Hello
I just got back from visiting my HD positive brother in law who lives 5 hours from us. He's in the last stage of the disease and it's so difficult to see him this way. When I see him I see my future. My husband is HD positive with no symptoms and I have 3 at risk children. Seeing my brother in law brings me down into a deep dark hole where there is no light. How do you cope with this disease? I have a faith but I feel God is distant.

I can relate. I see symptoms with my husband but he does not want to test. His brother is in the late stage too. But they are estranged so I've not seen him. These posts are very helpful and I learn a lot.

Hello to you both. I'm so sorry you and your's are going through this. I honestly cannot say I have an insight since I'm HD positive and the first in the family with two children at risk. I have learned most of what I know right here and from my own experience.

Please don't let this dark cloud overtake your lives. Your husbands, your children are precious or you would not be where you are today. As parents we know our children sense things and they will. I wouldn't totally discount the circumstances but if you give them a crumb they can and will in time put things together.

Try to be positive about the future. Everyday I wonder how or when things will get worse. I'll never know.......Hopefully, your spouses will see a treatment and most assuredly your children.

Have faith.....

Mike

Thanks Mike, for all your wisdom, on this post and the other one. Sometimes the anxiety is overwhelming but for the most part I manage it well with meditation, yoga and a strong spiritual practice. I knew he was at risk when we married almost 16 years ago. I have NO REGRETS and if he starts having symptoms and things get worse tomorrow I will have not regrets. We've had our challenges but we've had and HAVE a great life together. I am so blessed that because of his job security I have been able to stay home and be involved in our kids lives, serve on PTA boards and pursue my passions of writing and yoga. He is a Federal employee, in law enforcement. I try to live in the present!
I hope this helps you Terilyn?

Well said Mikee.

Find some support of other families affected by HD, either a local support group, or through this online community.

Rusty and I went to the national convention last year and were surrounded by many examples of families living positively through many stages of the disease. It gave me some hope that I have the strength to do this. Will is a great example of living positively.

As for us, Rusty shows most interest in participating in HDSA related events. We have been involved in education teams to speak to medical students, and genetics, masters social work students at the local university. We recently participated in Medical Grand Rounds at the University hospital, to teach other neurologists about HD. He enjoys these events and has even said he is inspired when telling his story. I am surrounded with warmth of people who understand what we are going through, and have made many good friends.

Rusty inspires me in his ability to stay positive as much as he can. He wants to do everything he can to fight it, and work to insure that we find a cure before our kids might become symptomatic.

I guess what I am getting at is that you can choose how you will live with this disease. Surround yourself with good people, and never be afraid or ashamed to ask for help.

Take care,
Patty C

I have been dealing with Huntington's Disease for 30 years now. My wife died of it in 1993. She was adopted and we had no idea what Huntingtons was, never mind that she might have it. My daughter showed symptoms of JHD in 1999. She is now in the late stages and lives at home with me.
It is human nature to fear the unknown. I have been on this forum for a long time and some of the most desperate posts have been by folks (or family/friends) who are at risk for HD or have been tested but are presymptomatic. This is totally normal. Not knowing what the future holds is very unsettling.
Huntington's Disease takes patients and their families down a path that was unexpected and often not planned for. The same can also be said for life in general but the challenges are often not as daunting. I have met a lot of HD familes. By the time a patient is somewhat advanced they and the family have been through a lot and have reached the acceptance stage. Those that do best plan as best they can, deal with new challanges as they come, and try to remain optimistic. Quite often the patient is more optimistic than the family members. Everybody needs to keep life going as normally as possible. In my daughters case she finished college and graduated magna cum laude despite being quite symptomtatic. We had to make adjustments but we coped. We still strive for the positive. We go for rides. We go shopping. We go to ballgames. Sure people stare but I've long gotten past that. It never did bother Allison.
In general I think that family members fret the HD journey more than the patient does. Life will not be what we planned. We might be scared. We might be angry. We might even resent the patient. We owe it to our families to present the best face possible. Sure we've been dealt a bad hand, but the patient has been dealt an even worse hand. I've moved long distances two times to give my daughter the best life possible. We've sought the best care and pursued all research opportunities. We've been open about HD with everyone we've encountered. Nothing is gained by hiding it.
In a nutshell, nothing in life is guaranteed. We can worry endlessly about the future. This is usually not productive. We can plan for all possibilities. Sometimes we might miss a step or two. My daughter always tells me that HD is not the worst thing that could happen. Fourteen years into JHD she still enjoys her life. I chose to take on her care. I do not have the right to feel sorry for myself. My obligation is to keep us both as happy as possible. This is still possible even with a disease as devastating as HD.
Stay strong, you owe it to all your family. Best wishes,
Howard

