does anyone have an handle 0n how many pHDs are veterans?by normzach - Huntington's Disease Support Center
HDSA has a couple of Guides left, they are sending me one. They indicated the guide is/will be reprinted. Appreciate the comebackby normzach - Huntington's Disease Support Center
It's been awhile since a visit. Am becoming involved, again, working with a local family who have just found out HD is in their family. Trying to gather some information for them, specifically A Physician's Guide to HD published by HDSA. However, seems that HDSA, in their infinite wisdom, has ceased support the publication, along with several others. Too bad, as I used the Guide to educateby normzach - Huntington's Disease Support Center
I am impressed, two sentences 242 words.by normzach - Huntington's Disease Support Center
Don't know if this will get benefits based on preexisting conditions , however it should help getting medical records updated to include HD. Don't know all the in and outs, but it is a first step. Sometime back, the VA undertook a "million veteran" study where they drew blood from vets for study and analysis at Mass General (I think), this maybe be a fallout of that. Good idea foby normzach - Huntington's Disease Support Center
And, here is a good place to start before you meet with a VA rep or VSOby normzach - Huntington's Disease Support Center
Let me qualify my remarks Ms. America applied for medical benefits as a veteran, once approved she applied - with the assistance of a VA benefits rep - for catastrophic disability. Again, recommend you contact a veteran's service rep at one of the veterans' organizations or at state level. It is a tough go and they give you advice and assistance.by normzach - Huntington's Disease Support Center
Yes. We worked with the VA benefits rep assigned to the local military base to file Ms. America's application for catastrophic disability due to Huntingtons, which was approved. Included were statements and diagnoses from John Hopkins University - most important as correspondence from known and respected medical institutions carry more weight with the VA than those from local care providersby normzach - Huntington's Disease Support Center
Early on I discussed with the folks at John Hopkins about using medical marijuana to help alleviate Ms. America's symptoms.. Basically, their response was there is no evidence, based on scientific research, to support the use of marijuana to help pHDs and that she would just end up getting high. My guess is that if the question was asked today, the response would be the same. And I guess, tby normzach - Huntington's Disease Support Center
Appreciate the comeback, LizzieAnn.by normzach - Huntington's Disease Support Center
LizzieAnn, If you don't mind, please tell me which COE supported your husband's claim for disabilty. Thanx, Fred Lothropby normzach - Huntington's Disease Support Center
Interesting LizzieAnn, Have not heard of VA approving 100% disability for HD. It would a great service to vets with HD if the social worker at the COE that supported your husband's claim would document the whats, who's, and how's of the process the doctors went through in determining your husband's HD via video's. And, then sending down through the COE chain so other centers will know and unby normzach - Huntington's Disease Support Center
When swallowing problems started a couple of years ago, Ms. America was referred to a speech pathologist at the local MedStar hospital. She put her on a diet requiring mashed/crushed food and liquids thicken to nectar consistence. However, as swallowing problems became more frequent and intense, her diet was changed to pureed foods and liquids to honey consistence. Swallowing problems persist anby normzach - Huntington's Disease Support Center
Got thinking about veterans’ benefits and related questions, particularly from vets with Huntington’s Disease and their care givers, that surface on this and other forums. After going through the process and continuing to work to find other VA services that can help Ms. America, have jotted down few thoughts that may help others get started Eligibility – check eligibility as it has changedby normzach - Huntington's Disease Support Center
over the course of what seems to be several life times, a stress reliever has been my occasional rants about the lack of HD education at the local primary care and medical specialty levels. Ms. America just finished up a round with a speech language pathologist at the local MedStar facility to address dysphagia issues. During the sessions we took the opportunity to educate yet another medicalby normzach - Huntington's Disease Support Center
Link to the FDA public meeting on HD and Parkinson’s Disease patient focused drug development held last week. Recordings and transcripts of the four sessions, HD is the subject of the first two sessions, are included in the link ucm451807.htmby normzach - Huntington's Disease Support Center
