Thanks Mike. I try. I think the key is in accepting the situation and modifying my expectations of him. He has started to help a little around the house, what he can. Pattyby patty c - Huntington's Disease Support Center
I haven't updated for a while. Our family has been doing fairly well, with my husband progressing slowly, though steadily in his HD symptoms. He has managed to keep his aggression under control, which has been the best measure for managing him safely with 2 kids at home. I had been working as a home care occupational therapist ever since his return to us. I felt the need to decrease myby patty c - Huntington's Disease Support Center
In answer to one of the original questions, yes, there are some findings during an autopsy which will point toward HD being the cause of your aunt's death. The physical and structural changes in the brain are much different for HD versus MS. With HD, you will see widening of the ventricles and shrinking of particular structures of the brain. These physical changes are much different from the cby patty c - Huntington's Disease Support Center
That is great news. It sounds like you are in good hands.by patty c - Huntington's Disease Support Center
As well you should, Marsha. Thanks for keeping the site as clean as you do!! Pattyby patty c - Huntington's Disease Support Center
It is hard to say, as each person with HD is different. Your best bet is to get to a neurologist who is familiar with HD. Do you have a local chapter of HDSA? Otherwise the national office might be able to point you toward a physician who knows HD. My husband takes Paxil, and has from the beginning. He is also on risperidone for aggression, xanax for anxiety and xenazine for chorea. Itby patty c - Huntington's Disease Support Center
I think I saw her at an education day held for the New England chapter several years ago. I agree, yoga taps into the mind/body/spirit connection. I would have a hard time getting my once very macho husband to practice yoga, unfortunately. I'm glad you are finding some ideas here, Jess. One day at a time. Patty Cby patty c - Huntington's Disease Support Center
Well said Mikee. Find some support of other families affected by HD, either a local support group, or through this online community. Rusty and I went to the national convention last year and were surrounded by many examples of families living positively through many stages of the disease. It gave me some hope that I have the strength to do this. Will is a great example of living positivby patty c - Huntington's Disease Support Center
My husband is up to 6mg daily of Risperidone. 3 in am, 3 in pm. He was on 4 for a long time, but then started to have breakthrough aggression. I think as long as the meds are controlling his symptoms without "snowing" him, it is a good thing. I would rather he be well controlled on medication than having meltdowns. All of the neuro affecting meds take about 2 weeks to stabiliby patty c - Huntington's Disease Support Center
C'mon Mikee, that's what calendars are for. I'd be lost without mine, and mine is just a middle aged mind. Smiles, Pattyby patty c - Huntington's Disease Support Center
Welcome to the forum. It is a very personal decision. A quote recently came up saying (paraphrase) ...When the stress created by not knowing is overcoming your ability to live and enjoy your life, then it is time to test. These days knowledge is power, and you can take that knowledge to be proactive in your lifestyle to hold off symptom onset as best as you can. Either that, or you can relievby patty c - Huntington's Disease Support Center
Actually, I think the Genetics non-discrimination act should protect you from being denied long term care or life insurance based on a parent's diagnosis. Look at the questions on the application. They can ask if you have a neuro condition, but I do not believe you are required to tell of your parent's diagnosis. (that would be a violation of their privacy rights) If you are not symptomatic,by patty c - Huntington's Disease Support Center
Welcome Jess. Your friends and church community will be great support if indeed your husband becomes symptomatic. You are fortunate to have them. My kids were 5 and 6 when their dad became symptomatic. It has definitely challenged me in many ways, but I think they are very resilient and doing well, despite the challenges that HD brings to our family. I hope you do not have any reasonby patty c - Huntington's Disease Support Center
Good luck Annekri. You seem to be in a better place mentally. Pattyby patty c - Huntington's Disease Support Center
Will, you can probably finish 50 miles before I could finish 5. Good luck!! Pattyby patty c - Huntington's Disease Support Center
Howard, your story is always inspiring. Your daughter is so fortunate to have you as an advocate. Whether to put a feeding tube in is a very personal decision. If we are ever faced with that decision, I would seriously consider what quality of life are we preserving at the time. In Howard's daughter's case, as in my husband's, yes HD limits their ability to get out and hold a job, or do sby patty c - Huntington's Disease Support Center
