My condolences. While I feel so sorry for your loss of a Love One, I can’t help be feel some happiness knowing any Person is no longer suffering with HDby JFB - Huntington's Disease Support Center
not facebook, but there is a group email list hdcaregivers@googlegroups.com I never got around to being "social" so I don't do Facebookby JFB - Huntington's Disease Support Center
what a coincidance. I haven't visited here for what seems like years also. but just now I missed a book mark and hit HDLF. I am the caregiver for my Wife. Before that, We took care of her younger Sister till she passed (and then the Wife's symptoms started. I can't recall how long ago that was AND I preferr not to think about going through those years as I was very near having her commeby JFB - Huntington's Disease Support Center
I did read it and was searching where to purchase. the "Peoples Pharmancy" radio show hit just got me side tracked. I plan to get some on next trip to townby JFB - Huntington's Disease Support Center
just a quick look from google hits for melatonin... A radio show comments on sleep aids was benadraly may cause dimentia and melatonin may cause brittle bones...there is no win!by JFB - Huntington's Disease Support Center
I have been using benadryl for year or so. Some where I am thinking I thought I read it had some neuroligical value for HDby JFB - Huntington's Disease Support Center
would you care to share what pills?by JFB - Huntington's Disease Support Center
Thanks for the update, sorry it is not better news though. I constantly worry how many days my wife is behind similairby JFB - Huntington's Disease Support Center
all I can offer is that I understand your concern and situation. I don't know. stay strong Joe/NCby JFB - Huntington's Disease Support Center
welcome back Patty.... I have not been active here, just visit ever so often. I feel for your loss of your Husband. I can't express condolances well so please just understand.by JFB - Huntington's Disease Support Center
don't know if this is real or not, A trailer for the movie with a Korean familyby JFB - Huntington's Disease Support Center
here is one link from a google search...by JFB - Huntington's Disease Support Center
Please bear in mind my cynical nature when reading my opinion The treatment of the symptoms would be similar whether the reason is HD or other. If there is a possibility of HD, then, if there is any difference (and I doubt there is) the medication to treat the HD generated symptoms should be first tried. I would be concern that if a diagnosis of HD is made, that gives Dr. the excuse notby JFB - Huntington's Disease Support Center
thanks for sharing, I recalled a lot from when you were going thorough most chapters...seems like I lost track around C14, but for the last couple years I have not visited HDLH as frequent You are a GREAT FATHER Howard Joeby JFB - Huntington's Disease Support Center
Just repling to let you know someone is reading your post and while I can understand since I am currently going thorough similair, I don't have any good words of advice or encouragement. Denial can be part of the diease. It really isn't denial but a more complex condition of "unawareness". Depending upon your husbands knowledge of the progression, denial may be good. when one &by JFB - Huntington's Disease Support Center
Tyler, I admire your desire to support your Wife's wishes. I would even venture to say that Her (and Your) past experiance dealing with the progression is better knowledge than what you could get from others. My Wife is not as advanced, but has only had one visit to an "HD expert" (for her) and it was actually detrimental. and as far as she is concern, she does not have HD.by JFB - Huntington's Disease Support Center
while this is an excellent site, there is an Yahoo Group just for HD Caregivers. the email exchanges there can get very explicit in the challanges and issues faced as the group members are restricted and exchanges private (not internet searchable). To join, you must submit a profile for concideration and it could take a couple days for acceptance as for your question, YES. I have experby JFB - Huntington's Disease Support Center
How is Allison? Joe/NCby JFB - Huntington's Disease Support Center
How is Allison? Joe/NCby JFB - Huntington's Disease Support Center
I am so sorry to hear what Allison is going through. I cannot imagine the anger you are going through also. As for the Hospice assistance, besides the Neuro, have you requested assistance from the hospitals ER Dr and thier staff. They should be able to rewrite the directive for hospice to emphisize the other ailments that are reducing her life expentancy (no reason to even state HD). I knby JFB - Huntington's Disease Support Center
Mindy, you do have a lot of challanges in your life right now. I pray that your Husband does well with treatment. From just the few words you have written, you do seem to have a good grasp of the consequencies if your father tested positive. I get the feeling You already know! I am a caregiver so I do not know how I feel about testing. as I write, I realize that in the 30 years of dealingby JFB - Huntington's Disease Support Center
I went back and what they want is a reply that rates 6 services from 1 to 6 , not a rating for a service (if that makes sense). that is how the other survey groups are also. Given I have never experanced any of the services mentioned in my 30 plus years of dealing with HD, I couldn't do the survey and replied back to HDSA the same. The only thing I did see a reconized is the "Drs gby JFB - Huntington's Disease Support Center
has any one else recieved an email from "the premier nonprofit organization..." requesting to tell them what you value most from HDSA? here is a link to the survey if intersted I started to fill it out but the survey has a glitch and not let me choose the same reply twiceby JFB - Huntington's Disease Support Center
My sister in law also drank constanly, usually Mt Drew. My Wife never has.by JFB - Huntington's Disease Support Center
back in the early 80's, prior to internet, extensive data banks and facebook; a young Doctor was able to locate my wife while we were traveling the US for work to get a blood sample for the research trying to identify the gene. back then, someone was tracking HD familiesby JFB - Huntington's Disease Support Center
For the record, I did say nor mean to imply I was looking for financial support. for that part, I have not pursued any government assistance. Not to say that before this journey is over I, we, or the wife will probably be distitute and require such. there is not a COE near for me to benifit from thier resources nor was I aware that HDSA financial supported the COEsby JFB - Huntington's Disease Support Center
As for HDReach, I'll admit I have had very little contact with them. I have called multiple times to request "help". So far there is nothing within thier capibility. the best offer so far has been to attend the monthly meeting This posting and the email this week about Mary "leaving" Duke just peaked my interest in the compensation for a nonprofit. The latest filed 990by JFB - Huntington's Disease Support Center