Does anyone know of a Center Of Excellence near Omaha, NE?by mpeters - Huntington's Disease Support Center
I am not new to the world of HD. I took quite a long break from this site when my mother finally passed away at the end of 2007. I wanted tested then, but the only options in my area will test when a patient is symptomatic. I can't find resources around here that test with no symptoms. I'm in a place in my life where I'd like to plan my retirement and I certainly do not see the point if I'by mpeters - Huntington's Disease Support Center
Hi Clarence. I live in Omaha and used to have friends in Glenwood. Welcome to the board. You will find a lot of support here. I am at-risk and we've charted this back 7 or 8 generations. I watched my mother and other family members go through this. My sister is 42 and currently is at risk. I have no idea if she plans on testing or not. I'm 30 and am getting very close to the age mom was wby mpeters - Huntington's Disease Support Center
Thank you Eric and Shar. That info sounds great. HD and Autism are my big causes. There was a big autism walk last month. I would love to get awareness of HD out there. Would like any info you have Shar...I'm not worried about how quickly I get it...it's ok. Enjoy your weekend. Melissaby mpeters - Huntington's Disease Support Center
Everybody, Wow, it's been so long since I've posted on here. Things have been mostly quiet since mom passed away 17 months ago. We have since moved to Omaha. When we lived in OK, it was through this board that I found the support group down there. How do I find one here? I am not symptomatic yet, nor have I had the test done. However, I would like to make some things for the people afby mpeters - Huntington's Disease Support Center
Welcome Sally and Charley. While it's sad that we have to have a forum like this one, I'm thrilled we have it so we can finally meet people who "know" what we are talking about. I don't even know what page my mini profile is on anymore. Brief bio: My mother was the first in many generations to not only be diagnosed HD, but to refrain from committing suicide because of it. Sheby mpeters - Huntington's Disease Support Center
to everyone who listened, cared, gave advise and let me rant and rave in the months preceding mom's death til the present. I'm sorry I've been AWOL so long as I'm still dealing with mom's stuff. Also, I cut my hair...I know it's petty, but now I am her spitting image. It's kinda difficult looking in the mirror some days. Maybe I should send the pic to Eric. Anyway, thanks again. I'm tiptoby mpeters - Huntington's Disease Support Center
Welcome Jon and DH. I'm sure you'll like it on this board. A bunch of truly wonderful people connect here....it's the best place to be.by mpeters - Huntington's Disease Support Center
Peter and Heidi, WELCOME!! While I hate the fact that HD exists, I am thrilled that there is a community where we can all get together and support eachother, since we all understand first hand what HD is like. It's good to have you guys on board! Melissaby mpeters - Huntington's Disease Support Center
good point. Dead is dead, but people don't tend to understand the complications part. I tried explaining that it kills you, but they don't understand the suffering part with it. They seem to "get it" better if I say that it doesn't kill you, but the complications do after YEARS and YEARS of suffering!by mpeters - Huntington's Disease Support Center
Remember what I said about failing science??? That would be why. I think I understand what you said. This is another reason that I should donate money to find a cure and not do it myself. I'd probably come up with another cause instead of a cure. lolby mpeters - Huntington's Disease Support Center
Thought I'd give my two cents on this one. I get the whole idea of flipping the coin and how one child's pos/neg wouldn't affect another. That being said, sometimes it seems as if for GENERATIONS, the + side of the coin must have weighed more than the - side. My mother had 6 siblings. One died in their teens from JHD. Seems people keep telling me that JHD comes from the father's side, bby mpeters - Huntington's Disease Support Center
Barb, glad that you enjoyed the quilting newsletters. I'll be posting my newest finished quilt up there when I have the pics ready. Finally finished the pastor's wife's quilt. It's a cancer quilt. My name over there is mpeters1200 so if you see it, you know its me. The chat is fun too. I just never seem to be there at the right time. Mby mpeters - Huntington's Disease Support Center
Hey db!! Hope all is good with you too. We had a really rough year losing mil so suddenly and then mom at Christmas. It was amazing that she lasted as long as she did. We moved back to where the kids were born. It's like being home again. We are currently staying, until the house is ready, with my mom's best friend and her family. These people have been a second family to me since Iby mpeters - Huntington's Disease Support Center
Just wanted to update you really fast in case you need the info for the mini info on us. We just moved back to Omaha, NE. I got here the day before yesterday with the boys and dh will be here in about 2 weeks with all our stuff. We wanted to move over the summer, but we knew mom wouldn't make it and we wanted to wait until she was gone and we didn't have the expense of traveling at short notby mpeters - Huntington's Disease Support Center
