I'll echo what the others are recommending. My husband was already strongly symptomatic when he went for genetic testing. Even so, they made an appointment for genetics counseling to answer any questions and dispell any myths he might have read online. Depending on which physician you go through, and if they believe D to be symptomatic, you may or may not need to do the pre-counseling visit, aby patty c - Huntington's Disease Support Center
The biggest thing I hope for when my kids join extracurricular activities is that people will treat them like normal kids. It would always be nice to offer a "How are your parents?" and "Is there anything you need. " If the kids do not open up, step back and let them enjoy an HD (and CF) free evening with other kids their age. Though there is a need for outside assistanby patty c - Huntington's Disease Support Center
You really cannot help him if he does not want your help. Yes, it sounds as if his postings are a bit confabulated, but I'm not sure they are delusional to the point of being a danger to himself or others. While, at first glance, Barb's response seems to be harsh, she is right. He has been driven away, either by his own internal struggles with his HD and the delusions his mind creates, or drivby patty c - Huntington's Disease Support Center
We just sat through Rusty's neurologist's lecture on HD to the medical students. According to her, wide based gait, decrease in the accuracy of foot placement, and a loss of cadence (the rhythmic pattern of walking) are all signature gaits for a persone with HD. These can also be other things, though. My sister refuses to walk beside me when we were younger, as I was always walking into her.by patty c - Huntington's Disease Support Center
Congrats Dusty. It will be great to hear from you again. You always have great wisdom to impart. Pattyby patty c - Huntington's Disease Support Center
HI Chanelle. This is the primary HD related forum I participate in. I have often been on both the offering and receiving end of advice. None of us are perfect and we take each day as it comes. I am now working on finding endeavors I can do from home to supplement our income. The tough thing about being a therapist is I can't seem to get the patients to come to my home..LOL. I am trainingby patty c - Huntington's Disease Support Center
Hey Barb....I am an occupational therapist. It is a confusing name derived from our "occupations" as being all the skills we use to get through our daily lives. These fall into 3 categories..WORK, PLAY, and LEISURE. Meet any OT, and you'll hear how we are always having to explain the difference between OT and PT, and between OT and Vocational Rehab, which is the job focused therapyby patty c - Huntington's Disease Support Center
What is a "normal" life, really? For our kids, a normal life is being raised in a loving family with two parents who love each other, care for each other and make ends meet as best as we can despite very difficult financial situation brought with it all. They do have memories of his agitated and angry time. They lived with me alone while he was committed to a state hospital for a yeaby patty c - Huntington's Disease Support Center
Hi Janine. Your question is a difficult one to answer. There is a degree of resiliance needed to assume a caregiver role. I would bet that many of the caregivers on here have gone through varying degrees of the struggle you are experiencing right now. Caregiving is not for anyone. It requires an ability to put others' needs ahead of your own while balancing enough of your own needs to stayby patty c - Huntington's Disease Support Center
My heart prays for you in what must have been a very difficult decision.by patty c - Huntington's Disease Support Center
Hi Pop pop. Unfortunately, dealing with alcoholism is even more difficult with HD involved than in an otherwise healthy person. While we were seperated, my husband was living with his brother and drinking constantly. The only way to stop is with his acknowledgement that this is a problem. For a while, we were able to get my husband to take antabuse, which would make him violently ill if heby patty c - Huntington's Disease Support Center
Both moods and movements, actually. He started when he maxed out on Xenazine dosage.by patty c - Huntington's Disease Support Center
Marinol, (dronabinol )is a synthetic THC which likely does not fall under the same state regulations. My husband has taken it successfully for years.by patty c - Huntington's Disease Support Center
Hi Heather. I think your husband is delaing with all this information in the best way he can handle right now. In some respects he is right. You may be noticing some "restless legs" etc., but are the symptoms limiting you functionally? Are you still able to care for yourself? Are you working? Are you enjoying activities with your family and watching your children grow? You're probby patty c - Huntington's Disease Support Center
That is funny Heather. I have been on and off of this site for several years. I recently have taken time to start reading and responding to posts again. Perhaps I was called back just for you!!. I am glad you have some family support around. It is so important. My husband is 46, with a CAG count of 43. He did have a period of time when he was not able to be with the family. My kids werby patty c - Huntington's Disease Support Center
