudden i accepted that sickness and death is the basic human condition. although HD is a difficult illness, we will all face illness in our lives, and suffering is universal. for some reason, the acceptance of the fact of universal mortality was very very freeing for me. it was like a total sense of liberation.. we will all go through these feelings, but a genetic revelation forces the HD community to deal with these issues at a much younger age (generally).

we are not born entitled to joy- we can and must create it for ourselves...

im not sure what will do the trick for you. perhaps my acceptance was more to do with time than anything else. i also relied pretty heavily on a small group of friends (with mixed results) and a therapist who validated how personally threatening and scary this process really is...

what i am sure of- it will get better for you. if you want to email directly or private message let me know.

It is amazing reading what you have wrote because my sister and I have had the same exact feelings. Feel like our life is over now knowing that it really isnt. We also talked about ending things on our own if it got to a certain point but when would that point be? How would it affect our loved ones? It is funny because what you say about knowing that we all die, helps to accept and it does but it also makes that more of a reality. I knew I would die but now I feel like I'm looking into a crystal ball and know how. I cant think of anything much worse then dying of Huntingtons and the sad part is that I look for people that are worse off then me and it actually makes me feel better.

Your words are vey encouraging and I love the line about being entitled to joy.

I woke up for the first time this morning and it wasnt the very first thing I thought about, was seconds later but its still a start.

I have another question and you dont have to answer it but did you decide to get tested? We did not and the reason why is that although I am pretty sure I probably have it, I feel like the small piece of me that thinks I might not helps me keep going. Not sure how I would handle the news knowing for sure.

Thanks again for your response, it has been very helpful to both my sister and I.

i decided not to get tested right now for a few reasons:

1 - im scared. (duh). scared of the result, and scared of losing the peace i have gained. also scared of having my brother feel isolated.

2- my parent has no symptoms but a pHD result. one of my aunts made a ton of life decisions based on cancer where she was given little time to live. turns out she is alive and kicking 50+ years later, and somewhat regrets some of her choices.

3- that little sense of normalcy that you mention. the feeling that each day i can decide for myself whether i think im gene positive or not. the duplicity helps me use whichever result is more convenient.

this is tough, really really tough. but rest assured you will emerge on the other side as a smarter, more empathetic, and more whole person. my thoughts are with you guys.

Thank you Noreaster!

Hey bsoule. Welcome to the forum. How old are you and sis if you don't mind me asking? My two at risk kids are 18 & 20.


Thanks,
Pete

Hi, i am 38 and my sister is 40. We both have children also ranging from ages 3 to 9. My sister and i have chosen not to get tested but will when they get older, hoping we test negative and they will never have to worry about it. Thank you for the welcoming, reading everyones stories has already made me feel a little bit better.

Same here. When I first realized my Mom has HD, about 2 years ago, I could not stop thinking about it. First, gathering data to test the hypothesis, and then getting deeper & deeper, worrying about what it meant for me, and gathering tidbits that I hoped would help us either fight it, and/or cope with certain aspects. I wondered if the obcession was part of impending illness, but honestly I think it is common. Lots of people have other symptoms related to anxiety, like twitches, that they fear could be HD symptoms.

Not being able to get it out of my head is a big reason that I decided TO test and get it over with. I rolled the dice, on the 50% chance that I could stop worrying about it for myself; but figured that a positive result couldn't be THAT MUCH worse than obcessing about the 50/50 chance, could it? Well, I have not experienced anything worse than the fresh positive result, with the time leading up to those results being a close second worst thing I've experienced. But time does help.

I probably could have thought about it less by now, even if I had not tested. I do sometimes wonder if I'd be happier not knowing that I have the gene for HD. I AM generally happy, but there is always a big cloud over our lives. At the same time, there have been times when the knowledge has come in handy. And I try to focus on living life for NOW, since we NEVER know what tomorrow will bring, whether you know what's in your genes or not. I still have hope that supplements & further advances will help us beat this. Yet, if I were to have kids, I think I would play it safe for their sake and not count on that.

Sara, i am very sorry to hear that u tested positive for the gene and pray for a cure, from what i have read, it looks like they are making lots of progress. Your post is helpful, i have thought about getting tested because what if i am part of the 50% that doesnt have it but if i do, im not sure how i would cope. I know we all will die of something some day, i may have it and may or may not ever live to experience any of the symptoms but for right now, i have nothing to gain by finding out. Eventually, i will need to because i do have a daughter and only want her to think about ths if she has to and i do test positive. Thanks for sharing your story.