Jimmgjersey, I'm so glad that you told your 10-year-old daughter about her mother having Huntington's. It's no longer something that you and the older girls have to avoid discussing around her. Wishing you, your wife and the girls all the best. Thank you for your kindness in your response.by EveningSunset62 - Huntington's Disease Support Center
Jimmgjersey, I have just found your question as to how you can tell your 10-year-old daughter that her mother has Huntington's Disease. My son, now 32 and a pHD, started noticing changes in his Dad when he was in the third grade. He couldn't understand why his Dad was having trouble driving his car and other unusual movements of his arms and legs while watching t.v. Don wasn't as patby EveningSunset62 - Huntington's Disease Support Center
Merry Christmas, Happy Holidays, Feliz Navidad, Joyeux Noel, and Buon Natale to everyone here! Thank you, TylerFitz, and the best of Yuletide 2015 to you as wellby EveningSunset62 - Huntington's Disease Support Center
Liz, saw here that you're worried how people will perceive your husband on the trip. When Don would be leaving Phoenix to go back to California, I'd let the boarding agent at the gate know that his condition wasn't due to alcohol or drugs, but a serious neurological condition and that he wouldn't bother anyone. I also would ask that the flight attendants be notified and requested that someoby EveningSunset62 - Huntington's Disease Support Center
A few months ago I wrote that my son doesn't "holler" much, but things have changed. When he's watching television or playing video games, he makes a lot of involuntary shouts, laughs and other sounds of laughter or frustration. He might watch a frightening series on "Netflix" such as "Supernatural" and shriek with laughter as though it's the funniest program heby EveningSunset62 - Huntington's Disease Support Center
Hi, Mikee! My son has HD. He goes between bouts of constipation and diarrhea which sounds like IBS, but it's due to HD's effect on the nerves, which then affects the muscles of elimination. I just try and make sure he eats lots of fruits and vegetables which help with the digestion run in a regular fashion with fiber as well. If he gets the runs, I make rice pudding or serve rice with dinneby EveningSunset62 - Huntington's Disease Support Center
Liz, I sent you a private message prior to reading this post about Donnie being approved to go to the Grand Canyon--Congratulations! That is fantastic! If there's any chance you'll be coming through Phoenix, I would love for you and Donnie to come to our house for a visit. We'll discuss later, but I'm so glad for your success with the Dream Foundation and giving Donnie such a great gift!by EveningSunset62 - Huntington's Disease Support Center
Liz, here it is Wednesday night already! Just a quick line as we have company staying with us. Alex's dog seems to be hanging in there and in better spirits. However, she has lots of trouble getting up and down. She's on Amoxicillin, a medication which contains milk thistle, ear drops (which she hates!) and a laxative which has her going like Sherman through Atlanta! Not a good medicineby EveningSunset62 - Huntington's Disease Support Center
Liz, hi! I'm so glad to hear back from you! Isn't it great to be on vacation from work? That's wonderful that you were able to go to the beach! I've been reading about how many HD patients are on different meds and some seem to create the problem they're supposed to eradicate. Alex isn't on any. He hasn't seen the doctor in two years and I can't force him. Finally yesterday he agreedby EveningSunset62 - Huntington's Disease Support Center
Hi, Liz! Haven't heard from you in awhile. How are things? Please respond when you can. Hoping you're doing o.k. Sharon p.s. Sent you a private message as well.by EveningSunset62 - Huntington's Disease Support Center
Liz, Sorry to have been incommunicado the last two or three weeks. I feel so terrible knowing you're having a hard time as caregiver to Donnie and feeling alone. One thing that may be causing Donnie not to pick up after the puppy is the classic apathy and lack of initiation experienced by Huntington's Disease patients. My son was engaged to a girl who called him lazy for not working oby EveningSunset62 - Huntington's Disease Support Center
Congratulations, to you Liz, and Donnie, for getting approved for Disability! I'll write you more later, but didn't want to forget to send you a note for that! Have a great evening, ok? Sby EveningSunset62 - Huntington's Disease Support Center
Liz, I can't imagine just how frightened you must have been on Saturday when you were swimming, Donnie went under the water, and pulled you in as well! You were so brave and found the presence of mind to get behind Donnie and push him toward the shore... How wonderful, though, that you were able to go camping up at the lake. Did the boys go too? My late former husband started showing siby EveningSunset62 - Huntington's Disease Support Center
Liz, hi again! I was just about to turn in but decided to check this site and found your note. Your Dalynn, Dalton and Christian are very busy young men! Your story about sitting around the bonfire and making s'mores really got to me. It must have been so hard for you to realize that Donnie's memory of one of the most important parts of your life together--your meeting and courtship--hasby EveningSunset62 - Huntington's Disease Support Center
Thank you, Will, for your kind help! Steve is the perfect person to help with changing my Username. Hoping all is well with you and you're having a great week! Sincerely, Sharonby EveningSunset62 - Huntington's Disease Support Center