Nice presentation, good item, needed publicity Fred Lothropby normzach - Huntington's Disease Support Center
kathleen. more specifics about the osteoporosis HD link plseby normzach - Huntington's Disease Support Center
typically, some one did not do their home work. back in my day it was called attention to detail.by normzach - Huntington's Disease Support Center
Some time ago attended a thing sponsored by the Virginia HDSA chapter – Drew Yeannakis of Disability Claims Representatives, out of Charlottesville, VA, gave a talk about filing SSD claims. Was wondering if anyone maintains a listing/directory of specialists/attorneys working the social security disability field to help pHDs. Queried the HDSA web site overall and several of the pull downs – nby normzach - Huntington's Disease Support Center
Maybe a formatted response, but Hoyer's staff took time to research the HD parity act and where it was in the system. highlight is mine. "Should legislation regarding your concerns be reintroduced in the 114th Congress or be considered by the full House of Representatives, you may be assured that I will keep your views in mind. I hope you will continue to be in contact regarding the manby normzach - Huntington's Disease Support Center
Which raises another question, why are there are no up to date and accurate numbers for prevalence and incidence of HD in United States? It seems to me if one is the self proclaimed premier non profit and leader in HD research it would imperative to know the magnitude of the problem, how many and and how often. Which, if known, will equate to dollars and results. Which will result in better qualby normzach - Huntington's Disease Support Center
HDSA bashing? Some of us, as in this thread call them out. What I read, there are plenty of us who are fed up with a "premier" organization that uses funds raised by the community for research - as advocated on their web site - to pay down debt ; fed up with an premier organization that changes focus, depending on how the wind blows; fed up when it brags about their network of COby normzach - Huntington's Disease Support Center
I think Marsha and Steve are referring to a Board of Directors for HDSA - no compensation for serving - not clear if that is the Scientific Advisory Board or the Board of Trustees identified on the HDSA web site. Believe Brent is talking about Vitter and her staffers, 19 listed on the web site to include an all important Information and Fulfillment Aide.by normzach - Huntington's Disease Support Center
don't know where you are Arnold, but there is always a cold one for you, something cooking on the Big Green Egg and someone to talk with here in the south of Maryland. And you are spot on, living with HD is the pits for pHDs and for those trying to give some quality life for our pHDs. Fred Lothropby normzach - Huntington's Disease Support Center
Just to make feel good about your charity work, a tariff is levied y HDSA on each dollar raised by the community by "Walks" and other funding raising efforts unity in field to support the Association's overhead. Washington DC's motto on their license plates " Taxation Without Representation" may be appropriate for those getting fed up with the "Premier Non-Profit"by normzach - Huntington's Disease Support Center
May well be. But then, I am too old to be insulted and have been in this business too long to feel condescended upon by anyone, even the POTUS. I see it is an opportunity for someone with creds in the community to put together a one pager - HD is, background on HD parity senate and house bills, and impact on the community because HD is not recognized by SSA , as are ALS, Parkinson's, Aby normzach - Huntington's Disease Support Center
Davy Crockett's descendants, who are at risk for Huntington's Disease, asked President Obama at a Press event for assistance since they have been denied Social Security benefits. How did we miss this? #cureHD Ihttps://www.facebook.com/wjhlTV11/videos/824192627646765/ Man from Bulls Gap, TN asks President Obama a question President Obama visited Nashville today to address a crowd and tookby normzach - Huntington's Disease Support Center
Amen Brother, HR 678, the parity act, was probably their one time on the big stage and they stumbled, badly. . It was huge deal as it impacted on the entire community and given the current political environment, it will sometime before that window opens again, Corporate culture, at least from my view, seems to be their block to getting things done. .Have beat the drum for some time, butby normzach - Huntington's Disease Support Center
Steve Ireland, Were you able to get any traction for your idea "Imagine the Perfect Huntington's Disease Family Care Center" ? Imagine taking the lessons learned, using interviews, observations, participation from across the community -folks in North Carolina, Philadelphia and Georgetown MedStar come to mind - rather than force feeding an academic concept of what is neededby normzach - Huntington's Disease Support Center