Sorry for your loss Dusty. Take care.by lauraandpete - Huntington's Disease Support Center
The last two time we went through the SSDI review process I was pleasantly surprised with the case worker at SS. He was able to pull Laura's file and review any areas of concern on the paper work with me over the phone. Any time I have to fill out SSDI documents I refer to Phil Hardt's page here . Also search out "SSDI' on this forum for additional research. When you fill out the applicatioby lauraandpete - Huntington's Disease Support Center
Here is the full bill language from the Library of Congress : JFB’s link takes you right to the letter. Here is the HDLF update from April 2013 when there was only 24 cosponsors. There are now 100 It’s pretty simple. Type in your zip code and the letter appears. You can customize it or leave it in the boiler plate text. After you send the letter, HDSA gives you the opportunity to aby lauraandpete - Huntington's Disease Support Center
We would like to wish you all a Have a peaceful day. Laura & Peteby lauraandpete - Huntington's Disease Support Center
I FORGOT TO PUT GREEN TEA IN MY SUPPS. Ive been drinking it for 20 years. Im drinking it as we speak.by lauraandpete - Huntington's Disease Support Center
I just wanted to tell everyone about the supplements I’m taking. A teaspoon of Trehalose with coffee once daily. Fish oil alternated with cod liver oil and coconut oil. I feel that has really helped with movements. Blueberry extract in pill form. I recently started back taking vitamin c caplets which has helped me with stability. I found myself bumping into things and when I started theby lauraandpete - Huntington's Disease Support Center
Check Consumer Reports for free at the library. My personal favs are Toyota - Corolla & Camry and Honda Accord. Peteby lauraandpete - Huntington's Disease Support Center
I wanted to see if anyone had any ideas about what worked well in their group and what didn’t. I would like to form a group that is for people with hd and by people with hd and not run by doctors and life coaches who know very little about hd and are geared towards the caregiver and not the Phd. Laura has always wanted to go to a support group meeting in our area but when she sees the formatby lauraandpete - Huntington's Disease Support Center
Melatonin is inexpensive. Laura takes it around 10:30 every night. Melatonin comes in several strengths. Getting the right dosage is key. 2.5 mg may not be enough for some and 10 mg may be too much. It now comes in time release. Laura takes the sublingual version (under the tongue) to bypass the digestive system which seems to work well for her. Vitamin Shoppe carries it. Peteby lauraandpete - Huntington's Disease Support Center
Thanks Nalo and good luck. Steve, I'm not sure at this point. Just putting some feelers out. Feel free to PM me if you would like to keep your comments private. Thanks, Peteby lauraandpete - Huntington's Disease Support Center
Welcome Jen.by lauraandpete - Huntington's Disease Support Center
Nalo, Where are you located? There are folks on here that can point you towards a neuro in your area (hopefully) that has experience with HD or as Mikee said a movement disorder specialist. I looks like you need some answers and your docs aren't providing or they are shying away for some reason like lack of experience with her particular condition. Maybe what your doc observed was outside theirby lauraandpete - Huntington's Disease Support Center
Quick survey. . . Are you involved in a HD support group? Could you provide me with any details about why you like or dislike your HD support group? Thanks for your help. Peteby lauraandpete - Huntington's Disease Support Center
I take turmeric for arthritis and learned it can interfere with certain medications particularly heart meds. 500mg 2x/day.by lauraandpete - Huntington's Disease Support Center
Take a look.by lauraandpete - Huntington's Disease Support Center
This is such a great show. My son purchased the first four seasons for me. When that scene came up with Walt talking about his father I thought it was going to become some sort of side topic but it was dropped just a quickly as it came up. It's interesting though. There must be someone on staff there with HD in thier family. Peteby lauraandpete - Huntington's Disease Support Center
I have the same problem. I mentioned to my dr but he didnt really have any ideas.by lauraandpete - Huntington's Disease Support Center
Hi everybody. I just wanted to give everyone an update. It’s been 4 or 5 months since I had the hysterectomy. It was a robotic assist procedure because of the size of my uterus. I was really worried about the anesthesia but when I woke up after the surgery my first thought was that my brain was fine and it wasn’t hurt by the anesthesia. Recovery was a little bit hard at the hospital and aby lauraandpete - Huntington's Disease Support Center
Doneby lauraandpete - Huntington's Disease Support Center
HDSA has a webinar coming up on March 25 titled: Applying for Disability Benefits for HD: The SSA Perspective - May be of some interest.by lauraandpete - Huntington's Disease Support Center
This is a little more clickable. . .by lauraandpete - Huntington's Disease Support Center
Pleasae read over Phil Hardt's page. It's packed with a ton of stuff for your exact situation. Peteby lauraandpete - Huntington's Disease Support Center
I think that was the third recert process we went through since 2005. Additionally, I used Phil Hardt's page as a reference. Peteby lauraandpete - Huntington's Disease Support Center
Laura & I just went through the SSDI review process. We had a neuro appointment already set in anticipation of the review. The forms are 'SSA-3380 Function report 3rd party' which I filled out and 'SSA-3373 Function report adult' which they want the disabled person to fill out. You can search them out on SS site for review. The forms do ask for doctor info, dates, reasons etc as well as supplby lauraandpete - Huntington's Disease Support Center
I hate to see this post go by the wayside since there are so many with at risk kids including Laura & I. Our son is 20 and our daughter is 21. We couldn’t live with ourselves having them not know as they were getting older and it was freaking us out. It was a secret we kept from them and in hindsight; I think that was the wrong decision. I wished that we had told them much sooner. As it turby lauraandpete - Huntington's Disease Support Center
I like the card because it's quick & dirty. I don't know how many pHD's have a license. Laura still carries her expired license for ID but doesn't drive. I have the card in her wallet as a back up. Just incase we get seperated when we are out. Just in case. The card is informational. If you did have a confrontation with the law and whipped out the card I think most officers would take HD intoby lauraandpete - Huntington's Disease Support Center
Here is a similar thread from a few months back and the link for the pamphlet Peteby lauraandpete - Huntington's Disease Support Center
You can also download a pdf version to your pc. Peteby lauraandpete - Huntington's Disease Support Center
Hey Chrystal. Welcome to the forum.by lauraandpete - Huntington's Disease Support Center
Happy new year everyone. Make it a good one.by lauraandpete - Huntington's Disease Support Center