so sad HD SUCKSby Jamie - Huntington's Disease Support Center
thank you Alice...by Jamie - Huntington's Disease Support Center
To sit in a room and not know the touch of someone that u love so much...to wait just hoping their words you'll hear, of how they love an hold u dear...to see anquished lips, where a smile should be..would build an ever lonely darkness in me... Then her eyes, they would shine like stars in the sky, they would follow me as I walked by, focused on me wherever I'd go, steadfast even while her bodyby Jamie - Huntington's Disease Support Center
Thank you! Trying to get the CT chapter re-established. about 200 people walked this yearlargest group so far! making strides. Jamieby Jamie - Huntington's Disease Support Center
walking this weekend... anyone interested feel free to forward on. thanks Jamieby Jamie - Huntington's Disease Support Center
Thank you everyone... I wish you all the best. Jamieby Jamie - Huntington's Disease Support Center
I miss the way you sat there, Staring from afar. The smiles that shot across your face, as we sang in the car. The evil smirk, those brightened eyes, when you tried to kick my ass. How you held my hand and pranced about that last day in the grass. How you hadn't talked for what, seemed more than a year, and how our hearts lifted up, that day as you saw and shouted "DEER" Thoby Jamie - Huntington's Disease Support Center
My wife's movements had become so severe that they were really effecting her, constantly thrashing rocking,kicking, her weight was way down and we really didn't think she would see the holidays. I brought her into our COE and she was immediately recommended TBZ. That was over two years ago. She has done very well on it, yes there are possibly severe side effects,so they started her at a veryby Jamie - Huntington's Disease Support Center
Northwestern sent us a letter saying they would not insure my wife unless she agreed to take the test and would insure her only if it was negative. I was like, if its negative... I don't need you but that was back in 2002 so I am not sure if it is relevant. Jamieby Jamie - Huntington's Disease Support Center
oops Sorry RJ, I should have clarified that it is (MY) daughters perspective. It was her answer to an interview question. She is amazing! Jamie(her dad)by Jamie - Huntington's Disease Support Center
My wife is currently on: Klonopin Risperidone (not Risperdal which cannot be taken with TBZ) Zoloft (happy pills) Mirtazipine (anti-depressant it is also a sedative so helps her sleep) Tetrabenazine (to alleviate Chorea)by Jamie - Huntington's Disease Support Center
My daughter wrote this for an interview. I felt it should be shared... Growing up my life was perfect. I lived with my Mom, Dad, and little sister. We had a cozy little house in the heart of town, and a big family with an unconditional love for one another. As I grew older I watched some of my friend's parents get divorced and even some parent's pass away. I prayed each night that my famiby Jamie - Huntington's Disease Support Center
Sorry for what you are going through right now. There are protocols for testing for HD for reasons just like this. Those protocols include a lot of therapy and discussion before the test, before the results and afterwards. Your feelings are quite understandable. You really need to talk with a specialist. If there is not an HDAC center near you maybe there is a hospital in your area that haby Jamie - Huntington's Disease Support Center
Hi AR- My wife has been on TBZ for about 2 years now, it is being used to control her Chorea which had gotten so extreme that she could not function at all and was losing so much weight it became life threatening. It works very well for her,I truly believe she would not be here any longer without it but it requires a doctors scrutiny due to the possibly severe side effects.(as described inby Jamie - Huntington's Disease Support Center
Thanks Everyone. That is exactly the input,I was looking for! It was a geri chair that we were looking into when someone suggested a Broda chair for her. The rep came out with a chair that fit her perfectly based on info he took over the phone. one minor drawback (doesn't roll well on carpet) and one major drawback (the price). That said the chair really is remarkable. She seems mucby Jamie - Huntington's Disease Support Center
Hi- Has anyone had any experiences with Broda(sp) chairs? I have heard they are very helpful for people with HD so I have the rep coming over tomorrow but the cost is very expensive almost prohibitive. I would like to hear personal experiences good or bad. Thanks Jamieby Jamie - Huntington's Disease Support Center
Most if not all of HOuse Episodes as well as other fox network shows are available for free over the internet on www.hulu.com they stream very fast and are great quality. They are normally available the day after the original airing. and the commercials are much shorter then network TV Jamieby Jamie - Huntington's Disease Support Center
I am so sorry for your loss. Jamieby Jamie - Huntington's Disease Support Center
Hi Jason- Write a letter to the different supplement Mfgs explaining your situation. I am sure some will be more than happy to help if you just ask. good Luck Jamieby Jamie - Huntington's Disease Support Center
Thanks Everyone. It started over the Easter holiday, I had taken the kids to Fla (Kristi didn't want to come) so she stayed home in CT with my Mother but she got a high fever so she was admitted to the hospital. (turns out her bowels were impacted poor thing). I think whatever meds they were giving her must've contributed to her teeth grinding because it seems to be going away. Now I haveby Jamie - Huntington's Disease Support Center
Hi- has anyone had issue with this? We finally get her weight somewhat under control but now I am afraid she won't have a tooth left in her mouth she grits her teeth so hard. it goes on for long lengths of time, all night long last night. I just left a voicemail for the docs but any suggestions? Jamieby Jamie - Huntington's Disease Support Center
Thanks everyone. we've been giving her the ensure, rice pudding, We are going to see which supplement she likes. I gave her some cookies and amazingly she started saying "MILK" which is the first word other than no that she has uttered in over a year so I am giving her milk even though it isn't recommended. I was so happy hearing that word, funny what this damn disease can do to you toby Jamie - Huntington's Disease Support Center
Hi- Even though my wife is on TBZ and her movements are very controlled she has recently started losing an awful lot of weight, so much so that I am fearing the worse soon if we can't intervene. unfortunately my wife was adamant about not having a feeding tube. amazingly that is one of the few questions she will still answer verbally. spilling probably half of what we give her and while Iby Jamie - Huntington's Disease Support Center
get the application for yourself and have a look at it, most times the ones that are garaunteed form work do not even have health questions on them. good luck Jamieby Jamie - Huntington's Disease Support Center
My hearfelt condolences to you and your family. Jamieby Jamie - Huntington's Disease Support Center
Dear Dove- you sound like an amazing wife, Unfortunaetly this damn disease puts everyone thru the ringer . I believe that you will know what to do then make the best decision for both of you however hard it may seem, because whatever you decide that decision is being made with love. all my best wishes for you Jamieby Jamie - Huntington's Disease Support Center
Hi Chris- I went through all this back in 2002 yes the LTD is reduced by the amount of the SS you recieve but there was a 10% difference cap meaning even if it is a complete offset the LTD co was still responsible to cover 10% on top of any SS. I don't recall that being part of the plan I think it was SS or national insurance guidelines I would check to see if that is still the case.by Jamie - Huntington's Disease Support Center
the policy was in effect for 3 years? and now they want to cancel it? in every insurance policy I have read there is a "2 year evidentuary clause" whereas after 2 years they cannot cancel the policy for any reason other than non-payment. They can't even cancel it if you LIED on the application!It is up to the insurance company to check out the facts before issuing the policy and up tby Jamie - Huntington's Disease Support Center
OMG this post just made me laugh and cry!!! My wife would write notes to remind me of things, in the middle of the night she would recall a school function or something and write it down then stick it on the mirror for me to take care of in the morning. one morning I awoke and my message on the mirror was........... "DUCKS in CLOSET" to this day I am nby Jamie - Huntington's Disease Support Center