Hi, I had the same thing happen to me a couple of years ago, when I was not ready to come out of the closet! In fact, I was looking for a job then. My present account doesn't show my name at all -- I only use "tellie." If you are concerned, you might have to delete those posts that are showing up. Try to save them in a file on your computer, so you can come back to your posts later.by tellie1 - Huntington's Disease Support Center
Hi Wendy, I'm in the early stages, and the only chorea-like thing that I have is tension in my tongue and a kind of muscle stiffening in my upper lip. These things get better when I take creatine, and seem to get worse when I don't. tellieby tellie1 - Huntington's Disease Support Center
Hi Barb, I think they're on vacation. Hope they're getting some rest and fun! tellieby tellie1 - Huntington's Disease Support Center
Hi Peggy, I tested positive a few years ago (CAG 42), and don't regret knowing. I just started showing symptoms a few months ago. The earliest symptoms for me were clumsiness, slurring my speech, occasionally losing my temper, my mind going blank. I was tested at 50, now I'm 58, and knowing for the past few years has been a blessing (in disguise). I was able to tell my loved ones, get theby tellie1 - Huntington's Disease Support Center
Hi, I went for my Predict annual exam this week, and they canceled the spinal tap portion. The two people before me both got serious headaches, and it was probably because they had taken ibuprofen. I had taken it, too, and they canceled it for me. (They had told us not to take aspirin, but didn't rule out ibuprofen). In its place, I got to do a PET scan, which was alot more fun! So, forby tellie1 - Huntington's Disease Support Center
Hi Gabbygirl, Thanks for asking! At this point, I still don't have medicaid -- just the scheduled disability in December, and $275 SSI starting tomorrow. The person I have had to speak to numerous times is very difficult for me to understand -- heavy accent, keeps repeating the same phrase that I can't understand over and over. I did apply a third time, just for medical. She apparently waby tellie1 - Huntington's Disease Support Center
Hi Gabby, I live in Oak Park, right outside Chicago, and go the Dr. Shannon at Rush. She's excellent, and up-to-date on all the latest HD news and research. They have a creatine study that I will be starting in September. I can give you contact info for that if you like. Is the stem cell thing for HD? tellieby tellie1 - Huntington's Disease Support Center
Hi Gabby, Thank for reminding me -- I don't have Medicaid set up yet -- there was a number I was supposed to call after getting the word on getting disability. I'll call them tomorrow. I am planning on continuing to work 15 hours a week. I teach music to Alzheimer's patients at a retirement home, and I've lost track of residents a few times. So, I never know when the job will end! Yby tellie1 - Huntington's Disease Support Center
Hi Gabby, Yes, I now have two accounts on the "My Social Security" website that shows that I get "Social Security Disability" and"SSI." The larger one ($1,282.00) won't start until December, because of the five-month waiting period. The smaller one, ($275.00) will start on August 1. This is in addition to the amount I make at my part-time job, which can continuby tellie1 - Huntington's Disease Support Center
Thanks, Eve! Tellieby tellie1 - Huntington's Disease Support Center
Hi Gabby, Just wanted to let you know that I heard yesterday (by phone call) and today (by letter) that I'M APPROVED FOR DISABILITY!!! After getting off track for a few days, they finally did it! I first applied in the middle of May, so it took 3 months for me to get the word. They still need to look at my pay stubs from my part time job, but it appears that I will start getting paid eaby tellie1 - Huntington's Disease Support Center
Here's a link to a short video about the spinal tap:by tellie1 - Huntington's Disease Support Center
Hi Gabbygirl, Thanks again for your kind thoughts! Did you first get the news that you had successfully gotten SSI by snail mail, the website, or some other method? tellieby tellie1 - Huntington's Disease Support Center
Thanks for sharing your (painful) experience, Tenille. I decided to do it -- it will be at the end of July. I love coffee, so I'll be sure to have some around during and after! At the University of Iowa, it will be done by a team that specializes in spinal taps. It really is the same technique that they will be using for gene silencing in the (near) future. tellieby tellie1 - Huntington's Disease Support Center
Hi Gabbi, As it turns out, they didn't put my application in the "fast track" at the local office, and that's why we haven't heard for such a long time. Finally, they gave me a phone number in Springfield, of one of the adjudicators, and that person connected me with the person who deals with "Compassionate Allowance" cases. Now the wheels are in motion, and they have alrby tellie1 - Huntington's Disease Support Center
