To tell the truth, trehalose has been one of those things that I only take in spurts - like when I have the pills. I found it difficult to take the ground stuff from Brooklyn Premium, even though I have a sugar bowl full of it most times. Right now, I just take one tablet per day (100 mg). The most important things I take are Blueberry IQ (1-2 tablets), Concret Creatine (1 tablet per day), Fishby tellie1 - Huntington's Disease Support Center
Here is a link to Teacher Tablets, which have 100 mg. Trehalose each. I do like taking it in capsule form rather than powder, and it seems to help me remember things! Judy/tellieby tellie1 - Huntington's Disease Support Center
Well, here's an update on our Plus Loan TPD application - after a year and a half, it was rejected! I'm not sure what our next step will be - if any. We just received a bill for $63,000 from the U.S. Department of Education, according to the bill we received. I went to the Nelnet website, and found "REJECTED" on our application. I would follow your advice, and ask Jane Kogan, buby tellie1 - Huntington's Disease Support Center
Hi, Yesterday, I sent an email to the address provided on the ClinicalTrials.gov website, and actually reached a real person. The person I contacted was Lori Cooper (LCooper@isisph.com). Here is her response; Thank you for reaching out. We are planning for a randomized placebo-controlled Phase 1/2a clinical study to evaluate the safety and tolerability of ISIS-HTTRx in patients in the earlby tellie1 - Huntington's Disease Support Center
Hi Barb, Yes, I understand your frustration! As a person who has participated in several clinical trials and research studies, I was really hoping to be considered for the Isis trial. I am 60 years old, with a CAG of 42, and don't really have any symptoms yet (I think). So, if they were looking for a wide variety of subjects, why not you and me?!?! But I live near Chicago, so if distance iby tellie1 - Huntington's Disease Support Center
Hi, Illinois is an approved state, and they are opening a dispensary in our little suburb of Chicago. HD isn't on the list of approved diseased, though! I'd try it if it were! Judyby tellie1 - Huntington's Disease Support Center
Feel better soon, Marsha! Judyby tellie1 - Huntington's Disease Support Center
Congratulations, Will! Great job! I think you're wise to keep up your supplements -- they sure work for you! I'm going to continue taking creatine, and also CoQ10, because I still have no symptoms at 60 years old. Judyby tellie1 - Huntington's Disease Support Center
Thanks for the great write-up, Marsha. And thanks for inspiring us to stay healthy and positive! Judy Galasekby tellie1 - Huntington's Disease Support Center
Thanks for the great article, Will! My dad, who was the gene carrier in our family, died alone at home at the age of 65. He probably had a heart attack -- cancer was never an issue for him, either. Like you, he served our country as a U. S. Marine - and I remember he always had a great tan, never used sun-screen. I spend many hours in the sun, too, Barb, without sunscreen. I have a good tan! Aby tellie1 - Huntington's Disease Support Center
My immediate family has always been musical. I just wrote about it in my latest blog. My father, who was the HD carrier, was a wonderful singer. My mother, who is still living, is totally tone deaf! I think that music, like a good SSRI antidepressant, can lift the spirits of those with HD and their families. My tone deaf mom, though, is very talented in art, gardening, genealogy, and manyby tellie1 - Huntington's Disease Support Center
Here's some good news from our friend, Gene Veritas, just in case you haven't seen it, about upcoming gene silencing trials. Judyby tellie1 - Huntington's Disease Support Center
I take Celexa (Citalopram), which is an SSRI, with great success. I think it even helps cognition! Judyby tellie1 - Huntington's Disease Support Center
Thanks for sharing - but it is depressing, don't you think? Judyby tellie1 - Huntington's Disease Support Center
Welcome Sonshine Sandi, Thanks for your post! I'm glad you're able to keep working - they must know your limitations and adjust your job requirements as they/you need. I have been able to keep a part-time job, while being on disability. I also tested for the sake of my children, and with a CAG count of 42, late onset is common in our family. Neither of my children have been tested, and oneby tellie1 - Huntington's Disease Support Center
