My wife is 35 years old and has been showing symptoms for at least the last 4 years. She hasn't been tested but its fair to say there is little doubt whether she has HD. Her father died from HD 10 years ago in his early 50's and 3 of her aunt's and 2 of her cousins also have HD.

We have been together for 4 years and I have noticed symptoms gradually increase over this time, but I really have no idea when they started. I have asked her family but they are so oblivious to this reality that I can't get any real answer, and as far as she is concerned she only started noticing them over the last year. I am scared that she may have been symptomatic for quite some time before I knew her and I know the avg lifespan is 10-20 years from the onset of symptoms. To me her symptoms have progressed very fast over the last 4 years. So much so its hard to believe that they could have just started at that time.

Her symptoms include Chorea (becoming severe), she seems to have a hard time focusing on anything for more than a few seconds, sometimes she has very hard time communicating what she wants to say (can't quite get the right words together), has a hard time understanding what is being said to her, she chokes everytime she eats (which has me on edge at meal time), and I have had a real hard time getting her to do anything. All she does is watch t.v.. She has a few things that she enjoys and I can usually get her to get cleaned up (with my assistance) and get her out of the house for that. But as far as chores or anything she doesn't like she just doesnt do it. I had to put posted notes all over the bathroom to remind her to brush her teeth in the morning and before bed, but rarely does she do it without me standing right there nagging at her. She also has been having a real hard time reading lately, Also her spelling and handwriting are almost not legible.

I worried about her becoming depressed and I have paid close attention for signs of that, but she is such a sweet girl, and is always happy go lucky.

We try to live day by day, and enjoy every minute we can, some days are much worse than others. But I worry alot because I really don't know how much time we will have together, which I know that no one really knows that, and anything could happen to anybody at any given time. I think I would feel better knowing that this has all just begun and that we aren't coming up to the end.

thanks for listening,

Philip

You have a while yet Phillip. I had to bathe my wife for some time before I had to give up and put her in an NH.

She has many more years.

Philip, i'm sorry to hear your wife is getting so much worse, so quick. When i hear stories like that, i feel even more fortunate to be doing so well. Does she see a neurologist at all, and is she on any medications that could help her hd? If she isnt, i would suggest that maybe it's time for some help. My doctors have helped me so much with medications, that have made my life so much better. Even when it comes to choking. The seroquel that i take, even though it's a mood stabilizer, it also helps improve muscle function. So i used to choke on water several times a day, and when i started the seroquel, my choking almost completely went away, and i asked the doctor about that, and he said it was because of the seroquel. There's medications like memantine that i take too. So many things that can help.

I am not sure but what I didn't marry my wife with some symptoms 20yrs ago. They would have been slight at the time.. but she was quirky. Maybe part of her charm even. That being said, my wife didn't get to the point where your wife is for ten or more years. I would guess you have a bunch of years left, but they will be difficult. I can't lie about that part. Saying she won't do things she doesn't want to do probably isn't fair.. she just can't do them without assistance. It's hard to both concentrate on daily hygiene, read notes, and do them with chorea. Some days she may do better than other days but in general, those things just get hard without assistance. That's why we are called caregivers.. I do think it's safe to say she was symptomatic when you met. It's time to go to a doctor to monitor what is going on.. and I am particularly worried about the choking.. It may be time for purred food.

Welcome. I am so glad that Eric and Barb and Fred responded to you since they are so familiar with signs and symptoms of HD. I agree with Eric in terms of an assessment in terms of eating safety. There is a good booklet by Jimmy Pollard that is excellemnt. It is called "Hurry Up and WaiT" A Cognitve Care Companion. Huntington's Disease in the Middle and More Advanced Years. It has lots of ideas to help make things easier for you.

Paula

Phillip, Hello so sorry to here that your wife is falling fast. I hope that she will agree to go to the dr's as I seen with my family meds really do help, yeah maybe it does not solve everything but it may help with moods, eating and many more. I wish you the best it's sounds like you love her and willing to be by her side for the long term, I hope that you all can work together with this. Good luck to you I know all of the help that you will get from here will be benificial to me it seems that there is alot of good tips, opinions and facts on this forum.

I am so sorry you are dealing with this my father took care of my mom for along time there are meds you can ask about to help your wife I have learned that people are different when it comes to how they react to hd. I am so glad when you wrote that you live day to day and enjoy every minute because thats all any of us has and thats what my dad always said. he was grateful for every minute he had with my mom and he wouldnt have changed anything if it meant not having her . I wish you alot of prayers and this is the best place to come to for advice and friendship .

To Barb's question about whether she is on any meds, she isn't on medication but we do have her on some supplements. She is taking Creatine, Trehalose, and wild blueberry extract. She also drinks alot of milk so to be on the safe side we switched her to Soy milk, which she seems to enjoy. We do plan on getting her tested and to a neurologist in the near future, I'm currently working with my employer to get our office better health insurance and then we will have no reason to not get her the treatment thats best for her.

One other thing she has been doing alot lately is staying up all night and sleeping all day. I do think some of it has to do with her activity levels, on the days when she doesn't do anything but watch tv all day she has a harder time going to sleep. We have tried some over the counter sleep aids but those just make her more restless.

To Eric's comment (Saying she won't do things she doesn't want to do probably isn't fair.. she just can't do them without assistance. It's hard to both concentrate on daily hygiene, read notes, and do them with chorea) You are correct I am not being fair, but I do not voice this to her, I do understand her struggles, but I do notice how motivated she is to do the things she likes such as shopping or going out with friends and family. Also if I help to motivate her and she gets started on chores or anything she is a very hard worker and she won't stop till its done right. But getting her started is the hard part.

As far as her choking goes, I have been real careful to make sure when I make meals to chose food that doesnt seem to bother her, but she has her favorite foods and some of them give her problems, so I have considered blending up her food but she hasn't wanted me to do that yet. We also take care of her 89 yr old grandmother and when I'm at work her Gma will cook for her, this scares me because her gma isn't as conscious as I am, not to mention if she were to choke she couldn't help her. This won't be an issue for much longer because we just bought our first home and will be moving out of Gma's house in the next couple of weeks.

I'm trying as hard as I can to make the rest of our lives together wonderful, I want her to have all the things she has always wished for like her own home, I'd like to travel with her to new places and create things for her to look forward to.

thanks for listening,

Philip

Seroquel works really well for me, as an anti depressant and mood stabilizer, but more importantly, i was having a lot of trouble getting to sleep, and when i did sleep it wasnt a good sleep. Now i sleep really well, and it's helped with the choking too. So if you do decide to try some meds, this might be worth considering.

Youn are such a loving, caring husband. I wish you all the best with your journey with your wife.