Welcome & Thank You for getting the word out on HD! Within the last year 3 of my family members have been diagnosed with HD (I'm at risk W/ 3 kids) Do you have a tour schedule so we can get out and support you and your music?by De - Huntington's Disease Support Center
Intersteller - I can relate to you. I also have 2 sisters and between us we have 8 kids - All at risk. My mom was diagnosed with HD a year & a half ago. It seems like all I get when I bring up HD to friends is "Are you going to get tested?" they don't relize what a loaded question that is. I know I'll get tested someday - but is knowing that my kids are at greater risk going to makeby De - Huntington's Disease Support Center
Bo, What a wonderful story! I am so glad that you don't have the gene. Don't harbor bad feelings about how you felt about your dad. Given your circumstances anybody would feel the same. I'm an at-risker(who will test someday) and HD is not an easy disease to deal with or understand. Even knowing my mom has this disease it's still really hard to be around her. Thanks for sharing your story - youby De - Huntington's Disease Support Center
I jokingly tell my sister if she tests neg & I test pos - she'll have to be my caregiver - I'm not sure which is worse. No matter what, we're all in this together for the long haul.by De - Huntington's Disease Support Center
Michelle, I can't imagine what your going through. I'm so happy for your negative result but I feel bad for telling you to celebrate. I've been "At Risk" for 1 1/2 yrs & though I'm much older than you (40), I have been able to relate to your journey, having a mom with HD, 2 at risk sisters & 3 at risk children. I've thought about testing also, but never considered a negativeby De - Huntington's Disease Support Center
I'm so happy for you & your family! Now you don't have to worry about your kids having the gene, what a great feeling! Congratulations- Now go out and celebrate! Cheers, Deby De - Huntington's Disease Support Center
Kev- 2/2 my mom and her sister both positive rec'd the gene from their mom 1/1 my cousin who tested was positive 5 others (including me) who have not yet tested Everybody who has tested so far 3/3 100% in my family has been positive. Deby De - Huntington's Disease Support Center
My prayers are with you and your family during this timeby De - Huntington's Disease Support Center
Ron, Though I don't have any words of wisdom for you - know that you are in my thoughts and prayers. We are one big extended HD family. Take Care, Deby De - Huntington's Disease Support Center
Congrats & Thank You, Laura & Family!! I'd like to get involved with a Detroit Area Fundraiser like this! Deby De - Huntington's Disease Support Center
Bike riding helps improve balance.by De - Huntington's Disease Support Center
batesm, As my mom anxiously awaits discharge from the NH, we are looking into an agency (that another family member has used from a church paper) that hooks up women from Poland who are looking for room and board and will take care of your family member in your home (in my case my mom's condo) 24/7. The agency charges $600/mo & I think it's done under the table. The live-in person will cook,by De - Huntington's Disease Support Center
Hi! I also have 3 kids and am dealing with my mom W/similar symptoms. My mom was living on her own in a condo with stairs until four weeks ago. She fell down the stairs, crawled up them and sat up in a chair throughout the night - she couldn't move. The next day she tried to get up to go to the bathroom and fell to the ground where she laid for a few hours untill my sister found her. She is nowby De - Huntington's Disease Support Center
After living at-risk for 1 1/2 years I know I will test sometime between now and when my 8 y o son and 11 y o twin boys start dating. Probably sooner than I'd like to admit. I know this is a very personal decision but how/when did you know testing was right for you? Do you regret getting tested? Sometimes I feel like I'd be more motivated to keep up with my exercise and supplements if I knew I haby De - Huntington's Disease Support Center
Happy Belated Birthday Barb! You are so awesome and an inspiration to us all! You definitely don't let HD get you down, I'm glad to hear that you are living a quality life and doing things you enjoy. If you want to pick me up in Detroit, I'll ride to Pittsburgh with you (It is Pittsburgh, Right?) We could do an annual bike-a-thon and raise $ for HD! I've been thinking of things I want to do in myby De - Huntington's Disease Support Center
I've been thinking about Andersmar too! Please let us know if you are out there! All my prayers and thoughts are with you. Deby De - Huntington's Disease Support Center
You're in my thoughts and prayers! Thanks for being so brave & letting us go on this journey with you. Someday before my kids start dating, I'll test too. Praying for negative results for you and your family, but you will be ok no matter what. It is what it is - it's just a matter of knowing. You will still wake up tomorrow and get your kids ready for soccer/school, etc, and continue doing thby De - Huntington's Disease Support Center
