I'm sorry to hear that. Testing is one of the most stressful events I have experienced. I can't imagine what you are feeling right now. Thinking of you!by bluedaisy - Huntington's Disease Support Center
What a blessing!by bluedaisy - Huntington's Disease Support Center
I've been so down in the dumps lately: I just thought a little positve news would be good to post as well: My dad (HD positive and symptomatic for many years): is smoke free for 2 yrs now; walking 2 miles every day; and has lost the extra weight that has gained since retiring early due to HD (eating healthy: not the typical weight loss due to chorea...). He is peaceful: He has taken HD and turby bluedaisy - Huntington's Disease Support Center
Salamandah, just wanted to let you: I live in Michigan and the facebook poster for this family is all my "friends" pages.... it is making news around the nation! Praying for the family and that the littles girls will be found.by bluedaisy - Huntington's Disease Support Center
Not sure exactly what happened. I don't need to know either. I just want to say thank you Barb for taking the time to listen and be here on this forum. Take care and do what is best and healthy for you! I'm still new here but value the freindships people offer here.by bluedaisy - Huntington's Disease Support Center
I've heard many different answers to this; Symptomatic is when a medical professional can detect motor decline. However, research states that psychological symptoms can occur up to a decade before any motor symptoms can be detected.... most doctors don't label HD sympomatic based behavioral and psychological symptoms. Some say that the person with HD symptoms are the last to "see it&qby bluedaisy - Huntington's Disease Support Center
Forgive me if this has already been posted, but we really need to urge our senators to co-sponsor this bill. Passing this bill will mean that the criteria will change for HD and recieving disability. Right now disability is based on physical and doesn't account for the cognitive and behavioral effects of HD. Second, it would waive the 2yr waiting period for medicare after recieving benefitby bluedaisy - Huntington's Disease Support Center
Yes, there is a possibility he may not have the right to make that decision. But, the judge said as of right now he needs to make a decision, even though in two months he may lose his right to make that same decision. He is involved in neglect situation, stemming from allegations stated by my sis (his) wife. I am the one who called the police. Result: he blames me for his current position. I wasby bluedaisy - Huntington's Disease Support Center
Thank you for the number. I will will def. check into it.by bluedaisy - Huntington's Disease Support Center
Thanks everyone for your thoughts. Klivin, you may be right. I am trying to attain the guardianship, but the dad is dead set against me. We were told both parents have to agree. I guess he would rather foster care than me.by bluedaisy - Huntington's Disease Support Center
I hate this disease. I am not dealing with it today. It is completely unfair and I am taking this day to let myself be mad... Aside from the terrible custody situation.... my sister was just dropped from her medicad insurance! That means absolutely no health coverage for her.... she'd on about 10 different scripts and has routine doctor visits.... what is she going to do now????? We have no moby bluedaisy - Huntington's Disease Support Center
Wow, tough situation. And no easy answer. Somehow I would try to manage the conversation. Sometimes we wait until it's too late. I would try try to talk to him before it becomes an issue for him to really see that there are issues... Maybe gather a close friend or family member to help you tackkle this issue? I worry about my younger brother. Somedays he seems he may have symptoms. Hard to telby bluedaisy - Huntington's Disease Support Center
I get it. Painful for both of you. She probably just needs sometime to accept the diagnosis??? When everyone knows, it becomes more real. Worrying about being labeled, treated differently, cut off, etc.... That being said, it can't become only your responsibility. Maybe start suggesting some support groups; getting involved in the hd community sorta empowered by dad to "own" his conditiby bluedaisy - Huntington's Disease Support Center
I have never heard that. I know in rare circumstances that you can be the first in a family line to get it, ie. a new mutation stemming from intermediate CAG counts (29-36..). According to my test results, the genetic company states that I won't pass on the gene because I did not inherit it. Nothing about skipping generations. I would evaluate your source of information; unfortunately manby bluedaisy - Huntington's Disease Support Center
