Hi,

I do not have HD but I have a close friend that does and lately I've been extremely interested in learning about the disease. My heart truly goes out to all of you who have the disease, or are close to someone with the disease. I wish you all the very best.

As I read the posts I've noticed MANY of you have mentioned that your symptoms or family member's symptoms didn't start until late 30s, 40s, or even later. My friend started her symptoms when she was about 28 years old. Now, at 31, her symptoms are pretty severe. She still lives at home, but she can barely walk, she has quite a bit of difficulty with swallowing (choking), and definitely some serious psychological issues (extreme mood swings, no patience whatsoever, etc.)

Does anyone have stories about people that have started their symptoms earlier in life? Not necessarily juvenile HD, but like I said, my friend started at 28 and a little less than 3 years later she is progressing FAST. Her CAG count is 49. Does that have anything to do with her starting earlier?

Thanks for any responses, stories, etc. Again, all the best to everyone out there with HD in their lives (in one way or another).

~L.

My son's father has a CAG of 47 or 48. He is 38 and I am beginning to notice some jerkiness in his legs and other movements. He has been having the mental symptoms for a few years I think. He got tested at age 32 but has never been diagnosed symptomatic. I am trying to get him to go through the tests but he is very (understandably) resistant. Good luck with your friend.

Lauryn- My daughter Allison started symptoms at age 17. She will be 30 this August. Her CAG is 60. She lived at a nursing home that specialized in HD from Aug. 2006 until April 2012. I took her out of the nursing home because her care became unacceptable. The folks who ran the HD program were fine but the nursing care was downright scary. In fact the nursing home went from being highly rated under previous ownership to one of the lowest rated in the state under the Kindred banner. Suffice it to stay I could not leave her there with a clear conscience. She now lives at home with me and is very happy and doing well. She is fully mentally alert and still communicates well. Allison walks with assistance, loves to eat, and loves video games. She goes swimming and shopping, goes to concerts and sporting events and does just about anything other folks do. She loves living life to the fullest. I attribute her success to the very agressive care we have sought for her. She is in a clinical trial at Mass. General. Dr Rosas who runs the trial is a godsend who is accessible at all hours. Allison started xenazine (tetrabenazine) right after it was approved by FDA and has been quite successful with it. She takes many supplements which I know help her. She graduated from college magna cum laude when she was fully symptomatic. She had the psychological issues early. They are long gone. This is why she can now live at home again. People with HD can live well. Their attitude has a great deal to do with it. Allison intends to be the first person cured when gene silencing is a reality. The support system around the patient is so important. They need advocates who are willing to seek out the best care for them. HD is a lot of trial and error. When something doesn't work, you look for another path. This goes for doctors as well as meds. I can't tell you how many so called experts I butted heads with as we battled HD. Old attitudes toward HD die hard. Yes, the higher the CAG the earlier the onset usually is and the faster the progression is too. Nothing is written in stone however. I never thought Allison would improve enough to move back home, yet she did and is thriving. I do not have blinders on, know that this is a nasty disease, but I will never give up!!! You can read more about Allison on the update page of this website. Stand by your friend. She needs you.
Howard

Howard,
I am so pleased to hear that Allison is doing so well and is at home. I'm sorry the nursing care deteriorated so drastically at her Nursing Home. You are her strongest advocate.
Paula

Thank you so much everybody for your input. Howard, what an inspirational story! I wish you all the best with your daughter, and admire her for having an amazing attitude. Best to everyone else as well. Thanks again for the responses.

Here is a pdf charting expected onset for the full range of CAG counts.

Howard, I'm so glad your daughter is thriving under your care, however I am extremely sad to hear this news about her NH. Isn't it Laurel Lakes and the program Jimmy started? If so this must be killing him, I really feel horrible that it's gone done the tubes so much. Tell your daughter Steve and I said HI, we met her several years back during a tour with Jimmy. Pat

Pat-
Yes it is Laurel Lake. Allison's leaving is not an indictment of their HD program at all. Sarah and her team are the most dedicated caregivers there could ever be. I consider Sarah a friend. She was so very helpful anytime I needed her. The problem was with the medical staff. Without getting into a lot of details, it did not meet the standards I expected at all. They would seldom follow the advice of Allison's MGH doctor, Dr. Rosas. I wish they would contract with an experienced HD doctor as they promised to so many times in the past. Her meds were often missed and she was not kept clean at all. I met with executive directors (5 of them in the years that Allison was there), Kindred VP's, and even corresponded with the CEO. The last VP I met with in March conceded that they had severe problems with the nursing staff. Unfortunately things did not get better. Allison has moved past the emotional issues that landed her there and was ready to come home. Her last six months there she was so unhappy. Fortunately I have the time to care for her and I can now work with Dr. Rosas directly. I have said so many times that Dr. Rosas is the kindest and most dedicated doctor I have ever met. Just this week she fixed a medication error that the nursing home doctor made a week before she left. Unfortunately the error resulted in seizures last week. She is better now. Allison had lost 40 pounds since January '12 and was not eating unless I was there. She is now eating again and gaining weight back. We go to church, out to eat, to baseball games etc. and she is again enjoying life. Again, the mission of the HD program at Laurel Lake is noble although I fear they have lost some of the resources they had under the previous ownership. We are both so much happier now!
Howard

Howard,
Nice to see you on again! I am glad you were able to bring Allison home. I have hopes that one day, I will also be in a position to bring Tim home. I just returned from visiting him. We had a food fest and watched our beloved Cardinals lose to Cleveland. I always leave there feeling like I should be able to figure this out, he seems content but like you, I have real issues with the lack of personal care that he receives. I do much of it when I come to see him. The NH doctor also refuses to work with our COE doctor, what is the issue? I think it's professional arrogance that prevents them from cooperating with Tim's neuro.
Keep us updated, I often wonder about those of us who I have come to know on this forum and it's nice to hear from you!
Do you have someone who helps you in the home with Allison?
Take care,

Carla

Howard, so sorry to hear about the seizures, but glad to know you are both happy with her back at home. Many more happy years for you both!

My first husband died from Huntington's at the age of 52. We did not know of his HD until after we divorced and I was remarried. Once I found out what HD was and looked back on our relationship, I know he definitely was having symptoms at age 30 (probably before that). We never knew his CAG count since he was clinically diagnosed the year before the HD gene was identified, making the blood test available.

My son has juvenile Huntington's. His symptoms began in his mid-teens. He will be 30 this summer and has been totally bedridden for 2 years now.

My oldest daughter is 27. She is showing obvious symptoms of HD and has been now for a couple of years. Her CAG count is in the 50's (I think 52?).

My youngest child from that marriage has tested positive for the HD gene. Her CAG count was the lowest of the three children (I believe it is 46). She is now 25 years old and has no symptoms as of yet.

Howard, my sister in law also removed her brother, my former husband, from Laurel Lakes. He is in another nursing home and much happier.