Just wanted to say a quick hi to Nicole and Gemma. Welcome girls!!by mpeters - Huntington's Disease Support Center
Whenever I have had to explain HD to lay people I always use what my dad used to say plus a bit more for shock value. He called it a COMBINATION of things from ALZ, PD, ALS and MS. Some people are still lost then, so I explain that the brain stops working almost like if it's being eaten by a cancer. Then I say: At least Cancer will kill you. HD doesn't. People don't die specifically fromby mpeters - Huntington's Disease Support Center
Bonnie, so good to meet you. I agree that your story is moving. My heart goes out to you and your family. Melissaby mpeters - Huntington's Disease Support Center
Welcome Erin!! You sure are in the right place. It must be tough to find out that you are at risk AFTER being married and having children. This is certainly the place to be to find the support you need. We all have a lovely community here and try to keep eachother upbeat, not sure about the giggly part, but definitely upbeat. I'm 28 by the way with 2 at risk siblings at 40 and 23. Betweby mpeters - Huntington's Disease Support Center
Dave, Perhaps we could pm about that?? I'm not necessarily against the idea...just have some questions. Melissaby mpeters - Huntington's Disease Support Center
Thanks Barb. My blog originally started as a copy mechanism to fight depression from the crap that seems to fall into my life. I've had a friend read bits and pieces of different entries and he says he thinks my kids are hysterical by some of the entries. I wish I could tell you when I posted about Tyler finding a toad and naming it Cracker. We live in the South and I about fell off my chaiby mpeters - Huntington's Disease Support Center
Hello all. I made it back from Illinois ok. I am copying and pasting some things for you. The first is a poem I included in a scrapbook making a photographic journey of her life from 1986-2006. I had already made one covering 1961-1983. The poem was in her room, in a drawer at the home for a long time. I thought it was VERY fitting to include in her services. The second, is a letter I wrby mpeters - Huntington's Disease Support Center
Dusty... I'm sorry about your friend. Having just lost mom not even 2 weeks ago, I understand the feelings. It may seem silly to say, as I know it was silly to hear, but I am glad her suffering is over.by mpeters - Huntington's Disease Support Center
Thank you everyone for your continued support! I had no idea there would be this many replies!! Thank you, your messages have meant a lot to me. I will be leaving here first thing Thursday morning to arrive back to my home town very late Thursday night. I will be picking up her urn on Friday and burying it Friday afternoon at my dad's feet. Her memorial service will be Saturday afternoon aby mpeters - Huntington's Disease Support Center
Thank you all. I spent 10 hours on the phone yesterday. I was truly happy I had more than one phone so I could keep one charging all the time! While I am sad at the loss.....I am grateful that she doesn't have to suffer any more. She weighed hardly a thing and I am glad that she can't hurt anymore. That being said, it doesn't really ease the pain I feel... It's hard to explain. I'll try toby mpeters - Huntington's Disease Support Center
As this letter reaches you, you may be with or have been with your family as it is the day after Christmas. We were with our family too as we spent the holiday with daughter Belynda and her family. After living with Huntington?s Chorea Disease for 30 years, my mother passed away peacefully this morning at 11:30 am. The last 10 years had been very difficult for her. She had completely lost tby mpeters - Huntington's Disease Support Center
I find myself slacking on my usual activities, work, chores, tv everything. I find myself sitting on the couch and then realizing 30 minutes has gone by and I have no idea if I did anything OTHER than sit on the couch. I jump when the phone rings, anticipating the news, but alas it's someone just checking on me. I've had discussions with my family and they seem to be a bit irritated that I Rby mpeters - Huntington's Disease Support Center
My aunt called this morning. Mother is down to 47 pounds. She is not taking in food at all and hasn't for 7 days. She has only drank twice for a total of 100 cc's during the last 7 days as well. She's tired and lethargic. She has developed a bed sore on the only part of her that has flesh left. Due to weight loss and food non-consumption she will probably never get rid of it. The last timeby mpeters - Huntington's Disease Support Center
Thank you both. It's been a tough week. I received in the mail today my first anniversary card for this year. It contained a story about the nursing home calling my aunt telling her that mom was unresponsive. I hadn't heard about this particular incident, but it had been happening a lot during the last 3 weeks. It also contained 3 recent pictures of mom. I know it's been two months sinceby mpeters - Huntington's Disease Support Center
Luckily, my father's family, which takes care of her, and my mother herself are Jehovah's Witnesses so the timing doesn't mean anything to them. My siblings and I have agreed that when mother dies we will hold off on the memorial service at least a month while we ready our finances for such a trip. My brother and sister in law are 3 hours from home, I am 14 and my sister is 1000miles more thanby mpeters - Huntington's Disease Support Center