hey gang-

I just wanted to check in with some thoughts, about 7 months out from my brother's diagnosis, and the discovery of Huntington's in our family..

We have spent alot of time adjusting to this new reality, and its been a tough, tough year. But i think in general we talk so little of the small silver lining- in my family, we now value each other a whole lot more. and there is more patience for each of our shortcomings- those with and without the gene.

We were lucky enough to head out on a warm weather vacation last week (my brother, parents, and my husband), which we all looked forward to very much. In terms of travel, we were all kind of nervous, especially about nutrition, but in the end, we all did just fine. we kept some extra snacks around, and made sure my brother had some time to himself to complete his routine (which is very important to him). Clif bars and other granola bars played a big role; keeping some sugary stuff with a protein back really seemed to help when days were longer than intended.

We ALL snorkeled, fished, did some short hikes, and saw some pretty amazing Mayan ruins.

I learned so much from my brother in terms of how he copes with the disease. Exercise and speech therapy are big parts of his plan to keep as healthy as possible, and from what I see, it seems to be really helping. He has always been in great shape, but now his work is tailored more toward core balance, as well as overall fitness. The speech therapy, in particular, has helped SO MUCH. Please look into it if you are having speech problems. When my brother does his speech exercises, its night and day.

I keep thinking that if we hadn't had the diagnosis this year, we never would have made the time to reconnect with each other.

I know things will get harder. But I think its also worth talking about the things we can do now to make the most of our time. I just wanted to jot out a note dedicated to the early and pre stage people- we shouldnt be afraid to try things- make memories- live as much as we can.

noreaster-
so glad you and your family got to spend some quality time together to enjoy yourselfs and each other. My husband and I decided that we would never let HD take any more from us then it might some day take. We try to live each day to the fullest and remember that here and now are all any of us really have. Good luck in the future it sounds like your brother has love and support and is doing a great job of coping and being proactive with HD.

Sounds like a great time was had by all. Our family also took a beach vacation together...I cherish the memories, it was the best thing, being all together after we found out.
Silver linings are in all things, sometimes we have to work a little harder to find them but they help us to cope.
I agree with Debi...the here and now is all any of us can live, so live well.

Take care,

Carla

I am glad you all are doing well and enjoying your lives and being happy regardless of what happens.

It gives me hope that therapy can help with the huntingtons symptoms.

We are also trying to make the most of our time together. Unfortunately we are unable to go on any vacations with my husband because he is in a nursing home, but I do try to do some fun things with him. My brother bought us tickets to see Bryan Adams and it was sooo much fun. It brought back some really great memories as we used to listen to his music all the time when we were in high school. It's getting more difficult to find things that we can do because he is starting to forget a lot of things and having a harder time getting around, but still trying to involve him in as many things for as long as possible.