Saving My Life

Anything I post on here about PCOS or any other condition, is general information or information I've accumulated in my experience having PCOS or other conditions. I'm not a doctor, so nothing I say should EVER take place of a real diagnosis from your doctor. My eating plan described on this blog is one I've made for myself and I'm constantly changing it according to my body's needs.

Sunday, May 16, 2010

Huntington's Disease

I know a few of you have been wondering what Huntington's Disease is and why I'd be freaking out so badly about it. Well, it is a slow disease and it will kill my husband by the time he's in his early 50's if he has it. He's turning 38 next month. Usually the disease hits 6-10 years before death in his family --they die usually around the age of 53. So, you do the math at how much longer I'll have him before he starts getting really sick. These are the symptoms of the disease:

Behavior changes may occur before movement problems, and can include:

•Antisocial behaviors




•Restlessness or fidgeting



Abnormal and unusual movements include:

•Head turning to shift eye position

•Facial movements, including grimaces

•Slow, uncontrolled movements

•Quick, sudden, sometimes wild jerking movements of the arms, legs, face, and other body parts

•Unsteady gait

Dementia that slowly gets worse, including:

•Loss of memory

•Loss of judgment

•Speech changes

•Personality changes

•Disorientation or confusion

Additional symptoms that may be associated with this disease:

•Anxiety, stress, and tension

•Difficulty swallowing

•Speech impairment
I found this video. Please watch it if you have a moment b/c it explains the true reality of Huntington's so well.

So, basically it's overall deterioration at a very slow pace. My husband's mother died of a stroke due to Huntington's and my brother-in-law died from choking on food due to Huntington''s very common for them to choke to death or commit suicide. So, now ya know why I've been so down in the dumps. I'm feeling a lot better though b/c I did something. I talked to my sister in law. I was afraid to, but I made her promise she wouldn't tell David I came to her...b/c I know he'd get upset. She told me she's glad I came to her and if I ever needed to talk about it, that she was only a phone call away. She's also on the mailing list to the Huntington's Society so she's going to give me a lot of reading material. She also told me I was right in making my husband eat better and told me to start making him take some Omega 3's. I had read that all of this can keep Huntington's from showing earlier but David told me it's quack science. My sister in law told me it's not and to start making him do these things. So, it was nice to be validated and nice that I could talk to her without feeling so sad. She's been through 4 Huntington's deaths in her family so she knows the reality of things, but has learned how to deal with it in a healthy way. She was only 11 when her mother died and she is such a trooper. I'm glad I spoke with helped so much. If David has it, we still do have a long road ahead of us, but at least I know I won't be alone.


  1. That is such a difficult disease to deal with. It's one that's more devastating than MS or Parkinson's or Alzheimer's. They do have HD centers that do presymptomatic testing genetically. Has he ever talked about wanting to find out if he's going to get it or not? I know it's hard to know ahead of time, but sometimes with that knowledge, you can prepare lifestyle and he can discuss where he wants to be and how he wants to be managed because families often find it hard to handle this, especially with children nearby. I will definitely be focusing some healing and protective energy your husband's way. You are quite the strong and smart woman.

  2. Hey Autumn, yeah it's a very bad disease. My husband could do the testing but for him he just doesn't want to know for sure. It also costs a lot of money and then they do a psych evaluation to determine if you're even fit to find out the results. Then if you have it and insurance companies find out, it can be hard to get coverage. So...we just haven't. I'm pretty sure he does have it and he's pretty sure too. Within in the next several years we'll know for sure. Thanks for telling me I'm strong...I don't know where you see it, but I'll take it. lol

  3. Hi Kim,
    I am so glad you talked to someone that understands. It is key to not feeling alone. I really really hope your husband doesn't have it. Isn't there a test they can do to determine if he has it? I would think it would be better than waiting and not knowing. I don't know.
    I watched the video. I had no idea it killed children.
    Thank you for the information.

  4. Kim;
    So long as you two plan as if he has it, you will be able to prepare the family, prepare your home and finances and your health care and get things in order. When the emotional aspects of the disease take over, he won't be able to tell you what he wants done with himself, so you need to set boundaries now like "if you get suicidal or homicidal, do you want to be in a care home?" Find out his stand on health decisions. He will feel more in control if he knows that when he's losing control, someone will be able to represent him that understood what he wanted. As matter of fact as it is, it's also a time for him to think about doing some videos and conversations for the children where they can remember him the way he was when he was healthy. I honestly hope that he doesn't have it and this will never be an issue, but you two can both feel better about it knowing that you didn't "avoid" it while he was still healthy enough to deal with the planning. I do think you're strong. I see that in all the battles that you take on. You have such a big and kind heart and yet are so take-charge and practical, in your children's education and your own health issues, so you really know that life is a series of things that happen, but it's what you do with those things that makes you wise and sometimes brings you to your greatest purpose and brilliance. You are a shining star and he is extremely blessed to have you piloting the ship. I'm here any time you need it.

  5. Knowledge is power...and comfort...keep doing what you're doing.

  6. Autumn, I almost cried reading your comment. You are such a sweet lady and I'm not a hugger but I'd so give you a hug. :) lol. Thank you so much for your words and encouragement. Yes, you are right...we have to plan like it's going to happen regardless. We do have some plans set down...some...enough? I don't know. He has life insurance that would take care of the house and keep me afloat for a little while, and I know that he doesn't want any extreme measures taken to keep him alive. He also wants me to put him in a home b/c it would be nearly impossible to take care of him...which really sucks b/c I want to take care of him and want him to be here at home. My sister in law says it would be hard too.

    Kyle, thanks for the encouragement. :)