Hi, Liz! I saw your message over in another section (changing Username) and decided to send you one back here in your post. How are things going with you? How is your husband doing? Are your sons busy with summer activities? Any word regarding Donnie's application for Disability? Hope you hear soon! I had to laugh when you wrote about my son loving my cooking but the poor guy haby EveningSunset62 - Huntington's Disease Support Center
Barb, I'm so glad to see you've been here and let us know you're o.k.. Have you recovered from your concussion? My son got one when he was 8 so I know it takes awhile. You're a very strong lady, Barb, but we're all here to help you when you need it, ok? Thank you for checking in and also for your kind welcome!by EveningSunset62 - Huntington's Disease Support Center
My son is 31 with a CAG of 52. His father passed away with HD at the age of 48. Alex was going on 16 at the time and all he wanted was to know whether he'd inherited the gene or not. He was tested at 17 after first having been refused due to his age, but the geneticist put together a panel of doctors (pediatric neurologist, psychologist, pediatrician) and my son's therapist who had helped himby EveningSunset62 - Huntington's Disease Support Center
Have any of you ever changed your Username? I realized that my son might be upset if he reads anything about him on here. Don't know if he comes to this site but don't want to risk causing him any discomfort over information shared about his situation. Thank you.by EveningSunset62 - Huntington's Disease Support Center
Liz, I'm so glad you and Donnie had a nice weekend with a bowling night! As far as his back hurting, the increased involuntary movements could be a strain on it. My son sometimes looks as though he's rubbing his leg, but I think he's trying to stop it moving. Yes, the Facebook HD support group is very good too. So many nice people but also some very sad situations... Thank you for your sweeby EveningSunset62 - Huntington's Disease Support Center
Hi, Barb! Just wanted to send you a quick "Hi!" and let you know we're thinking of you and hoping you're o.k. Looking forward to hearing from you, ok? We're all thinking of you.... Sharonby EveningSunset62 - Huntington's Disease Support Center
Liz, how are you doing today? Are you and the family doing anything fun this weekend? Is Donnie doing okay? Just thought I'd drop a quick line to you. My son and I watched a couple of episodes of the new "Cosmos" program together and now he's eating lunch. We'll probably look in on the world of "Scrubs" via the boxed set later. Sharon P.S. Have to literally run tby EveningSunset62 - Huntington's Disease Support Center
I wouldn't say that my son "hollers" much. However, sometimes in the night I'm awakened by him laughing very loudly at his cartoons (Japanese anime) or video games on the t.v. or computer. I don't notice it too much in the daytime when home from work. He was a drummer so sometimes I wonder if it's his hearing instead of his HD. However, it's almost as though he's conversing with theby EveningSunset62 - Huntington's Disease Support Center
Liz, hi! It's so hard to tell someone that they need to bathe and put on fresh clothes, isn't it? My son will wear the same clothes over and over. Every day before leaving for work, or upon returning, I'll remind him to take a shower and put on fresh clothes, but he doesn't want to, or says he forgot. When his father was living and would visit us, I could give him an incentive such as puttiby EveningSunset62 - Huntington's Disease Support Center
Liz, Hi! Thank you for your kind welcome to this board! I can remember going to the doctor with my son's father and them asking him similar questions. It was so painful to see someone once so bright having his memory robbed by HD and unable to answer. Can't say, Liz, that I know just how you feel, not being you, but can most certainly empathize. Wish it were possible to say definby EveningSunset62 - Huntington's Disease Support Center
The way I thought of it, when my son first started raising his arms, was that he looked as though he was raising his hand for a teacher to call on him in school. Now he's raising both arms involuntarily. I don't say anything to him; it's just something that he does and can't help. His father did the same with HD so it doesn't surprise me. Don't worry about it, ok? It is what it is...by EveningSunset62 - Huntington's Disease Support Center
The way I thought of it, when my son first started raising his arms, was that he looked as though he was raising his hand for a teacher to call on him in school. Now he's raising both arms involuntarily. I don't say anything to him; it's just something that he does and can't help. His father did the same with HD so it doesn't surprise me. Don't worry about it, ok? It is what it is...by EveningSunset62 - Huntington's Disease Support Center
It's not really that my son refuses, but he will stay up all night and watch t.v. or play video games until he can't keep his eyes open any longer. He then takes his creatine powder, blueberry extract and another homeopathic mixture that he feels is helping him, and turns in. Sometimes he'll sleep for almost 12 hours, sometimes for only 2 or 3. At least once a week, he'll try to get his day baby EveningSunset62 - Huntington's Disease Support Center
Barb, I'm new here but have read your previous posts. Hope you're feeling better. Would you please write back and let us know that you're o.k.? Don't have HD myself, but am caregiver to my son. Take care....by EveningSunset62 - Huntington's Disease Support Center
Liz, I'm new to the message board but have read your story. Hoping your husband was approved for Disability and that you're going through calmer waters. Thinking of you and your family.... Sharonby EveningSunset62 - Huntington's Disease Support Center