Hi Melissa -I'll be a new friend. I am a 46 year old mom at risk in michigan.by juliew - Huntington's Disease Support Center
My husband (no HD, I am at risk) twitches when falling asleep and in his sleep. My mom, mid stage hd is still (no movements) when sleeping. I have had muscle twitch periods throughout my life that come and go - have not had any in about a year. I think it's normal.by juliew - Huntington's Disease Support Center
I openly discuss it with my kids, 13 and 15 years old, but do not dwell on it. They see me living as positively as I can. I believe that keeps them from worrying too much. They seem to be assured that there will be treatments/cure by the time they grow up (I hope so too!!!) juliew - at riskby juliew - Huntington's Disease Support Center
My Mom pHD always seems to be falling asleep anytime she sits for a while (church etc.). Are you sleepy tired or body tired?by juliew - Huntington's Disease Support Center
Hi Brian - welcome!by juliew - Huntington's Disease Support Center
Thanks for sharing - some positive news is a great way to start the day.by juliew - Huntington's Disease Support Center
HI Lisa - My 2 sisters and I are all at risk after a positive test on my Mom 3 years ago. The first few weeks were definitely the hardest. Glad you came by.by juliew - Huntington's Disease Support Center
Hooray! I am so happy for all of you!!!!!!by juliew - Huntington's Disease Support Center
Denise - sorry to hear your results. My Mom (67 years old) is in mid stage with 42 CAGs. I am still "at risk". If you have an 8 year old you must be pretty young, my Mom was not symptomatic at all until 10 years ago and was driving until 3 years ago (although probably a year too long.) We just got back from Rome which my Mom enjoyed very much.by juliew - Huntington's Disease Support Center
Hello friends- I am back from Rome and happy to report that all went well. It was all we hoped it would be. The Vatican was amazing, especially St. Peter's Basillica. We went to the Papal audience and sat in the first row, first seats. We were able to get very close to the Pope after the service because they had all visitors in wheelchairs line up for a special greeting. Mom was very hapby juliew - Huntington's Disease Support Center
Well it is finally here! We leave for Rome on Saturday - I can't believe it. It will be me, my mom(pHD) and my mom's sister (slightly symptomatic pHD). I hope it all turns out well. I am glad we booked for Spring instead of Fall, my Mom is really getting bad - walking is bad, talking is even worse. I will let you all know how it goes.by juliew - Huntington's Disease Support Center
Interesting thoughts. We had to get guardianship of my Mom last year (in MIchigan). The court would not allow letters from her Neurologists as they are officially "hers". She finally gave up the fight against guardianship after 8K in lawyer fees.by juliew - Huntington's Disease Support Center
Hi- It sounds like our parents are at the same point in the disease. My mom is 67 years old and still living alone in her condo. My 2 sisters and I had to take my Mom to court to get legal guardianship and conservatorship over her. Any elder care attorney will take on a case such as this. Total legal cost was about $10,000 and you have the right after given conservatorship to pay the fees outby juliew - Huntington's Disease Support Center
Debbie - my thoughts and prayers are with you.by juliew - Huntington's Disease Support Center
We hired a woman a year ago to spend about 40 hours a week with my Mom. Yesterday we found out this woman stole a check out of my Mom's checkbook and wrote herself and cashed a $3000 check forging my Mom's signature!! She was the daughter of one of my sister's patients (Sister is a doctor) and had been doing a good job. Anyone using in home care, PLEASE make sure you go through an agency and hby juliew - Huntington's Disease Support Center
Hi - My Mom used to wear contacts but as HD progresses is now wearing glasses. She keeps bending, popping the lenses out etc. Has anyone had this problem and found a solution?by juliew - Huntington's Disease Support Center
I am 46 at risk. I have 2 girls, 13 and 15. I will test when they consider having children. I am living happily now and don't know what my reaction would be if I test positive. I do not want to go into a severe depression or something - it is such an unknown. If there was something that could delay onset or a cure - of course I would test.by juliew - Huntington's Disease Support Center
I am 46 at risk. I have 2 girls, 13 and 15. I will test when they consider having children. I am living happily now and don't know what my reaction would be if I test positive. I do not want to go into a severe depression or something - it is such an unknown. If there was something that could delay onset or a cure - of course I would test.by juliew - Huntington's Disease Support Center
I am 46 at risk. I have 2 girls, 13 and 15. I will test when they consider having children. I am living happily now and don't know what my reaction would be if I test positive. I do not want to go into a severe depression or something - it is such an unknown. If there was something that could delay onset or a cure - of course I would test.by juliew - Huntington's Disease Support Center
My Mom is on both. I think the memantine has really helped with mood stabilization.by juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
by juliew - Huntington's Disease Support Center
She has not done an overnight trip for a few years. Believe me, I know it will be difficult. Her sister (pHD also) but only slightly symptomatic would also be going. Perhaps my younger sister also. skmf12 - I understand your points about the difficulty of travel... this trip is MOM's wish. I would hate to think anyone would have a bad word for me as I feel I am honoring her last wish. Theby juliew - Huntington's Disease Support Center
Hello friends, I wanted to ask your opinion of traveling to Rome with my 67 year old PHD Mother (we are in Michigan). She is still walking (poorly) and has agreed to take a wheelchair with us. My sister is thinking it is maybe not such a good idea ("What if something happens on the plane, what if something happens over there?" I think it is really my duty to take my mother as sort ofby juliew - Huntington's Disease Support Center
Try Met Life. Our Michigan chapter had a presentation by an Agent named Kurt Davis who is from an HD family. I will try and hunt down his contact info.by juliew - Huntington's Disease Support Center
Here is the link.by juliew - Huntington's Disease Support Center
Saw this on PubMed, any thoughts?by juliew - Huntington's Disease Support Center