Hi, Just following up to see what results you had with hemp oil/cbd? Did you notice any improvements and if so, with what symptoms? Thanks!by schydawg - Huntington's Disease Support Center
Are they aware of your condition? You could request long-term disability from them if you have the coverage. Also, they could be held liable for discrimination if they know of your condition and try to fire you for it. I think you need to talk to an HR person or lawyer about this--and not theirs! Good luck!by schydawg - Huntington's Disease Support Center
I have been considering this for sleep issues and increasing chorea, loss of balance. Please keep us updated on your experience and what product/manufacturer you use. Thanks and good luck!by schydawg - Huntington's Disease Support Center
Are these ink cartridges still available? thanks1by schydawg - Huntington's Disease Support Center
I am so sorry that you and your daughter are going through this. 85 lbs is really low! Is she having difficulty swallowing or chewing? If that is the case, she might need to have high calorie liquids or smooth creamy things like pudding or yogurt that would be easier for her. Canned fruit is easy to swallow, too. HD patients eventually lose their sense of smell: perhaps she has lost her sense ofby schydawg - Huntington's Disease Support Center
Hi, It does seem like you are very young to experience symptoms when the CAG count is only 39. Stress and worry can have a profound effect on our minds and bodies. I hope that is all it is. However, to answer your question about the neurologist, they do an in office exam consisting of a number of questions and small tasks that they have you do which is apparently a very good indicator of wby schydawg - Huntington's Disease Support Center
Hi, My husband is in the later stages of HD and will now only eat a few things. Everything has to be sweet and soft or he won't eat it. I understand why this is happening (loss of smell/tooth loss), but I am wondering if anyone else has seen this behavior and if anyone has suggestions. He seems to be doing okay, but I don't know if someone can survive on PBJ's, ice cream, oatmeal, and pudding aby schydawg - Huntington's Disease Support Center
please tell your children (at least the one who got married) that they are at risk. They have the right to know so that they can make plans for their future. What if they want to have children? if they are at risk, they could go through IVF so that their child won't inherit it. but if they pass it on and find out that you knew. can you imagine what that will do to your relationship? I know peopleby schydawg - Huntington's Disease Support Center
please tell your children (at least the one who got married) that they are at risk. They have the right to know so that they can make plans for their future. What if they want to have children? if they are at risk, they could go through IVF so that their child won't inherit it. but if they pass it on and find out that you knew. can you imagine what that will do to your relationship? I know peoby schydawg - Huntington's Disease Support Center
VTgirl, No responsible doctor would ever just test you without counseling and assistance! You need to go to an HD center of excellence if there is one in your area, so that you can get all of the help you may need. They have psychologists, social workers, neurologists, physical therapists, speech therapists, etc, all of whom specialize in HD. If there is not one near you, you should find a geneby schydawg - Huntington's Disease Support Center
Hi, I just read your post from Sept. 8th about your husband's incontinence. I have been dealing with that this summer and fall, too. I tried to get him to wear Depends, which did help when he couldn't get to the bathroom in time, but he really hated that. I explained to him that I needed his help, because I can't constantly be cleaning up or doing laundry and that if he didn't want to wear themby schydawg - Huntington's Disease Support Center
Hi, It is very commendable that you want to help your cousin as she doesn't seem to have anyone else. Helping someone long-distance is very difficult. What can the friend tell you about her situation? Have you spoken to the family? Did she cut herself off because they were trying to get her to acknowledge she had HD and needed help? If you are able to contact your cousin directly, be prepared fby schydawg - Huntington's Disease Support Center
Hi, so sorry to hear about your situation. No one will judge you; you have already done so much, and everyone has a point at which they need help, so please don't be hard on yourself. Is she on Social Security disability? If this is her only income, she can qualify for Medicaid, which will pay for either in-home help depending on the state you are in or a facility. In Colorado, New Mexico and Calby schydawg - Huntington's Disease Support Center
Hi, If your son has been diagnosed, has he applied for Social Security Disability so that he has some income? If not, apply for that and possibly the supplemental income as well. Contact some social workers or a community liaison who works on housing issues who can help you locate some housing for disabled adults. There is usually someone in municipal government that works on housing and should bby schydawg - Huntington's Disease Support Center
I am so sorry that you are going through all of this. I don't think it is unusual. My husband used to scream at me over and over at the top of his lungs, "Everything is your fault!" Absolutely everything that went wrong was my fault. Sometimes my daughters and I would joke about it, because it was the only way to cope without crying or screaming--like if the weather was bad or somethinby schydawg - Huntington's Disease Support Center
I think you mean Primerica. Check out reviews of this company first. They have the worst reviews I have ever read of a company that is supposed to be legitimate.by schydawg - Huntington's Disease Support Center
I am so sorry that you are going through all of this. I think you did the right thing in leaving and getting your daughter out of the situation. There is a point at which you have to protect yourself and daughter. I wish I had done the same; I exposed my kids to way too much trauma and heartache. So my answer would be that you don't allow her to drive your daughter. However, I don't think you haby schydawg - Huntington's Disease Support Center
I just found out that funding for the social worker for my local chapter of hdsa has been cut. HDSA has directed the all-volunteer boards of these chapters to fundraise the salaries for these professionals who run support groups and offer so much help for HD families. I understand that this is happening all over the country. The services that these social workers provide are invaluable for thoseby schydawg - Huntington's Disease Support Center
Recently, while watching TV with my husband, I have noticed that he will cry if the storyline is at all sentimental. He has never reacted this way before in the 35 years I have known him. He has had symptoms for more than a decade, and is, according to his neurologist, in late middle stage. Has anyone else seen this?by schydawg - Huntington's Disease Support Center
Mike, good point about there not being any one solution--HD is so complicated and idiosyncratic. We can only share what we know from our own experiences with it. My husband is in the later stages and we have been dealing with it for more than a decade now---hence my resignation and exhaustion about certain behaviors and symptoms and remarks about choosing your battles! In Amber's case, maybeby schydawg - Huntington's Disease Support Center
Thanks --I will pay closer attention to the shower temp and the force of the water. Amber, my husband is so stubborn about going to bed or showering that I finally have had to decide what is worth fighting over. I decided that smoking was a bigger deal. If he wants to stay up or sleep on the couch, he can, but I have to get up and go to work in the morning, so I go to bed. In fact, I recentlby schydawg - Huntington's Disease Support Center
Yes, I was referring to my husband's refusal to take showers or change clothes, although I definitely understand about being too tired to take showers myself! Anyway, I usually can only get him to take a shower once a week or if I am taking him out somewhere. He does not have severe chorea, so I don't have to do something like sponge baths. I have made the shower safer for him, and I am alwayby schydawg - Huntington's Disease Support Center
My husband will only sleep on the couch downstairs where the TV is. I gave up trying to get him to sleep in a bed. It makes me feel like a neglectful caretaker, but he seems to sleep down there and can watch TV when he wakes up (he never sleeps all night straight through) and then he goes back to sleep for awhile. Does anyone else have struggles with showers and hygiene? Any ideas?by schydawg - Huntington's Disease Support Center
I am so sorry that you are going through this. I felt compelled to respond as the obsessive behavior you mention (especially about painting and re-painting one room) is exactly what my HD+ husband did for months on end. It is a symptom of HD. The insistence on starting a job over from the beginning rather than just correcting the small error itself may mean that the executive function part of hisby schydawg - Huntington's Disease Support Center