I'm sorry for what you are going through. It must be very hard to be faced with these decisions. That being said, no one has the right to tell you when you should or should not test. You are the person who will live with this information for the rest of your life and you alone know how that will impact you. The best thing you can do now is gather all the information you can about the testingby patty c - Huntington's Disease Support Center
Kathleen. You are going through so much right now. The biggest stressors in life are said to be new job, new home, and health problems. You seem to be taking on so much at one time. Your stress can be making the HD symptoms much worse than they might be otherwise. That was definitely the case for my husband earlier on. I hope you can talk to your husband about your worries. I know youby patty c - Huntington's Disease Support Center
Hi Heather. I'm glad you have found this site. There are many very nice and knowledgeable people here. I'm sorry for your news. If you keep your positive attitude, you have the ability to live as full a life as this disease will allow. I hope you have some support nearby or even just someone to talk to, or to give you and the kids some help. Welcome! Pattyby patty c - Huntington's Disease Support Center
Will do, Will.by patty c - Huntington's Disease Support Center
Well, I put some of our tax refund toward a trip to Louisville, KY and the HDSA convention. I have been there before with just my husband (Las Vegas in 2012) and this is the first time we will be bringing our kids. (12 and 11) We will be there from Wednesday evening through Sunday. If anyone is going, perhaps we can keep an eye out for each other. Let's put a lighthouse on our namebadge, LOby patty c - Huntington's Disease Support Center
As do I, Chicago, as do I. Pattyby patty c - Huntington's Disease Support Center
RJ, If the decision were to put it in at that stage, our response might have been different. I think it was the best decision for us right now. As it stands right now, I am not regularly using the tube for feedings. He is strong enough to eat all of his meals, and he is maintaining his weight so for this we are very greatful. I am sorry for your loss. I have a great deal of respect forby patty c - Huntington's Disease Support Center
I can tell you that in our case it has gotten much much better. Rusty was diagnosed in 2008. He had a few years of very violent behavior before that. Receiving his diagnosis helped in that we understood what was going on and he was also more accepting of taking meds. It did not at the time help completely, and his violence led to our being separated for a year. He was hospitalized at a stateby patty c - Huntington's Disease Support Center
I have not heard of a specific link between HD and bone density. There is however a very strong link between decreased bone density in the chronically bedridden. This comes from the lack of weightbearing stimulation on the long bones (use it or lose it). In this case, the only link would be on those who are bed and chair ridden. Pattyby patty c - Huntington's Disease Support Center
Marlyssa. Have you obtained any of the literature from HDSA on HD facts and how to deal with them. The information is out there and if you can't make them go get the info, get it for them. I wish for you that they could understand the toll this is taking on you, and that you need their support, not their criticism. The only way they will understand is if they learn. Is there an HDSA soby patty c - Huntington's Disease Support Center
Marlyssa, I sent a P.M. I hope you are feeling better.by patty c - Huntington's Disease Support Center
We were faced with the feeding tube question much earlier. My husband is still living with us and still enjoying the family pretty well. In December, he aspirated terribly and ended up in the hospital. He was so weak he failed his swallowing test altogether. There was no choice at that point but to put a feeding tube in to hydrate, nourish, and medicate him. His decline was so rapid that weby patty c - Huntington's Disease Support Center
I can't believe there have been no posts since Wednesday? Is the Forum working?by patty c - Huntington's Disease Support Center
I care for my husband with HD. He is 46 and in later-mid-stages. We care for him at home. I have 2 school-aged children who are at risk. My husband was adopted, so we did not have other family members to "show us the ropes" so to speak. I have my own opinions and experiences to tell you about. 1. How aware is someone with HD of their own illness? Are they self-aware or do theyby patty c - Huntington's Disease Support Center
I would hope she has some support during this time. If you do not feel she would be receptive to speaking to you, perhaps reaching out to another family member nearby. Encourage her to try to reach out to the HD community where she has just moved to. Local HDSA affiliates may have a social worker who can talk to her or be able to help her find other families. Drop her a note to let you knowby patty c - Huntington's Disease Support Center