LizzieAnn is right - for retired vets, when eligible for Medicare, Tricare For Life kicks in as the secondary insurer. Doubt if it kicks in automatically as you and dependents have to be in the DEERS system - may want to check in person. Have to pay Medicare A and B premiums - but TFL is no cost to the vet and dependents. Between Medicare and TFL I only pay 17$ copay for 30 days supply of xenaziby normzach - Huntington's Disease Support Center
My reading of the VA schedule, the lead in para "§4.124a Schedule of ratings—neurological conditions and convulsive disorders. "With the exceptions noted, disability from the following diseases and their residuals may be rated from 10 percent to 100 percent in proportion to the impairment of motor, sensory, or mental function. Consider especially psychotic manifestations, comby normzach - Huntington's Disease Support Center
Lizzieann Google Veterans administration huntingtons disease should get you there - the benefits page will have the schedule of ratings 4.124a - para 8105 has Huntington's. don't know what happened with posting the link - must be this grey headed old man good luck Fredby normzach - Huntington's Disease Support Center
VA is expanding its Home Based Primary Care program for home bound veterans. Worth the effort for vets to check with a service officer assigned to their local VFW, American Legion, DAV. Really good news is that it looks like pHDs who are vets and in the advanced stage of HD qualify for 100% disability. Am chasing this to ground with Linda’s VA case manager and the service officer at the lby normzach - Huntington's Disease Support Center
Ran across this the other day - a lesson for care givers even those, like me, with little patience Fred Lothropby normzach - Huntington's Disease Support Center
what is interesting about this thread is the silence from Lundbeck, particularly in light of Howard's 26 April post. Maybe they don't just care about the community's percept.by normzach - Huntington's Disease Support Center
If anyone going to the convention and wants a something to discuss – check out the HDSA publications order page and the list of information, some as current as 1992 and 1991, the care givers packet is dated 1988, for which they charge a fee plus shipping costs. For example, they are charging $12.50 for The Physicians Guide (IMHO the most pertinent pub they offer), plus shipping. If you want toby normzach - Huntington's Disease Support Center
Good reference for those trying speech therapy Good reference to pass on to your medical support folksby normzach - Huntington's Disease Support Center
Great. There is always the ten percent that don't get the word. It should work more better now everyone is on the same sheet of music. Have a good oneby normzach - Huntington's Disease Support Center
Just took part in the latest fiasco, wrong word but you know what I mean, concerning Lundbeck and one of it's specialty pharmacies about the subject of the day - Xenazine. Ms. America has been using Xenazine since Apr 09 with good results. The Baltimore HD Research Center at John Hopkins has been prescribing the med, 30 days per Rx w/3 refills. Due to holidays, schedules and what have you, thby normzach - Huntington's Disease Support Center
Interesting, I notice the price increase came with a new Rx from Linda's primary care provider, not John Hopkins as was the case. Nah, Lundbeck would not let their supplier do that, would they?by normzach - Huntington's Disease Support Center
Interesting, I notice the price increase came with a new Rx from Linda's primary care provider, not John Hopkins as was the case. Nah, Lundbeck would not let their supplier do that, would they?by normzach - Huntington's Disease Support Center
Hey folks, Our Xenazine bill for 60 25mg pills, 30 day supply, just jumped to 6,166.88$, 88 cents???, or 102.78133$ and change, per pill. They must have added another layer/cost center in getting the med from manufacturer to PhD, I counted six different entities on the paper work/shipping docs.by normzach - Huntington's Disease Support Center
Marsha, You got my vote to be Commissioner of the Food Drug Administration. pHDs deserve a strong voice as in a good PHD to find a better way of doing something, what ever that is.by normzach - Huntington's Disease Support Center
put new batteries in the calculator - monthly is usually 5800/60=96 and change per 25mg pill, closer to Howard's calculations. found an old article discussing tetrabenazine - seems it has been used for treatment of chorea in several diseases for years throughout the world for some time. FDA put it on fast approval fast track in 2004, with approval for use in HD in 2008 (I think) in the US.by normzach - Huntington's Disease Support Center
