I agree... NC has a nonprofit called HDReach, I have been on their mailing list for a year or so. I get calls to attend a monthly meeting in which time I ask what are they actually doing to help. during the call yesterday I asked for thier official lisiting as a nonprofit so I could find thier 990 since HDReach was a DBA name. they claim to be providing aid to hundreds of people. IF such aby JFB - Huntington's Disease Support Center
Marsha Wrote: ------------------------------------------------------- > Whoa! are you telling me that the chairman and other officers are not paid!by JFB - Huntington's Disease Support Center
I have read your post Arnold do what you can and know you are doing something very good.by JFB - Huntington's Disease Support Center
must be good money for the board members of such orginations. NC HD Reach has a new full time chairmanby JFB - Huntington's Disease Support Center
Fred, please do not feel I am aurguing, I agree that the event does open a window of oppertunity. I would think that such encounters with the POTUS do have a little prewarning and that some one from HDSA at that time presented the question, explaining Mr Crocketts history and then Mr Crocketts plea for help. From that little snip, I don't think the seriousness of HD was even reconized bby JFB - Huntington's Disease Support Center
I thought the POUS remarks were very insulting and condescending.by JFB - Huntington's Disease Support Center
I also don't recall ANY improvement (or any assistance at all) here in NC either. I wonder what their rating would be within the HD community. I guess you can't give a grade to an absentee.by JFB - Huntington's Disease Support Center
I'll side track on my Cymbalta experance. I needed something to replace the stuff I had taken for years for back pain. the Dr's assistance suggested I take Cymbalta and gave me a 2 week trial. I started over the weekend and went to work the following week. I don't remember that week at all! I threw the rest away an SSRI worked wonders for my wife. It took multiple prescriptions of varioby JFB - Huntington's Disease Support Center
C4HD, I am also very concern of who will take care of my wife if she out lives me (which is a good possibility). Something I have been meaning to do for a long time is to call the County Clerk of Court and talk with her. I have attempted to talk with a Lawyer, but that did not result in increasing my knowledge nor a plan. The Clerk of the Court would be the legal agency that would take oveby JFB - Huntington's Disease Support Center
my Wife will be up late tonight also (and I have someone showing up early to do some plumbing repairs) she is all excited, extreme chorea and yelling while watching "big foot" programs on TV You might want to join this Yahoo groupby JFB - Huntington's Disease Support Center
You are not alone, unfortunately. But having others in the same situation is not any help, is it? excluding taking the swallowing tests, I could have written your post (and I am farther away from Austin!) JFB in NCby JFB - Huntington's Disease Support Center
I searched and could not find the #2 survey. if you have a better link, I would try it. as for the 1st (the stress survey), I recall it stated you will find the questions could cause distress and at the end it would provide support....that support was a link to HERE!by JFB - Huntington's Disease Support Center
I don't think I took the same survey you discribed. after a couple pages of background infromation, all the survey asked about was the emotional attitude of the caregiver (and as I said the questions and the provided responses did not match. the last page being so confussing, I just had to choose the center response , don't know)by JFB - Huntington's Disease Support Center
I just finished and found the questions and responses not relevant to the other. it was only a couple pages after the personal stuff the "suvivoir guilty" questionair made absolutely no senseby JFB - Huntington's Disease Support Center
maybe not the same, but for the few days my wife tried TBZ, she complianed about numbness in legs and arms with the added discription of "feeling like they were cement"by JFB - Huntington's Disease Support Center
I can't anwer, but I do KNOW that track any one who every gave them a cent, asking for anotherby JFB - Huntington's Disease Support Center
If Vicky is reffering to the Yahoo group, that would be You will have to submit a request to join, but the reply should be fairly quickby JFB - Huntington's Disease Support Center
I can very well relate to the neighbor complaints. on a far fetched ideal, given HD is a disability, maybe discrimination can be applied and the property owner have to make consessions to accomadate. Might be worth a call to a lawyerby JFB - Huntington's Disease Support Center
I am so glad that Marsha has been able to reply to you. I think I am reading that she feels the same that this is not end stage. the change of enviorment alone would trigger similar response with my wife and a change in medication would just farther complicate things Is the Dr that prescribed his current medication available to inform the hospital of his condition and work with them to geby JFB - Huntington's Disease Support Center
If she is still wanting a divorce, I would be doing every thing possible to get it then. I have always thought that once a spouce is deemed incompendant, divorces would not be granted, but that might not be the case from others experance, but why chance it.by JFB - Huntington's Disease Support Center
Of course the wife will be in denial, that is part of HD (that some experaince), but why would the father be? If he is refusing to take care of his daughter since you have left her, maybe he just doesn't want to set a president, nor show that he relequishes you from that responsibility had you wife's sister ever married? maybe you could use testing as a condition of getting a devorse. Ifby JFB - Huntington's Disease Support Center
It is good to hear she still has family (Father) that may be caring for her. However, I would be very concerned with the legal aspects of her actions since you should be aware of the progression of HD. the other would be responsibility for her care when it becomes enivable. Once HD has progressed to the stage where "you can't mention...", You need to reailize it is too late to disby JFB - Huntington's Disease Support Center
Does your X-wife have someone else that is being responsible for her and taking care of her as the HD progresses? Do you still have any legal responsibility for her actions? Allowing her to drive is irresponsible and negilagant on the part of whomever is taking care of her. Do you think she would realize the consequences of violating a "protection order" if she drives under theby JFB - Huntington's Disease Support Center
Howard, I agree ... you were scammed! at least they only got the first (and only) $100 contribution from me. Joeby JFB - Huntington's Disease Support Center
I don't want to reduce your hopes. My "experance" with the HD specilist at Duke (in NC) did not go well at all. My impression was that the specilist are actually for a broader class of practice with HD being included. In our case the specilist could ONLY see movement disorder and that is ALL he want to address. My concern was behavior and the wife did not have any chorea but he stilby JFB - Huntington's Disease Support Center
Have your mother and brother seen any other member of your Father's family with HD? I ask due to wondering why your Mother does not want to acknowledge the fact. (I understand why your Father would not as it could be a symptom). I am thinking she has not. Are you still caring for your Father? Is he showing any chorea as that is the visual symptom that should cause your Brother to ask aboutby JFB - Huntington's Disease Support Center
pal Wrote: >..., I try to be paient with it but failing as I work from home. Customers have asked me to just review documents while I am unable to work and I have to refuse. I use to work with turbine engines roaring close by and able to concentrate, but there is no way I can do it with the wife's yellingby JFB - Huntington's Disease Support Center
My Wife's is normally as she tries to warn Daniel Boone or Matt Dillion!by JFB - Huntington's Disease Support Center