Interesting that you said your son tucks his thumb into his hand when walking. My Phd does this also and holds that hand postion while he holds his arm across the front of his chest. I've never heard anyone mention that position before. Very sorry about your difficulty with your son. It must be very difficult as a mother to not be able to have an acurate answer. Seems this would wear at yoby LizzieAnn - Huntington's Disease Support Center
A bad/rotton tooth will put off an awful smell!! A tooth may look fine to you but be decaying or root dead and smell awful. Consider if she needs the teeth to chew or if they are of benefit to her for swallowing saliva or anything. Are you able to have a dentist examine her and see what the problem is?by LizzieAnn - Huntington's Disease Support Center
I'm looking forward to seeing what "holes" Barb can find in the new site's mouse maze! Just let her loose in there and she's trying every little nook and cranny attempting to find her way in and out. Good job, Barb!by LizzieAnn - Huntington's Disease Support Center
I used Phil's recommendations for my spouse's application for SS disability application and I made sure ALL the medical records were included in with 1st packet of verifications they requested from us..like sscard and some signed forms (and I informed them these were all the records so they wouldn't put the application aside thinking there was more to wait on -this includes the disability recommeby LizzieAnn - Huntington's Disease Support Center
my Phd is on Risperidone and it does very well with keeping his temper level. He was always pretty easy going before he started showing signs of HD (that was just his normal underlying personality) but with HD he would have episodes of not being able to keep control when small things irriated him. He is very "cooperative" on Risperidone and there is no more "walking on eggs"by LizzieAnn - Huntington's Disease Support Center
oh, yeah...on a practical note: I would have gotten LTC insurance, but I didn't know about doing that before a diagnosis was given. We weren't informed of that before testing. So, for all you who haven't tested yet.....Get your LTC insurance and Life insurance in order WELL BEFORE TESTING!!!!!by LizzieAnn - Huntington's Disease Support Center
Very good question! I actually just the other day asked this sort of question to myself. I asked myself "if I look back years later at me and my Phd hubby's lives, what would I have done differently? I asked it of myself now so that I could change "now" what I feel I wasn't doing as well as I could be. I decided that I had withdrawn "physically" from my Phd-hubby.by LizzieAnn - Huntington's Disease Support Center
Very happy news for you and your husbandby LizzieAnn - Huntington's Disease Support Center
Fred, Thank you sooooo much for that breakdown! That was so enlightening and informative. Much more than any others I have read and gives a caretaker a much better perspective on what we're dealing with as far as progression. Do you have an estimate of years between what you listed as stage 1 & 2 above???? The stage between "can not work" & "can not dress themselvesby LizzieAnn - Huntington's Disease Support Center
ironic, who of us wouldn't want our adult son to say: I want my own place, get a car and find a girl! Sounds like a normal guy to me Sorry, I know it's hard! Putting yourself in his position, he's going to want to have "more". You'll probably have to help him find it in other ways, such as other outside interest and a purpose in life.by LizzieAnn - Huntington's Disease Support Center
things to consider....low blood pressure, ear disturbance (allergy time), dehydration due to anything such as taking antihistimines? I'd have a full blood work done if you haven't. You said the doctor said he showed low potassium. What would be the underlying cause of low potassium in his blood? Is something else not in balance to cause low potassium? Such as Magnesium levels? Believe it orby LizzieAnn - Huntington's Disease Support Center
Fred and Eric and others are correct above. No one except family or personal contacts such as your church will help with paying a mortgage. Don't freeze up, you have to get out there with a plan. 1st apply for food stamps. If you have no income you meet the income guidelines for sure. Your liquid resources can not be over $2000 for food stamps(checking,savings, IRA etc.) if they are, then payby LizzieAnn - Huntington's Disease Support Center
My phd hubby had jerky eye movements called saccades early in his disease before he was diagnosed with hd. I don't believe he had them at his last Dr. appt but that could be due the medications he is now on? Again and Again you'll hear that the genetic test will tell you for sure. Make sure you have all your Health Insurance, Disability and Life insurance needs in place before any testing!!!!by LizzieAnn - Huntington's Disease Support Center
Eric, I'm not very good at commenting on something I know little about. I'm not quite sure what you are asking of the forum members. In general anyone who participates in ANY WAY in an organization in ANY Form has a responsbility to the unit or organization's ultimate goal (if the person is capable) and that includes just us measley forum posters but, in the end when all is said and done on aby LizzieAnn - Huntington's Disease Support Center
I would think #3 would knock out anyone on any kind of medication(had treatment).by LizzieAnn - Huntington's Disease Support Center
What are the 3 questions? I guess you have to be over 50 yoa for AARP and how are the rates?by LizzieAnn - Huntington's Disease Support Center