Good question Howard. Lundbeck, got your ears on?by normzach - Huntington's Disease Support Center
Xenazine costly? Over priced, $28 and change per pill of a drug that has been around for decades? Nah. A socially responsible company, like Lundbeck, would never take advantage of small population like the PhD community, right? My MS. America has been on xenazine, 25mg 2xday since April 2009. Not saying the drug is not helping, but that adds up to well over a quarter of a million dollars from govby normzach - Huntington's Disease Support Center
Does anyone have experience with Coursera and their free online course offerings? I would like to be on the same page as the high school AP science students we give our HD pitch to, so thinking about signing up for Useful Genetics, taught by Prof Rosemary Rosenfield, University of British Columbia. From the south of Maryland,Thanks Fred Lothropby normzach - Huntington's Disease Support Center
Beth, Contact me and I will pass on your name and contact to the LSP who worked with Linda looking at assistive communication devices. see my post to this forum on the work she did. Fred Lothrop normzach@verizon.netby normzach - Huntington's Disease Support Center
Linda, aged 74, in the late stages Huntington’s Disease recently worked with a language speech pathologist at the local hospital. Attention was given to exploring assistive communications devices to facilitate communications with her care givers. After some research, TalkTablet from GUS Communications Devices was tried. We found: TalkTablet is easy to program. A Linda page with buttons to aby normzach - Huntington's Disease Support Center
Is the forum being spam'ed by comb2, nanik, huyua and famey?by normzach - Huntington's Disease Support Center
What a remarkable person. Kristen is my nomination for Huntington's Disease person of the year. [url=http://www.tedxteen.com/talks/tedxteen-2012/124-kristen-powers-the-innerkid-philosophy Fred Lothropby normzach - Huntington's Disease Support Center
Usually we are the first in line to help, give to, particpate and interact within the community. But, who is the pharmaceutical company; what is the collected information to be used for; who is moderating the new forum; why a new forum when there is HUNT-DIS, the Light House and several others that can be monitored for free? Always leery of blind data collection schemes.by normzach - Huntington's Disease Support Center
Am on a mailing list from Lundbeck, "Chorea Matters". Their last note contained advice and an excellent short video about chorea. Was unable to copy the url and/or the Lundbeck post into this note, however you should be able to get to it via their web page www.ChoreaMatters.com and look for the reference bulletin CNS149R2. Maybe someone smarter that I can get the note and videby normzach - Huntington's Disease Support Center
I shied away from this out concerns of being exploited by marketing concerns and the lack of full disclosure. Fred Lothropby normzach - Huntington's Disease Support Center
Great news. Will follow-up and gather more info to provide the folks at John Hopkins so they can advise the pHDs they work with. Suggest all provide this type of information to their support goups, research centers, social organizations and national associations so they can better help other pHDs. In the words of a grumpy old man from the south of Maryland "information is good, moreby normzach - Huntington's Disease Support Center
Pam, Here is the response from medicalservicedogs, inc. I may be a cynic, but I find the response typical of the lack of understanding by "support/service" activies and organizations of the interlaced issues faced by pHDs. No answer to the question about experience with service dogs and HD. So, by default, they don't. Think I will chase this one a bit more, it has been a while. Maby normzach - Huntington's Disease Support Center
don't know the answer Pam. Asked the question of . Will let you know if I get a response. Fredby normzach - Huntington's Disease Support Center
Over the years I have talked to several people in the business of raising and training service dogs/animals about the feasibility of getting one for Linda. Once we get through "this is Huntington's Disease", it is clear the many facets of pHD, it's unpredictable and individualized progression would make extremely difficult to identify what to train the animal for, movement, speech iby normzach - Huntington's Disease Support Center
Howard, Patty and Nila -- Thanks, appreciae the information Fredby normzach - Huntington's Disease Support Center