My 66 year old HD mom will be released from the hospital tomorrow from a fall - back and head injury. I am considering bringing her home to my house (hubby & 3 boys) with some outside help. I don't work and my 2 sisters live within 2 miles. Yesterday, my mom pulled herself from bed to chair and walked with a walker in the hospital room. The psychiatrist deemed her unable to make her own medicby De - Huntington's Disease Support Center
I don't post very often but I want to thank all the PHD's out there on this forum such as Barb, Dusty, Eudell, Alice, Will, etc. You all are very brave and give me/us a unique perspective of this disease. As an at risker and caregiver to my HD mom, I cherish your insight and education on what you go through on a daily basis with HD. I know it's not easy but I really do appreciate all that you givby De - Huntington's Disease Support Center
So awesome to hear news like this! I'm 40 & have been at-risk for a year. Wow, 31 years of being at-risk. Congratulations for being so brave . . . now you can live the rest of your life without second guessing yourself! Yes, we will beat this & soon!by De - Huntington's Disease Support Center
Though I'm somewhat new to caregiving for my HD mom I find it most difficult that she doesn't see it at all! I'm learning that this is not so important in the realm of things but it would explain alot to her (why she'll never drive again, etc.) if she would accept it. If positive I will never deny it! Bless you Barb, you don't seem to have problems accepting HD - maybe everybody is just differentby De - Huntington's Disease Support Center
Hi J! Happy to read your post. You and Will are inspirational to us all. I am a 40 year old at-risk(for a year) mom with 3 boys(11,11 and almost 8). While I do jog, lift weights and bike - people like you and Will give me that kick in the butt and make me want to continue to be physical (maybe even sign up for a 10K run - which is nothing to you) and take my supplements daily. Also, it gives mby De - Huntington's Disease Support Center
My HD mom who lives by herself and doesn't drive calls me a minimum of 10 times before each of her (doctor,dentist, etc.) appointments. I'm not sure if her short term memory is fading (from HD or meds) or she wants to be sure that I don't forget. It drives me a bit crazy. Hang in there!by De - Huntington's Disease Support Center
Hi Andreea - my HD mom is cold all the time. She was wearing a winter coat when it was 70 degrees the other day. I'm not sure if it's an HD symptom or she doesn't have enough fat on her 5'9 body to keep her warm - she is extremely skinny. Deby De - Huntington's Disease Support Center
MRO, That's how I understood it. I think it had something to do with classifying special needs. This is a vicious circle isn't it? We can't put familial history of HD on any papers,in order to get insurance- but when it comes our time to use our insurance our children won't be able to get coverage. I guess this is why we need change (GINA ACT) in our country! I hope it works! Deby De - Huntington's Disease Support Center
HI! I was reading your posts MIchelle and insurance sucks! The one and only time that I went to a HD support meeting in Michigan - there was an insuarance agent for HD families. Even though you could obtain insurance there was no promise that their rules wouldn't change and you could be dropped. Total descrimination! At least your country has that superannuation - probably very basic but still ahby De - Huntington's Disease Support Center
I haven't been tested yet - probably sometime in the future when my kids are a bit older. Let us know how things go! You'll be in my thoughts. Good Luck you brave woman!by De - Huntington's Disease Support Center
Iv2 If his father died of HD he should know the possibilities are there for him as well. If not, educate him first about what HD is and explain about testing. It's then totally up to him to be tested. As an at risker I know there is no treatment so why test? I choose not to be tested but do supplements and exercise and try to eat and sleep well. Be careful about approcaching him with a group atby De - Huntington's Disease Support Center
Hi Alan, If you go on the Lighthouse site and click on potential agents and look up SSRI. Zoloft is a good drug for behavioral/depression issues. It also increases BDNF levels, which protect our brains. It's worth mentioning to your Dr. I don't think I would mention anything to an employer until there are obvious symptoms and it is affecting your ability to do your job. Deby De - Huntington's Disease Support Center
Hey Alan, I'm a 40 yo female who is at risk but chooses not to be tested at this point - I think we all go through checking ourselve for symptoms everyday. Sounds like your on top of everything. Your symptoms maybe stress related. Are you planning on paying for the test? Make sure if you go through your insurance company that they don't drop you for positive results. Good Luck! Deby De - Huntington's Disease Support Center