debonaire, You are right...there is no light at the end of the tunnel and the tunnel is very, very, very, very long! Unlike Cancer, maybe a cure or a quick death. Not the case at all with HD, a very looonnnnggg tunnel and ultimately it always ends the same. Sorry, if this goes against those who are upbeat about the current research and trials, but it's too late for my phd and debonaire'sby LizzieAnn - Huntington's Disease Support Center
Dear Debonaire, If you envision your future relationship as being a caregiver to your "boyfriend" for the remainder of his life. Driving him everywhere, preparing his food and even feeding him when he can no longer feed himself. No longer having give-and-take conversations as the person no longer has the ability to be concerned with your feelings or no longer has the ability to talkby LizzieAnn - Huntington's Disease Support Center
Howard, Thank you for posting that info on your daughter's success on Tetrabenazine. I was surprised to hear you say it stopped all of her chorea. That's more than I would have expected from this drug. This news you've shared with your daughter's success makes me consider this drug even more at this time. We have been hesitant to try it due to warnings of despression. Howard, did yoby LizzieAnn - Huntington's Disease Support Center
Unfortunately, if you're trying to get rid of the chorea all together I'm afraid you'll have a tough time doing that. My phd hubby has moderate chorea and he has been on Risperdal. He has been on a pretty low dose of 1mg 2 x day (2mg/day). It tends to lose it's effectiveness fairly quickly and the dose needs to be increased.(something we're attempting at this point to see if the increase willby LizzieAnn - Huntington's Disease Support Center
Can both of these meds be taken together or would Risperdal have to be discontinued if a phd started on Tetrebenazine? Any reasons or details of how the meds work would be appreciated. My phd emotionally does well on the Risperdal but his excessive chorea is affecting his quality of life and he states it does. I feel it may be time to attempt a medication adjustment, something I have notby LizzieAnn - Huntington's Disease Support Center
Okay, Well I really don't like posting my stuff on the internet, but since I had such problems trying to look up anything on this subject for phd's myself over this past year. I'll forego my privacy and tell you what DIDN'T work for me and my spouse. It was all at once that my phd hubby lost the desire and stated he just didn't think of sex hardly at all. It just didn't cross his mind.by LizzieAnn - Huntington's Disease Support Center
Check with the Medicaid office in the State you live in. You can call the office directly and ask the Supervisor questions. Their job is to "legally" help make the client eligible for services and they should be more than willing to help you. Medicaid's job isn't to prevent someone from receiving benefits and you should be able to ask them any questions up front about policy. Youby LizzieAnn - Huntington's Disease Support Center
Hi Jeff, No doubts you are "caring" and preparing financially. If you are looking at Medicaid to pay for her LTC care your jointly owned home mortgage will be excluded if you (the community spouse) resides in the home while your spouse is in LTC. You may need to remove your wife's name from the mortgage within 6 months of becoming Medicaid eligible, not all States are the same. Ifby LizzieAnn - Huntington's Disease Support Center
Fred, In the future, when my phd can no longer be left at home alone I would need some type of "sitter" service when he is to the point that it would be unsafe to leave him home alone. Then later on as he progresses I would still need care for him so that I could continue to work. Programs that would allow me to continue working and see that he is taken care of are what we would neeby LizzieAnn - Huntington's Disease Support Center
I'll stick with the subject: after I state my concerns of a government health plan put into play before the gov't ensures and proves they can reign in the fraud and waste on existing plans such as Medicare. I can't see how the US government can oversee a gov't healthplan for everyone when we all have seen and heard how they manage the rampant fraud in Medicare. Fix that and maybe move to step 2by LizzieAnn - Huntington's Disease Support Center
Alot like Nila...My husband has a CAG of 45 and is 45 1/2 years old. He also has had symptoms for about 9 years. And probably is in the Late Mid stage.by LizzieAnn - Huntington's Disease Support Center
Maggie, glad you have your sons in the same town and they are so helpful to your both. Fred, I feel what you said is very true and makes a lot of sense. Typically, people don't want to continue to look at a painful situation when they have a choice to eventually look away. Problem is, being a caregiver we are not usually given that choice. Outsiders are given the choice to look away and I cby LizzieAnn - Huntington's Disease Support Center
I'm so sorry to hear of your loss of your sister.by LizzieAnn - Huntington's Disease Support Center
I've heard people say about those that have HD and suffered an injury as to how the disease progression worsens after the injury. I was amazed at how immediate this occurs. My phd recently had a public choking episode and I had to do the Heimlich on him and after the food was dislodged, Immediately his leg started to bounce up and down, a movement in his chorea that was never there before. Iby LizzieAnn - Huntington's Disease Support Center