Hello all. My boyfriend of 4 years was tested positive when he was 18 his father had HD, he is now 43 and some things as of lately seem to be the early onset of the disease. He is also an alcoholic. I struggle with him continually feeling like i can do better he tells me, i truly love him and have not felt a love like this before in my life I am 41, i know he truly loves me as well. I want to learn more about HD so i understand his behaviors a bit better. He is on depression medication and has been for sometime, but do think it is a time for change, he has not seen any doctor that deals with neurological issues, just his family DR. I am wondering what is the best way to approach getting him to see the correct DR. He is not in denial of his disease and knows and is scared that the disease is progressing, hence pushing me away as much as he can to protect me. I am scared of the future as he is as well, but our faith is really strong and know we will all be ok. I know our relationship has had many ups and downs, and as of recently I know understand that it is truly the early stages of HD. Impulsive control seems to be the most apparent issue. I guess just looking for a place to share my struggles and ways to encourage him as the disease rears it's head upon us.
Thanks
Diane

One thing I would tell him which is true is that there are medications that will help - not only help but may slow up the progress of the
illness.

Yes, there are meds to help. He needs to turn to Christ Who will give him the power to turn from alcoholism.

Curt

ewyoungh, people here don't need or want to be preached at or judged, but my post to you will probably be deleted again, I don't care. This is not church, this is a real world of more pain on this forum than you can ever imagine, and this type of pain deserves acknowledgement and a kind listening ear, not sermons.

Diane, yes, there are medications and nutrition, that not only help symptoms, but also help slow the progress of the disease. SSRI's not only help symptoms of depression, but also help slow the progression of hd, also memantine is worth looking into too...but, the alcohol is a big problem



Edited 1 time(s). Last edit at 06/21/2014 07:34PM by Barb.

I strongly recommend Creatin. It has proven to slow the progression. Lots of good feedback on Creatin on the forum . I recommend daily exercise too. A study shown reducsion of symptoms for up to 1 year.

I'm not preaching. This is the real world and Jesus Christ is a real Savior Who can hear our cries of help and transform a person who is an alcoholic.. My father was an alcoholic. Really, he was the town drunk. He beat us many times. That on top of HD, makes the situation very difficult. He had HD. If the alcoholic part can get out of the picture, the HD meds can be a help.

Thank you all for the suggestions. Any idea on some of the drug names that have worked for some? I know each person is different. He knows the alcoholism is a problem and not helping, vicious disease, and with HD it is a vicious cycle for him to escape. No excuse, but he does know it's a problem and trying to do something about it, but is not an easy task, but one he is working to battle, i will share with him about the possibility of the meds not working due to alcohol .
He was in a HD Study and is taking co-q-10 this does help him some with other symptoms. Any suggestions on the medication names would be great. His family DR is in the loop with his HD, but as you all know they are not real knowledgeable about it. He is hoping to find meds that will help and frustrated as his stage is not bad enough yet for some to help him.

So sorry to hear of your struggles. My husband was diagnosed last year with HD and is a 3rd generation. His dad was also an alcoholic so it was so hard to tell that side of him from the HD side. We were not around him alot. Donnie is on several medications for different things but the Zolaft and the Cyrical has really helped his moods and anger outburst. You can read more about my struggles on here under "my story" if you'd like.....

I personally doubt a general practitioner is qualified to deal with the entire scope of your boyfriend's disease. It's possible, your boyfriend is not being completely frank with his doctor, therefore the MD is unable to determine if enough symptoms are manifesting itself to warrent further testing or a referral to a specialist?
His best bet (and yours), is to see a neurologist at an HD Center of Excellence, or at least one who specializes in Movement Disorders or has a lot of experience with HD. My husband's neurologist also specializes in neuropsychiatry, so she has been wonderful in balancing his neuro meds with his psych meds. Otherwise, try to get him to see psychiatrist that will work closely with the neuro doc.
We were very lucky in that my husband's GP recognized his symptoms during a physical and immediately referred us to a neurologist. In turn, that neurologist was honest about not having a lot of experience treating HD, but sent us to a movement disorder doctor with HD experience who has been tremendous in helping us control his psychiatric issues and chorea.
It has been a very bumpy road for us as it took several years for me to learn how to deal and react to the many aspects of his disease, and also to get the right combination of meds to manage my husband's bouts with extreme agitation and compulsions (still digging myself out of debt). Right now he is on Risperidone, Effexor XR, Klonipin, Seroquel, Namenda, and Aricept (the last two are to try to slow down the cognitive decline). It does sound like a lot of meds, but it took years for us to get to a stage where we weren't afraid to be around him. It also will most likely not be the last time we have to change/adjust the medications. Sadly, this disease can only progress. Our goal is to keep him at home with his family as long as possible where he is the most happy.
You mentioned faith in your post. This whole experience for my kids and I has strengthened our relationships with each other and with God. I believe He gives us the peace and patience we ask for on a daily basis. If you don't have a strong support system within your community, finding a counselor for yourself may be beneficial to get you through some of the tough times. Just don't go it alone.
Best of luck to you.
djc

It is great to share and encourage each other.

I had a chat with him the other night about going to a neurologist. He is against it for now, as he has been down that road before and knows it is a very long process, things are not too bad yet, hence he does not want work to find out as he is very capable of working yet etc. Just these bouts of impulse control and extreme irritability that he is very aware of and does not want to be like. After reading some of other's issues with the disease, it does scare me, but not something i am going to run from, i believe God has me in his life for a reason. He has tried and was successful for 6 months battling the alcoholism, but then he got too depressed etc and gave up on it, wondering if meds for impulse control might help this as well. Thanks all for sharing with me your experiences and thoughts!! I truly appreciate it. It does help little by little to be more enlightened that his moods are the HD and not just him changing from who i know him to be(or hiding from who he really is).