True true. My husband was already symptomatic, and the neurologist was pretty sure it was HD. He did not go through the counseling process, and we had the results within 2 weeks. As for his initial SSDI application, he was already mid process applying for SSDI with a friend's help, and having the neurologist include his documentation, changing the diagnosis to HD did the trick for us. He wasby patty c - Huntington's Disease Support Center
Hi Gabbi. Welcome to the forum. I can vouch for both Howard and Mike and many on here, we only want to support and help you. Howard's intentions are to make sure you explore the options. I have 2 friends right now in our HD support group who ended up testing negative for the gene, but have symptoms. When applying for SSDI, you do want to make sure to make a very strong first application.by patty c - Huntington's Disease Support Center
I took the survey. I haven't heard, so I guess I did not qualify. I am in healthcare, so perhaps that disqualified me. Pattyby patty c - Huntington's Disease Support Center
Interestingly, Communispace is one of the companys where my husband worked briefly before his diagnosis. It was a good company run by good people. Sadly, that was a period in his life when Rusty was symptomatic to the point where he could not learn the job quickly enough to pass his orientation period. I'm not blaming them or anything, but just letting you know that I have personal knowledge oby patty c - Huntington's Disease Support Center
I can't remember if Gene Veritas (pen name) is active on this site or not. You can find him on Facebook, just search his name. He is very active with HDSA and advocacy in the San Diego area. I'm sure he would be able to steer you in the right direction. Good luck having your husband at home. It is a huge leap of faith. Take care, Pattyby patty c - Huntington's Disease Support Center
It might help. With some forms of SSDI, you need to recertify your disability every so often. I don't know whether it would make a difference for your amount of benefit, though. I think it is worth a call.by patty c - Huntington's Disease Support Center
Ah! Thank you. I have a habit of rolling down, thus it was occluded. Thanksby patty c - Huntington's Disease Support Center
I wanted to search for an old post I had made , do we no longer have a keyword search option?by patty c - Huntington's Disease Support Center
I remember a few years ago Chris and I were constant supports for each other here and by email. You will find many spouses who have gone, or are going through the exact same thing. You can get through this. As Chris said, getting through this difficult time is heart wrenching, but the best outcome is you and your kids feeling safe again. Then, with some opportunity for healing, you can beginby patty c - Huntington's Disease Support Center
I've been there, and it feels like the worst feeling in the world. On one hand you are relieved that you and your kids are no longer in danger, but the feeling of guilt and shame is so heavy. He is where he needs to be right now. Hopefully, with the right therapy and medication, he will turn around so you can have a relationship again. He can't hurt himself or anyone else. He will be gettingby patty c - Huntington's Disease Support Center
I'm so sorry to hear of your story, Melissa. Do you have any family who you can count on to help you and your youngest daughter out? I am very concerned for both of your well being as your HD progresses, and her being so young. Rather than public housing, is there a small rooming house or private apartment you could rent? If you are determined to be disabled, could you go to a senior buildby patty c - Huntington's Disease Support Center
Many doctors have different treatment approaches, and unfortunately, what works for one person with HD may not be as effective for another. My husband's delusions did not get under control until he started on Risperidone. He has been on that one since he was first symptomatic. When he starts to get aggressive again, that is the med we dose up a bit. Started on 0.5mg twice daily.....tapered upby patty c - Huntington's Disease Support Center
We went through the same thing. Paranoia, thinking I was cheating. I hope he settles soon. I don't know how long it takes for the Abilify to have an effect, but some of these meds take a good week to settle in and do their job. Keep trying to be reassuring and calm. Deny calmly. Don't get dragged into a fight, it will only fuel his suspicion. I hope you can get through this soon.. Takeby patty c - Huntington's Disease Support Center
The sun is finally shining (and my mood with it) and the temperature will peak over 50 today in Western Pennsylvania! The snow has melted from the driveway that I kept putting off plowing. I can see grass! My thoughts go out to friends and family in New England. I hope you are all staying warm and well. Have a good day, Pattyby patty c - Huntington's Disease Support Center