There are so many resources that can be found on line about Huntington's Disease. Some are simply informational. Some provide resources and contact information for doctors, support groups and much more. Some are simply blogs like this one about people that are dealing with the exact same thing as my family. Here are my favorites.
The most important one is the Huntington's Disease Society of America website. This website is jam packed with information about the disease, where to find help in your area and even resources - including webinars - for the caregiver for an HD person. I am a frequent visitor to this site. In addition, I also like the Greater North Texas HDSA website. This one is for the local HDSA chapter in the North Texas area that has information about the happenings in my area. There are many other chapters and affiliates throughout the country. To find one in your area, choose chapters and affiliates from the About HDSA drop down on the home page of the Huntington's Disease Society of America website. It will ask you to enter your zip code and show you the closest chapter to you.
Another one for news and information about the disease is HD Buzz. The website's motto is Huntington's Disease Research News - in plain language, written by scientists, for the global HD Community. In other words, they take the important news out there about Huntington's Disease and put it in to words that you and I can understand. They don't use those big scientific words that we have no clue how to pronounce or what they mean. They even have a weekly newsletter that you can subscribe to for emails about the latest and greatest news. Or, you can get the information via a podcast if that is your preference. This is usually my go to when I see new news about a possible treatment or discovery since it is so much easier to understand.
Another good one is Huntington's Disease Lighthouse. This a website that is created by families with Huntington's Disease for families with Huntington's Disease. It is full of blogs, message, forums and so much more for families that are dealing with Huntington's Disease. It is created by others that are going through the same thing you are and is a good resource when you are looking for somebody to understand what you are going through. Who better than a person that is dealing with the exact same things you are.
We Have a Face is geared at raising the global awareness of Huntington's Disease. They do this using the most state of the art technologies to broaden everybody's awareness and knowledge of Huntington's Disease and even lesser know Juvenile HD. My favorite thing on their website is the motto: Never give up hope, You are not alone.
The last two on my favorites list are both blogs written by others with Huntington's Disease.
At Risk For Huntington's Disease is written under the pseudonym of Gene Veritas. It is full of information about the writer's life and also updates on some of the new and promising research that is taking place. He also details some of the many happenings in his life. This blog does tend to be lengthy and full of a lot of hard to understand information, but it still very informative.
The other blog, Huntington's Disease and Me is written by a lady named Sarah who identifies herself as being in the early stages of HD. She is actually the one that started the HD Pie in the Face movement last year. Her blogs are more about the day to day life of somebody who is living with HD. She talks about her symptoms and how they affect her day to day life. It is an inside glimpse of what it is like for a person who is showing symptoms and how it affects everything and everyone around her.
These are my favorites. I hope you find at least one of these or any of the many others out there as useful as I do. More than anything, it helps to know there there are resources to help you and that others out there are experiencing the same things that you are.
Hello! I stumbled across your blog a couple of days ago, and although I haven't read every entry yet, I just wanted to leave you a comment to let you know it's been therapeutic to read your journey with your husband who has HD.
ReplyDeleteMy husband decided he wanted to be tested a little over a year ago -- no symptoms, just wanted to know if he had it or not so we could plan our future accordingly. His father is still alive and almost 70, with mild cognitive issues and mild chorea, diagnosed about five years ago. He's one of the lucky ones with this disease, honestly. The doctors say that HD isn't going to be what kills him. I hope beyond hope that my husband is that lucky -- that we're that lucky. His dad has 42 CAG repeats, and he has 48 CAG repeats. He has a younger brother who is at-risk, still deciding about testing. We're both young, he's 29 and I'm 30, so we have a long road ahead of us.
Especially since we are expecting our first child.
We tried to be pragmatic about it. We looked into IVF, but the cost was too high for such a low chance of getting pregnant with each try ($15k-$20k for a 40% chance), and like you, it felt like playing God. So we tried to convince ourselves that we would just see what was meant to be in terms of natural pregnancy and do prenatal testing if we happened to get pregnant. Pregnancy came easy for us, but the decision of whether to test did not. In the end, we opted out because we couldn't bring ourselves to terminate if it was positive. I was okay with the decision until recently, 7 weeks away from my due date. The reality of what we may have inflicted on our own child is terrifying, and the uncertainty of if she'll be one of those precious few who has JHD too harsh. I haven't been handling it well, but we made our choice and there is no turning back.Nothing to do about it now, except pray.
I keep telling myself, "She may not have it at all!" and then "If she does, JHD is so rare!" and "There are so many horrible things in this world and she will be loved and we will give her the best life that we can!" and "We actually could find a viable treatment before it's even a concern!" and, more morbidly, "People die from things every single day. HD or JHD may not even be what gets her in the end!"
Sometimes those "pep" talks work. Sometimes I just cry about the unfairness of it all and how selfish we were to go through with this pregnancy. I spend time every day watching for the first sign of symptoms in a man who has always been forgetful and a little fidgety, trying to distinguish what might be manifestation from who he just is as a person. I am trying to accept that I'll be doing the same thing for my unborn daughter until she can decide if she wants to be test -- or until JHD becomes a possibility in her too young of a life. I'll always be watching and waiting for it to happen in these people I love and I'm having to accept this now.
Anyway, I am commenting to you because you and your husband decided to put it in God's hands about having a child, without testing or IVF as an option. And although in the end having children wasn't His plan for you, it's comforting to know and find someone who may have been where I am now. I'm too afraid to post in HD forums or go to support groups about it, because I don't want to be judged for deciding to have an at-risk child. It's a lonely battle to be the one who doesn't have HD but is potentially surrounded by it.
Just know, I'll be reading and that I'm on a similar road as you.
Kimberly, I am so happy that I am able to help somebody else dealing with Huntington's. When I first started this blog, I said if one person got something out of it, ten I have accomplished my goal.
DeleteI can relate to how you feel. It was a very tough decesion for us, too. It is very hard to know that you are potentially giving your child this mess. At times, I wondered if we were wrong for wanting to do it. In the end, I was always reminded that each child is a blessing and all we can do is enjoy each minute we have with them.
I hope that the family history of late on set of symptoms continues in your family. That is wonderful to hear that your father-in-law is in his 70's and not showing symptoms. There is a lady in our support group who is in her 80's and only has mild chorea. She never even knew it was in her family because both her parents and grandparents died in their 50's never showing any symptoms of the disease.
I pray HD is good to you and your family and that you have a beautiful, healthy baby girl.
Hi Kimberly! I was just thinking about you today and wondered how you were doing and how your baby was. i hope all is well for you and your family.
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