The judge extended the court involvement (added a new date until July). The judge was quite stern and strongly suggested that my sister and her ex-husband come up with a person they want to be a guardian. Praying that everything falls into place. It's so sad; hd is taking so much. She should be able to see her kids more than an hour a week. Does anyone out there have/had a situation where chiby bluedaisy - Huntington's Disease Support Center
I think what you are feeling is understandable. My sister has hd and I consider her my friend. I find it frustrating in the same ways you describe. It hurts because even though our friend/sister is still with us: we are already losing them. Slow and painful. It is so tragic. I don't have an answer, but I find that I can't do everything I used to with her. But I still want to be there for her. Unfby bluedaisy - Huntington's Disease Support Center
We have a big day coming this week. My sis will be going to court to have her family case reviewed. Her children were temp. removed and she seems to think that her care team (they vist her; counselor, parenting sessions, etc...) are telling her that she must get her own apartment so she can get her kids back. My mom tried to explain to the team that (sis) that she can't live on her own, but theyby bluedaisy - Huntington's Disease Support Center
Awesome! Have a blessed time! I hope to go next yearby bluedaisy - Huntington's Disease Support Center
Hello! I'm not sure if this helps. I understand that CAG counts further expanding from generation to generation are more common when passed from a male to child. Less common is further expansion when passed from female to child. I think we all have heard of families that have defied this rule of "common" occurences. My dad passed on the HD mutation to my sister and it expanded further aby bluedaisy - Huntington's Disease Support Center
Thank you for all the advice! I will be getting on the phone tomorrow and start making some calls. I am just upset right now because my mom seems mad at me for this, like it's a bother to her. We don't get along and she is really taking my sisters situation hard. (HD came from my dad's side of the family). I think she is depressed and she doesn't handle my sister rationally. And my sister is notby bluedaisy - Huntington's Disease Support Center
Hello! Nice to have you here! I really like your name: unique and interesting! Message me if you want to talk; we are about the same age...by bluedaisy - Huntington's Disease Support Center
My dad has been on disability for 4 years and he walks daily. He has a route outside(public) for nice weather and a route around the mall(public) for bad weather. I believe that his dedication to walking has helped him keep up his mental health and physical health. He is the only family member (in ours) that has made this efffort and improved/slowed progession on some of his HD symptoms. I doby bluedaisy - Huntington's Disease Support Center
I recently took my sister to the dentist and it turns out she has 2 abscess wisdom teeth that are virtually rotted out and need to be extracted. A few weeks back Marsha suggested a dental check when I posted a concern about my sister's recent decline. (Thank you Marsha!) My problem is that my sister does not have any dental insurance and she has no money coming in. (She was denied for disabiliby bluedaisy - Huntington's Disease Support Center
Awesome! Maybe the error was a good thing... now, it sounds like, it brought more media coverage!by bluedaisy - Huntington's Disease Support Center
fhcutie546, Thank you for taking the time to express yourself; it is healing. Reading your post was like I was reading my own terrors. I accepted my mortality many years ago. My baby boy died when I was 22 yrs old. I haven't feared death since. But then HD came into my life. And this disease is more than about death. It's about be a prisoner inside your own mind. Having your brain play tricksby bluedaisy - Huntington's Disease Support Center
Oh, thanks so much! I will check it out!by bluedaisy - Huntington's Disease Support Center
Oh thank you! Should I just look at the michigan.gov website? Or just search? If they are readily available online why do so many people go to attorneys? Thanks for the reply!by bluedaisy - Huntington's Disease Support Center
Awesome! Good luck!by bluedaisy - Huntington's Disease Support Center
First, I hope everyone is having a nice holiday (The weather is great here in MI)! When I went with my sister to her neuro who actually specializes in movement disorders (her reg. neuro seems clueless when it comes to HD ), he told me that it is the responsibility of the family to make sure she gets a living will made before she is unable to. I know she needs one, ecspecially as far as whoby bluedaisy - Huntington's Disease Support Center