Barb, I know they probably won't work for everyone i'm just happy they work for you. It gives me hope that I can find things that help me. I had a similar reaction to an ssri that I tried. Thanks, Lauraby lauraandpete - Huntington's Disease Support Center
No we have a call in to the dr but they haven't had a chance to get back to us. I think this will require time and patience which is hard when you are feeling like crap.by lauraandpete - Huntington's Disease Support Center
Barb, Thanks again for inspiring me to get help. No sleep again last night I just can't even beleive this is happening to me sometimes. I feel like I'm stuck in a bad dream thats not really happening to me.by lauraandpete - Huntington's Disease Support Center
This is wonderful Barb. I was wondering what you take that you are doing so well on? I'm sure youve posted it before but I don't remember. Thanks, Lauraby lauraandpete - Huntington's Disease Support Center
I was interested in this but the exclusions were just to overwhelming to me. Lauraby lauraandpete - Huntington's Disease Support Center
Wow! That's awesome. It's the kind of thing that you would only see on medical miracle TV shows. To finally be able to communicate to cg's. What a fantastic aid. I'm very happy for you both. Peteby lauraandpete - Huntington's Disease Support Center
I just wanted to give everyone an update. last night I slept from 5-1 I guess its better than no sleep at all. Part of it is because I was yelling at my teanage son and pete at 4 in the morning. Barb I love the paper plate idea since cleanup is the worst especially at the holidays. luz, I think your right about the hormones but its such a hard thing to figure out and find the right dr forby lauraandpete - Huntington's Disease Support Center
thats a great idea we both need a happy pill!!by lauraandpete - Huntington's Disease Support Center
I am so happy I am talking to you. I've been severly depressed since starting the creatine but I never would have put that together. I just thought it was hd advancing. I have an axiety attack if I don't have a box of tissues in each room. I tried an antideppressant and it kept me awake and the same with antihistamines. I've been seriously cold my whole life and now I am having hot flashes. thaby lauraandpete - Huntington's Disease Support Center
I also have terrible allergies and I just found out really messed up hormones. My allergies used to bother me occasionally but since I had the flu a month ago my nose runs from when I wake to when I go to bed. I was even thinking maybe its possible that I'm allergic to the creatine because I started that about 1 month ago., I used to spend all my time and money trying to resolve these and oby lauraandpete - Huntington's Disease Support Center
I was definateley interested in the acr16 trial but I think the closest is 7 hours from my house. And I was reading about it and I'm afraid I might be turned away because of how unhealthy I am right now. I seem to have so many health problems and insomnia and my hd keeps getting worse i'm afraid I would go all that way and then get turned down. Or they might uncover some other health prblemby lauraandpete - Huntington's Disease Support Center
I was definateley interested in the acr16 trial but I think the closest is 7 hours from my house. And I was reading about it and I'm afraid I might be turned away because of how unhealthy I am right now. I seem to have so many health problems and insomnia and my hd keeps getting worse i'm afraid I would go all that way and then get turned down. Or they might uncover some other health prblemby lauraandpete - Huntington's Disease Support Center
Barb, I appreciate your words more than you know. I feel like you are the first person in years to actually understand excactly what I am going through and to put it into words. You give me hope because you found help with this and so many other things. Well its just making me cry because I am so tired right now. Lauraby lauraandpete - Huntington's Disease Support Center
I just wanted to thank everyone for their ideas and give an update. I seem to be alot like Dusty in the time I fall asleep and wake up and how hard it is for me to lay next to a sleeping person when I cant sleep. And Pete has never had a bad night sleep in the 26 years I have known him. Falls asleep at 10 every night and sleeps like a baby. I have been having sleep problems for at leastby lauraandpete - Huntington's Disease Support Center
Do all of your pHD's see their doctors regularly? How often does your pHD go? To the neuro? To the regular Dr? To the psychiatrist? We feel pretty unsuccessful with Dr.s here in NC. I'm not sure if it's the big hospital or clinic atmosphere or what. . . We went to see a neuro who is one of the big HD Dr.s and Laura was treated like a preschooler. Staff was coming in and out of the exam room as heby lauraandpete - Huntington's Disease Support Center
NPR covered this on Friday's All Things Considered (11/5). Follow the link and you can download/listen to the podcast. Maybe a nice change of pace instead of reading - reading - reading all the time. Peteby lauraandpete - Huntington's Disease Support Center
Bradley1978, I have reviewed some of our SSA documents and found that we submitted a "request for reconsideration" form (#SSA-561-U2) following the "unfavorable" decision. On that form we told the truth about HD. Progressive neuro disorder- no cure - fatal - all that. Laura hand wrote her condition and was brutally honest with how bad it is today how bad it will be. We alsby lauraandpete - Huntington's Disease Support Center
Ditto. . . Great Job.by lauraandpete - Huntington's Disease Support Center
Julia, Welcome to the forum. You have tons on your plate. My advice would be for you both to read this forum complete. I know it is a lot of work, but here you will be able to see what the HD world is dealing with present day and what you will be looking forward to should the worst happen. All scenarios regarding HD are noted here. The experts here provide excellent advice and support. You anby lauraandpete - Huntington's Disease Support Center
That's really good news. I am hopefull that Laura & I will be able to utilize this new center as well as web & phone support. It has always been difficult to know weather you are seeing a professional that knows what HD is. I can't tell you how many medical professionals we have schooled about HD. Sorry I couldn't make it to the chapter meeting in RTP. . . I hope it was informative anby lauraandpete - Huntington's Disease Support Center
I'm so sorry for your loss.by lauraandpete - Huntington's Disease Support Center
When I was still at work and my mom came to live with us and eventually went in a nursing home I took time off when I needed it under the family medical leave act. I don't know if this applys to you. Lauraby lauraandpete - Huntington's Disease Support Center
Angela, Your story and the story of your daughter are just heartbreaking! I have lost both of my parents but I know nothing can be more awful than the loss of a child. I didn't really have faith before my parents died but their deaths forced me to find myself spiritually. I even feel my mothers presence with me when I clear my mind and think about her its like she is with me and I can feel herby lauraandpete - Huntington's Disease Support Center
Thanks Will.by lauraandpete - Huntington's Disease Support Center
Will, Thanks for the info. Thats great about your brother. I've Wanted to try it for years but I'm a big baby when it comes to trying new things! I even had my mom on it years ago. When do you think I should get the bloodwork before or after trying it? Thanks again, Lauraby lauraandpete - Huntington's Disease Support Center
Does anyone else take it? Do you have any advice or side effects fom it? Also do you think its been a help? Thanks for your help! Lauraby lauraandpete - Huntington's Disease Support Center
Dave, I'm glad your experience was similar to ours and that hd centers are doing this! Lauraby lauraandpete - Huntington's Disease Support Center
We have seen a lot of posts about the social security forms that people fill out and we just wanted share our experience. Luckily Laura was diagnosed by a neurologist who is an expert in HD. It wasn't really planned we just got lucky that way. He filled out the forms for Social Security and long term disability so we didn't have to. LTD was approved right away and Social Security the second time.by lauraandpete - Huntington's Disease Support Center
Everyone here is so nice I'm starting to cheer up already! Eric I was laughing when I read you post! Lauraby lauraandpete - Huntington's Disease Support Center
Thanks Paula. We lived in Hunterdon county and loved it there. We had cousins that used to live in sussex and we went to the playboy club with them back in the 70s. Was that in sussex? We moved to raleigh to excape the high taxes and cold weather.by lauraandpete - Huntington's Disease Support Center