Hi Wayne, Thanks for sharing your supplement regime. Here are the ones that I take. Judy (tellie) Creatine - I recently started taking Con-Cret Creatine, at the recommendation of Will Brown. I bought mine from Amazon and Badass. Coconut Oil Capsules - Source Naturals - I buy from Vitamin Shoppe. At this time, I take 2 capsules daily. A full dose is 4 capsules, but I also use some coconuby tellie1 - Huntington's Disease Support Center
Congratulations to all of us new grandparents! Our first granddaughter was born on May 14, and her name is Morrighan Lorraine, weighing in at 8 pounds, 7 ounces. Here's to grandparenthood! Judyby tellie1 - Huntington's Disease Support Center
Thanks for letting us know, Will!! I'll give it a try, too! tellieby tellie1 - Huntington's Disease Support Center
I have been taking two teaspoons of creatine every morning for many years, too, and it does help. I'm going to continue to take it, even if it's not recommended on the Buzz. They are probably afraid of people taking too much and getting liver damage, or something. tellieby tellie1 - Huntington's Disease Support Center
Too bad the HD Buzz doesn't agree! tellieby tellie1 - Huntington's Disease Support Center
Hi Ranman, Thanks for the information. I'm glad that your loan for your daughter was discharged. I met with the social worker at my COE Neurology office, and she drafted a letter that I am to send to the loan company. I'll try that first, since she worked so hard on it! Then, if necessary, I'll contact Jane at HDSA and my congressman! Hopefully, the letter will do the trick. tellieby tellie1 - Huntington's Disease Support Center
Hi Howard, I just heard the same info from Jane Kogan, at HDSA. I have tried to online application for ObamaCare for two days, and it never lets me sign and complete it. Oy! tellieby tellie1 - Huntington's Disease Support Center
Hi, I was recently granted SSI Disability, for HD, and I have a question about Medicare. I went to my family doctor yesterday, and she said that I should have signed up for ObamaCare, since I have not had insurance for many years. The doctor was sure that there was no longer a waiting period for Medicare. Is this true? tellieby tellie1 - Huntington's Disease Support Center
I agree. Pioneer responded to my TPD question in a way that made no sense (to me, anyway). I was going to share it with my husband, to see if he understood it. tellieby tellie1 - Huntington's Disease Support Center
Thanks for your input. It is a tough question. I have an appointment to talk with the social worker at Rush - she's so helpful! I've collected all my check records from the last ten years, and she is going to help me write a letter, "stating that you are disabled with a progressive, neurodegenerative illness that causes ongoing financial hardship." tellieby tellie1 - Huntington's Disease Support Center
Hi, Hoping that someone might have some knowlege about this. We have $50,000 outstanding PLUS loans that we made for our daughter. I applied for a discharge, but was denied, because the loans were made in my husband's social security number, but I was the one who paid them. Now that I am disabled, we can't afford to pay them, but we were just denied a discharge. Has anyone out there gone thby tellie1 - Huntington's Disease Support Center
Hi, I go to Dr. Shannon at Rush. She's the one who helped me get tested years ago, and I recently was granted disability, with Dr. Shannon's help. tellieby tellie1 - Huntington's Disease Support Center
HAPPY THANKSGIVING TO EVERYONE!! tellieby tellie1 - Huntington's Disease Support Center
Hi, I'll be starting the CREST E study on December 6. I'm looking forward to it, as I have been in a couple of other studies already. tellieby tellie1 - Huntington's Disease Support Center
Congratulations, Mikee!! We just learned that our daughter is expecting too, in May, 2014. I tested positive at age fifty, with a CAG count of 42. I'm now fifty-nine, and looking forward to being a grandma! My daughter wasn't interested in testing, or in any of the latest technology, but the late onset in our family, with lower CAG counts, will give them plenty of time to get around to a cureby tellie1 - Huntington's Disease Support Center