Our son who is 26 and has a CAG of 46 seems to be already showing symptoms What is your CAG or your person who has HD and what age did they start syptoms?by Nila - Huntington's Disease Support Center
We are so very thankful to get a negative result for our oldest son Chris who is 28 years old. But it's with joy and sorrow interwoven as we still have two more son's at risk! When they are ready to test we are hoping for the same good news. It's been huge rainbow in this storm that never ends.by Nila - Huntington's Disease Support Center
I have heard that we need some tissue but I think I would be very surprised if it was a "Feel good movie of the year" because really you can't sugar coat this devastating disease! The reality is it is very sad! but just hoping it helps friends and family understand it more.by Nila - Huntington's Disease Support Center
Trying to get Alive and Well to our area so let them write up a story about Bob, Exeter and HD. Nilaby Nila - Huntington's Disease Support Center
Hi Mike, Not sure how far into the Disease you are but if you go through CCI.org it can take awhile, one to three years, so you might want to start the process! We got Exeter within 10 months but usually the waiting period is 1 to 3 years so good luck to you and thank you for all your comments. Katinka, Thank you, he is a very special dog and touched the heart of so many!by Nila - Huntington's Disease Support Center
Not sure if he could find his things for them, In the video you teach them where things are to get for them like the phone and a soda out of the fridge. The video shows how he helps and as they become even more disabled you see how the things the dog can do will help more and more, depending on the stage he is in Cci would determine if he is able at this stage to handle the dog on his own and keeby Nila - Huntington's Disease Support Center
Thank you Mike, I would totally recommend Canine companions for Independence, they are an amazing company who donated Exeter to Bob and he has helped our whole family so just go to CCI.org sand check out the company. Bob is taking medication 4 times a day for his movements and has enough cognitive issues that we work as a team with Exeter. We have had him for 4 years now and it's the best thing wby Nila - Huntington's Disease Support Center
Here is a video of Bob and Exeter! Bob was diagnosed in 2007 after 5 to 6 hers of symptoms that we did not understand. Bob was adopted at birth so we did not know his medical history.by Nila - Huntington's Disease Support Center
I think i figured out how to get it to all of you! Here is the link! Love Nilaby Nila - Huntington's Disease Support Center
Hi Mike Emailing it seems to work after I uploaded it to my google drive so if you want to see it send me your email…Thanks Nilaby Nila - Huntington's Disease Support Center
Sorry looks like they took it down for copyright issues! not sure why except i used songs from iTunes but i also made sure i gave the credit to those who's songs they were but i guess i was still wrong.by Nila - Huntington's Disease Support Center
We have been filming my Husband with his Service Dog Exeter who was donated to Bob from Canine Companion for Independence. He has been the sweetest gift to Bob and our whole family!! We have 3 sons at risk and now two sweet daughter-in-laws, Exeter takes care of all of us. Here is the Youtube link to watch this film…by Nila - Huntington's Disease Support Center
My Husband tried it and felt no different…but i have heard of another who is on it and not sure if it is helping him or not.by Nila - Huntington's Disease Support Center
Does anyone know how we can watch this new film our on HD...It came out at the Seattle Film Festival May 22 and 23? Thanks Nilaby Nila - Huntington's Disease Support Center
Thank you so much we will try it...We use coconut oil for cooking...Nilaby Nila - Huntington's Disease Support Center
Has any other PHD been on prednisone?? and if so did it seem like it progressed the disease??? They have put my Husband on it for a rash he has had for 8 months (Exzema) it is the only thing that keeps the rash under control but since going on it the disease has just seemed to have taken off!! Thanks for your help...Nilaby Nila - Huntington's Disease Support Center
Sorry i tried sending a pic but don't know how to do it on here...Nilaby Nila - Huntington's Disease Support Center
We have a Service Dog who helps my Husband who has HD....We highly recommend it!! Exeter is a Highly trained Skilled Service Dog from Canine Companion for Independence or CCI.org we had to go through a lot of paperwork and our Neurologist had to right the company and tell why he thought it would Help my Husband also we went to the facility for a all day interview and the trainers researched the dby Nila - Huntington's Disease Support Center
We have a Service Dog who helps my Husband who has HD....We highly recommend it!! Exeter is a Highly trained Skilled Service Dog from Canine Companion for Independence or CCI.org we had to go through a lot of paperwork and our Neurologist had to right the company and tell why he thought it would Help my Husband also we went to the facility for a all day interview and the trainers researched the dby Nila - Huntington's Disease Support Center
My Husband was arrested 3 times and then un-arressted when they found nothing...he no longer drives but we have now gotten a lab/golden service dog that was donated through CCI.org and he has been the greatest blessing...now when my husband has a melt down in the store there is compassion by others as they see the service dog and know there is a medical condition...when they see him appear drunkby Nila - Huntington's Disease Support Center
This is the program we were told to get through Apple...Have heard it is a great Assistive Device...My PHD is not ready for it but i think they think it is wise to get them use to it before they need it and then it will be easier for them.by Nila - Huntington's Disease Support Center
Oh...bummer...Thanks for checking though...Nilaby Nila - Huntington's Disease Support Center
Wow!!! Have you all seen this yet?by Nila - Huntington's Disease Support Center
What do you mean by a canned response? would they not answer your questions...I'm wondering to what is going on now with the reporter that was trying it! Thanks for taking an interest and looking into it...Nilaby Nila - Huntington's Disease Support Center
Here is a response to Jeff's Article from the people who worked on the protandim study...Not sure I understand it all but maybe some of you will Hey Team, good morning! It's been suggested that this article and subject matter be examined a little closer. Here are a few people that have offered up additional data and greater insight regarding the article. Stu: The article you recentlyby Nila - Huntington's Disease Support Center
This is Jeff's response to my questions, Hi Nila - There's been no clinical trial done on Protandim, so from a scientific point of view there's unfortunately nothing to say. As described in that recent article, just blocking oxidative stress might be problematic - there's evidence that some of the stuff that oxidative stress does has a normal role in how the body works. Some of the compby Nila - Huntington's Disease Support Center
I did send him an e-mail today so we will see what he says i will let all of you know...Nilaby Nila - Huntington's Disease Support Center
No not yes...he has only been on it a month and they say to give it at lease four months...hoping for the best!by Nila - Huntington's Disease Support Center
Hi Jeff just a few questions on your article i found on HDSA.org, was wondering if any of you have heard of Protandim? my Husband has Huntington's Disease and someone sent us a link to this ABC Primetime Report on how it targets Oxidative-stress, we decided to give it a try and Bob has been on it for a month now, we have not got his blood work done yet but are getting that done on friday. After wby Nila - Huntington's Disease Support Center