Hi Gabbi, How are you doing? Are those checks rolling in? I finally called the state office, was on hold for an hour. Finally, when I asked for and update on my application, they ended the conversation, because apparently I didn't answer the "Identification Questions" correctly. I CAN'T BELIEVE IT!! The questions were my ss #, home address, phone number, place and date of birth,by tellie1 - Huntington's Disease Support Center
Hi Nancy, I haven't been assigned a case worker yet, so I guess I should call the Springfield office. The person who handles disability at the neurologist told me that they haven't received any paper work from SSI. I didn't go in person -- all of my dealings have been via email or phone. On the positive side, I told my bosses at work about my application, and they agreed to a maby tellie1 - Huntington's Disease Support Center
Hi Gabbigirl, Thanks for your response! I had my "official" scheduled interview with SSI on Tuesday last week. They never gave me a function report to complete, but my social worker did. I was prepared to answer those questions, but all they asked were financial things, like about our cars, income, bank account. So, on the advice of the Social Worker, I mailed those function repoby tellie1 - Huntington's Disease Support Center
Hi Gabbigirl, Did you ever have to answer the "function report" questions, that Phil Hardt's info was answering? Or did you have a more general "Disability Report," that included doctors, etc? Tellieby tellie1 - Huntington's Disease Support Center
Good Job on the crap, Steve!by tellie1 - Huntington's Disease Support Center
Hi Nalo, Maybe she'd benefit from an antidepressant. I take celexa, and it helps a lot. tellieby tellie1 - Huntington's Disease Support Center
Hi Gabbigirl, I'm glad you got thing going! A check is always welcome! I did see a neurologist -- it was her suggestion to apply for disability. She will submit a letter, but not until asked by SSDI, apparently. My interview is scheduled for June 18, but who knows if I'm still in the running? Thanks, tellieby tellie1 - Huntington's Disease Support Center
Well, here is one example. (By the way, I had the DNA test a few years back, and tested positive at CAG 42.) This past Thanksgiving, we were all at my mother's house. It was my father who had HD, and he is no longer with us. I have two younger brothers (neither has been tested) and we were all going to be at Mom's house for the first time in a long time. She asked if we'd like to have a pby tellie1 - Huntington's Disease Support Center
Hi Eve, Thanks for your response. Are you planning on having the spinal tap? tellieby tellie1 - Huntington's Disease Support Center
I have this too - we call it "wishful thinking!" tellieby tellie1 - Huntington's Disease Support Center
Hi Gabbi, It's going to take a while -- since February, I've been making more than the minimum at my little job, so hopefully they will make it "as of June 1," which means I won't get any retroactive pay. The last time I spoke with the SSI lady, she was pretty negative, saying that I would probably be denied. I did draft a letter to my employer, though, telling them about my applicatby tellie1 - Huntington's Disease Support Center
Hi, I participate in the Predict HD Study at the University of Iowa every year. This year, they will be adding a spinal tap, and maybe a Pet scan to my menu of fun. Have any of you had experience with either of these tests, especially regarding HD and the Predict Study? tellieby tellie1 - Huntington's Disease Support Center
Hi Gabbigirl, The social worker I'm working with said that applying for Medicaid is a separate thing, done through the Dept. of Human Resources. I'm in Illinois, but I think it's probably the same there. If you have financial need, you should be able to get it. If not, there are some spend-down options, apparently. Medicare, the other thing, comes two years after getting SSDI. I think yby tellie1 - Huntington's Disease Support Center
Hi Gabbigirl, Thanks again for your inspirational words! I got all riled up and ready to call, then, what do you know, it's a weekend! I will call tomorrow, though, and demand satisfaction! tellieby tellie1 - Huntington's Disease Support Center
Hi, I just spoke with the SSDI agent today. They did schedule a phone interview in the middle of June, so it will take a while. We are approaching it from the poverty-side. We have not had health insurance for many years, and have no savings or assets (except a house we inherited). So, I'm in a hurry to get Medicaid, since we are "self-pay." Oh well, I can tell the other side ofby tellie1 - Huntington's Disease Support Center