Howard, that's a great accomplishment for you both. Not much we won't do for our family especially children.

Optimism is a source of great energy.

I don't quite understand being quit about HD. I saw this as a child with my family and my sister with epilepsy. You and Patty have added tremendously to this post.

Patty, I would love to do some of the things described, especially while I'm able. Thanks you for that commitment to the HD community. I think the medical profession (many only familiar with HD) can benefit tremendously. Taking to them is great.

In my younger days I was in law enforcement, picked up on the retirement years.

Mike

We went to the national HD conference when it was in OKC years ago. A woman there was a yoga teacher and HD positive and was having success keeping many symptoms at bay through yoga. I wonder if there's more research on this? As a yoga teacher myself, I am fascinated and inspired by this possibility for my husband.

I think I saw her at an education day held for the New England chapter several years ago. I agree, yoga taps into the mind/body/spirit connection. I would have a hard time getting my once very macho husband to practice yoga, unfortunately.

I'm glad you are finding some ideas here, Jess.
One day at a time.

Patty C

One way to cope is to stay on top of current research for treatments and cures. There have been several very promising breakthroughs in the last few years.

One thing to remember about HD is that it is a slow disease. To give you an example, I stopped working in October 2009. My symptoms were (are) cognitive with the worst problem being my short term memory. My stress level decressed trememdously when I stopped working and I am right about the same level of symptoms that I was then.

Another thing to remember is that our generation's HD experience is not the same as previous generations. My Grandfather was not diagnosed with HD but was commited to an asylumn because of it. That was not uncommon in his generation. Many people were thought to be drunks because of their slurred speach and gait. They were often mis-diagnosed or not diagnosed at all.

Fast forward to me, two generations later. I am on Memantine for my cognitive problems. I'm not like I was before becoming symptomatic, but it has me holding steady so far. I am also on Citalopram. It is an anti-depressant. I started it because I was having problems with irritability. It was to the point that I was being mean to cashiers who would ask me things like if I wanted their store's bonus card, etc. I was snapping at people in the grocery stores who would almost run into my cart, or be in my way. I was even yelling at my dog. I have always been a very easy going person who gets along with almost everybody. So imagine my surprise and how upset I was by this. I mentioned it on this board and someone suggested asking my doctor about it. Sure enough, there was something that would help. I started having problems with apathy and OCD tendencies. My Citalopram was adjusted and has helped tremendously with these issues. Holding my symptoms in check keeps me hopeful that there will be a treatment in time for me to escape end-stage, maybe even mid-stage.

So for people that are not yet symptomatic, it might be here in time for them to not have symptoms at all or maybe just make it to early -stage and that's it. For the next generation, our kids, I really believe there will be treatment so they will not become symptomatic.

That is what gives me hope and keeps me positive, enjoying life even though it's not the same life as five years ago.

I can tell you the exact moment I stopped feeling sorry for myself and started to try to see the positive in my situation. I was watching a Jerry Lewis telethon for Muscular Dystrophy. Those kids never had a "normal life". I grew up, got married, had a child, had a rewarding career, have good health for me and my family (except for HD). Between their experiences and my HD experience, I'd take mine any day.

I wish you the best and hope you can find some peace in this crazy life.

Patty

Thank you all for all the good positive input. I feel better already. It helps to talk with people who get it. Your comments have been an encouragement to me.