klivin I remember another post from you. Personally I am more irritable but in some ways more docil than in years past. My kids and wife will agree. Those around me don't see some of it, it's in my brain. He is doing well to be able to continue as he has. You have done well as a support mechanism. Pass along to him that I admire you both.I hope things work out. Mikeby mikee - Huntington's Disease Support Center
Insurance is a tricky thing. Most Doc's I've encountered are scared to death of them. As far as documeation, they don't seemed to be concerend with the patient's best interest. Mikeby mikee - Huntington's Disease Support Center
I am the first in my family. My CAG is 36. Came about from a head injury. I've not heard of geration skipping. I guess it would be good?The Neuro did think mine came from my father who died at 57 when I was 6. We will never know. Apparently I lived to see HD with a 36.. I have had other similar post. It's good to know it may skip as I have two sons at risk. I've learned a lot about HD here. Tby mikee - Huntington's Disease Support Center
Don't know what to tell you......thoughts and prayers going up. Mikeby mikee - Huntington's Disease Support Center
I can only speak from my experience pre testing. My policy was through an employer some 10 years prior to testing. It states there is a 90 day pre existing time period. Mikeby mikee - Huntington's Disease Support Center
I'm not sure about the question. Do you mean the at risk group, expandable allele. Mikeby mikee - Huntington's Disease Support Center
I wish you both the best. Whatever the outcome, embrace it and conquer it to your ability, together. Mikeby mikee - Huntington's Disease Support Center
It certainly is great.by mikee - Huntington's Disease Support Center
I don't remember if you saw my other post but I located a local family. I have spoken to them and we plan to meet. We were able to share some helpful informaion. I don't feel so alone knowing there is someone nearby. Mikeby mikee - Huntington's Disease Support Center
Thanks Purplegal. If you want to discuss the vertigo, send me a PM. I've had lots of experience. Laying down is the only relief from the symptoms for me. My neuro told me HD would explain the vertigo as well. Nausea comes on for a while and goes for a little while. Can't tell you have many times I have had to stop for it. I will talk to the Dr. when I go back. Mikeby mikee - Huntington's Disease Support Center
Just wanted to pass this along. I discovered a center of excellence in Birmingham. After a message from them they are starting an HD support group. If I remember correctly it begins May 5 with a guest speaker and will meet the first Saturday of the month. I can post a link or you can go to the HDSA website. Mikeby mikee - Huntington's Disease Support Center
It is exciting isn't it.by mikee - Huntington's Disease Support Center
My SIL helped find an HD family, by accident. I decided to call them after I found out enough information and it was such a breath of fresh air. They have a family history, hidden as I have seen from post but so nice to make contact. It was such a great feeling talking to people who knew exactly what life is really like. We shared information and of course I recommended this forum. We could talkby mikee - Huntington's Disease Support Center
That's touching and sad. I too worked on an Ambulance in the mid 70's, long before paramedics. That was a generous gift he gave. Mikeby mikee - Huntington's Disease Support Center
Welcome Nilesh. You have found a wonderful community. Sorry for the the reason you are here but life deals us a blow sometime. Share with us. Again, Welcome, Mikeby mikee - Huntington's Disease Support Center
Thank you for the post. Sad we have to fight for recogniton of disability, especially JHD.by mikee - Huntington's Disease Support Center
Bluedaisy and Collen, thank you for the respon My Neuro has been emphatic about the need to be active. Yes, it could be a problem being active. We are in fear of the disability company daily. ERISA gives them total control. I can risk doing what the Dr. recommends but the locals (Dr's) don't want problems due to fear of being sued. I want so desperately to have something that resembles a normaby mikee - Huntington's Disease Support Center
Wow. I thought this post died. Thanks for the response. Marsha, I'm like Steve, outgoing, never have met a stranger, can talk to anyone. I felt something inside that almost compelled me to follow the couple inside. I still wish I had. I can take no for an answer and would not look back. I want to help. Be it personal, for all, I don't know what it is. I know at this point I am able to participby mikee - Huntington's Disease Support Center
RJ, I am early stage. Went through threrapy for vestibular reasons, found out I had neurological issues and now I'm here. Therapy at the time didn't do much. It was noticed I was not as bad as when I went in but it was still bad. My Neuro has emphasized the need to be active. From many post here and Marsha, those who do best are the ones who exercise to fitness. Your Dad probably can't aby mikee - Huntington's Disease Support Center
I think it was my (HD) bad.by mikee - Huntington's Disease Support Center
No you can't. Easy for me to say. I talk the talk but don't actually walk the walk.......I'm beginnig to look at supplements and hope it will help. I've gotten good information here. I've been taking a teaspoon of Coconut Oil daily and it may be imagination but thinking doesn't seem quite as taxing.. Mikeby mikee - Huntington's Disease Support Center
I've been on disability (both SSDI and private) for several months. I am so afraid to go outside and even bend over as much as it causes problems. I've always been the type that if someone else can do it so can I. My activity has come to a near halt for two years now. The restcricton I have is self imposed and contributed by the horror stories I see about private disability. I've been told to waby mikee - Huntington's Disease Support Center
Coleen, I'm a bit confused. Your sister is 100? Mikeby mikee - Huntington's Disease Support Center
Way to go Katinka. You guys are so positive. Thank God for you. Mikeby mikee - Huntington's Disease Support Center
Kimme, Have you had a chance to check out the website? I just found the link here (duh) under clinical trials. Isn't that convenient.......Check it out. Mikeby mikee - Huntington's Disease Support Center
Thank you both for the information. It is reassuring to know others experience. I have discovered in the last few months how unpredictable this really is. It is good to know. I guess I don't like the unknown and like to plan. Not knowing doesn't help with that. Oh,well...... I'm both sorry for your families histories and glad there have been good outcomes (in perspective) and I hope that contiby mikee - Huntington's Disease Support Center
Thanks for the tip Carla. Mikeby mikee - Huntington's Disease Support Center
Thanks for the feedback. I'm still a talker and never met a stranger although I respect the other person. With so few of us it would be nice to meet someone, talk to someone with HD, although I'm not sure I'm ready. Mikeby mikee - Huntington's Disease Support Center
Being new to this I'm considering a lot. Currently I am travelling about 950(+) miles one way. I am well pleased with the treatment and would like to follow up with my Neuro there. What do you do in between annual visits. Being there aren't many specialist for HD how do you locate one. I'm 3 hours or less from Nashville,Tn Birmingham, Al Memphis Tn. Any suggestions. Thanks, Mikeby mikee - Huntington's Disease Support Center
Kimmie I guess you could say I was at the right place at the right time. I was asked during my followup. I have the particulars somewhere. I found just by accident. Take a look. Already signed up for one. Mikeby mikee - Huntington's Disease Support Center