I agree with Marsha!! I'm hoping that his doctor will have neurology consult...hopefully someone who is familiar with HD or like mentioned in previous post, maybe they can call an HD center of excellence to consult. I know my dad's neurologist stated that she had not seen many patients with HD. I wish you the very best!by rj - Huntington's Disease Support Center
So sorry to hear.by rj - Huntington's Disease Support Center
This is interesting!! My dad was an amazing drawer/painter too! I definitely didn't inherit that.by rj - Huntington's Disease Support Center
I am an at-risk child...almost 39 years old, while I can't answer specifically to your question because I do not know if I'm positive or not, I too have pondered this question. Yes, even at-risk I'm thankful for life!!!! I know this world isn't my home. I'm blessed with the life I have..my wonderful husband and children. As others have mentioned, it's a low CAG. Please have your precious baby.by rj - Huntington's Disease Support Center
Patty, I'm so glad to hear that your husband is doing well. My dad kept telling me "no" everytime I asked. He was bed bound and I respected his wishes. He died about 3 weeks ago.by rj - Huntington's Disease Support Center
Thank you Vicky for replying...we chose not to put in a tube...my dad passed away about 3 weeks ago.by rj - Huntington's Disease Support Center
Thank you all!! It's been up and down emotions...I guess that's normal...I know it will get better. This disease has stolen a lot from me...I'm ready for that to stop.by rj - Huntington's Disease Support Center
My dad passed away peacefully this morning...my heart knows that he is healed and rejoicing with The Lord right now...he fought HD hard....please let's all unite and pray for a cure.by rj - Huntington's Disease Support Center
Jackie, I'm so sorry what your are going through...My dad has HD and I'm 38 and am "at-risk". You mentioned in your post about when is the right time for your kids to be tested...speaking as an at risk person, that is completely up to them, you sound like a loving, supportive mom, and honestly that's all you can do. I don't really have any symptoms, although if I "symptom hunt&by rj - Huntington's Disease Support Center
Congratulations!!! Babies are a true blessing!by rj - Huntington's Disease Support Center
Congratulations!!! Babies are a true blessing!by rj - Huntington's Disease Support Center
Thank you all for your thoughts and prayers!! I just want him to be comfortable as he leaves this world to enter heaven. Praying for a cure for this horrible disease!by rj - Huntington's Disease Support Center
Hi all!! It's been awhile since I've posted...had to make some tough decisions and had to place my dad on hospice today .by rj - Huntington's Disease Support Center
Have you had your blood sugar tested?by rj - Huntington's Disease Support Center
Thank you Marsha for your reply! I would give you a hug if able...I appreciate your thoughts...he has lost this weight since placed in home (not quite a year), he's pretty much wc bound now and his muscles are wasting....this is hard and terrible. I just want to make the best decision and make sure he has a good quality of life with the time he has left. Thanks again for your insight.by rj - Huntington's Disease Support Center
My heart is sad for my dad today. I am usually an up beat kinda girl, but hard decisions are at my feet. The nursing home called and my dad has lost 8 pounds in 3 months. He now weighs 110!! He's lost 26 pounds in less than a year. He still feeds himself and does pretty good with it, drinks ensures (although I'm not 100% sure they see that he drinks it all). I know the should we get a feeding tuby rj - Huntington's Disease Support Center
Colleen, I have tried to pm you, but it says it's rejecting??? Can you try to pm me??by rj - Huntington's Disease Support Center
Thank you so much Colleen for your willingness to share! I will pm you soon...we have been crazy busy!! I'm taking my dad who had HD to dr this week, so I could use prayers for strength....by rj - Huntington's Disease Support Center
My dad also is on xenazine. He had moderate to almost severe chorea. It has helped with movements greatly, but now after about a year and a half on it, his HD has progressed a lot...I really don't think it is the xenazine because he's on the lowest dose, I think it's just part of disease progression, he is more stiff-like, incontinent, difficulty swallowing, falls often, becoming wc bound. I'm noby rj - Huntington's Disease Support Center
Colleen, thank you do much for your response!! Do you mind if I PM you? I have been researching TS and I'm pretty certain it is...even told Dr my concerns..at this point I don't think he needs any meds, but just have questionsby rj - Huntington's Disease Support Center
Thanks Marsha and Howard, he's only 9 but has had tics for 6 years, since the age of 3...pretty sure if he had JHD he would continue to decline in that time frame....he has a tic then they diminish for awhile, but do not go away, then may have a new/different one and they then seem frequent then diminish again...I've been keeping a journal. Doesn't affect school, has friends, says no one makes fuby rj - Huntington's Disease Support Center
And, I would like to add, that it is just crazy to me how we could possibly have 2 rare movement disorders in one family! I also want to mention that my cousin who is not at risk for HD also had these same kinds of tics my son displays, but was never diagnosed, he still has some, but much improved from when he was younger. My husband and I also had a few childhood tics as kids but outgrew them.by rj - Huntington's Disease Support Center
I'm a at-risk late 30's female with no symptoms so far. I have a question regarding JHD. My son is displaying tics, much like Tourette's and has since he was 3 years old and is now 9. He pretty much has all the symptoms, both motor and vocal and they wax and wane, just like text book tourette's. He doesn't have any of the "text" book symtoms of JHD. He's smart, straight A's, well-bby rj - Huntington's Disease Support Center
Usually you will run fever with pneumonia, and if it's been going on for a year, maybe a swallowing study?by rj - Huntington's Disease Support Center
I still read when I canby rj - Huntington's Disease Support Center
I think shar has a great answer for you, maybe medications can help at this point in your marriage. I wish you the best.by rj - Huntington's Disease Support Center
I just want to say that I'm so sorry for all that your going through! I know how hard it is to find proper placement for a Medicaid patient..the center of excellence would be great, but I know with my dad that we could only find one neurologist in the area that even took Medicaid patients...so I'm not sure COE accepts Medicaid only. Like someone mentioned, maybe a church affiliated NH....and alsoby rj - Huntington's Disease Support Center
My dad is in NH, and is starting to choke pretty badly. He is still on a regular diet. For those who have dealt with the choking effects, what is the best kind of diet? Blended, soft? Thank you.by rj - Huntington's Disease Support Center
Thank you all for your support and advise!by rj - Huntington's Disease Support Center
Hey all, I posted this in a previous post, but feel it kinda got all jumbled in with my medicaid concerns. So, I'm going to ask it again. Has Physical/speech therapy been beneficial to your loved one? My dad is prob in mid-stage (not really sure), he still ambulated, but of course has balance issues and moderate chorea. He has been in NH for about 5 weeks and hasn't received therapy yet, bby rj - Huntington's Disease Support Center