Surfing the Internet

By Maryann Moynihan

From the Winter '96 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

I recently had the opportunity to 'surf' the Internet for the first time, even though many of my fellow board members have been toting its praises for a very long time. The Internet was installed on my computer at work and seeing as Internet access was now, literally, staring me in the face day-in and day-out, I decided to do a little 'browsing' in regards to HD. WHAT A FIND!!! Using one of the Internet's search functions, I typed in the word 'Huntington's_Disease' and up popped pages and pages of information.

The following are articles/letters I stumbled across and wanted to share with you. (I'm probably breaking some sort of 'Web' law by re-printing this information but I could not resist sharing this information with other Internet novices.)

These letters/articles are from the Huntington's Disease Forum from Massachusetts General Hospital, the Neurology Web-Forum for interactive on-line discussions, an open forum of questions and comments related to HD.

Thank You

This article submitted on 10/08/96

Hello everyone! This is the first time I have written. However, I have been reading the articles and responses on this forum for quite some time. I have never really talked to anyone about HD, except my fiance, so this may end up being a long letter.

I am 28 and female, and my fiance is 27. His mother has HD. She chose to tell her children 3 years ago (through she's known for 15 years). This was shortly after my fiance, L., and I began to date. (I use an initial at my fiance's request.) Obviously this came as a great shock to us. L. chose to stick his head in the ground about the whole issue, at the time, while I did the exact opposite. I read about everything regarding HD that I could get my hands on. I am writing to say THANK YOU because your articles - the emotions, the fear, the elation of getting a negative test, the "relief of finally knowing" after getting a positive one, the support and words of hope - all of it has been an inspiration to me. I realize that HD will affect my life like it has affected all of yours. Since the time L. and I were told about HD, his mother's health has declined very quickly. It hurts us to watch as she struggles, unsuccessfully, to do the things she once took for granted; moving, eating, etc. It relieves us to know, though, that she herself seems less aware of the changes than we do. There is also relief to L. and his brothers that there is an explanation for their mother's life long irrational behavior, moodiness, depression, and abusive behavior. Unfortunately, for L. and his family, his father also became disabled many years ago and this has made caring for his parents very difficult. It is also very hard emotionally on L., and certainly this, along with the uncertainty regarding his own health, is very stressful.

In the past four years, he and I have talked about all the issues regarding HD. I feel it is because of the HD and the need for discussing these issues that we have built a closer and stronger relationship than many other people. We have together made many changes in our lives and many decisions regarding our future. We have decided against testing, at least for now. We are checking into life insurance and plan to get disability insurance as soon as he begins his career. Obviously, we got engaged. We just bought a house and remodeled it top to bottom. And he returned to school to finish that degree he never completed. After many talks, tears, and soul searching, we have decided to have children very soon after we get married. We feel that we have a love that can be rivaled by nearly no one and one of the strongest relationships that exist. (We were both married before and learned so much from those experiences as well.) Though it may be selfish, we feel that it is in that kind of home in which a child deserves to be raised. We questioned whether the world would have been a better place if his (or any of your) parents would have made the choice not to have children because of HD. The world would definitely not have been a better place for me or any of the other people whose lives L. has so positively touched. We plan to be very open and honest with our children about HD when they are old enough to understand, regardless of whether or not L. has HD, since many of their relatives will have it. And if L. does end up having HD, I want to be the one to care for and support him for as long as I can, and to help make the decisions that may need to be made.

Perhaps that sounds naive, but I love this man with all my heart and soul - he is my best friend. And I know that he would unquestionably do the same for me. Although I have had a very wonderful life, I have also dealt with tragedy and have cared for a couple of very ill people, very close to me. It is hard, the hardest thing I ever did. It is draining, emotionally and physically, but it is also rewarding and very natural for me to be a caregiver (it is also my profession). I am thankful that at least I have the knowledge about HD to make informed decisions and that if L. has it, it won't take us by complete surprise. Yes sometimes I still worry or get nervous - if there's a strange twitch or when L. is moody or irritable, but I realize that most of these times he is being normal. The thought has been with me, at times, that I may someday be caring for my husband and children and may lose them to HD. And yes, there are days when I am totally convinced that he will have HD, but there are weeks when I am certain that he won't. I can live for now without knowing - life offers no guarantees. Overall, we both refuse to look for signs and symptoms or worry until (unless) we have to. Most of all, like everyone else whose lives have crossed paths with this terrible disease, we pray each day for a cure or treatment.

I keep the following poem on my desk for inspiration - don't know the author -

"We all come upon unexpected curves
and turning points, mountain tops and valleys.
Everything that happens to us
shapes who we are becoming.
And in the adventure of each day,
we discover the best in ourselves."

Please don't be afraid. (L.'s mother told me that.) Life is too short for fear. Live each day to the fullest - filled with love, light, laughter, and friendship. Remember that the angels are watching over all of you. My thoughts and prayers are with you, your families, and loved ones. Thank you again to everyone that's written.

Ordinary people like you and me can then send responses to these letters. Here are two responses posted to the above article.


This response submitted on 10/10/96

I was so totally amazed by your letter and the depth of your love and compassion. There are so many great things that you said and they took my breath away. The poem is one that I will surely keep with me.

My father had HD and so the subject is a very emotional one for me. I have chosen not to be tested at this time because I feel as long as I am coping OK, then that is good enough for now. I have my optimistic days and my not so optimistic days. I have a wonderful husband that is very strong and wise like you and I feel so blessed. I can relate when you speak about your love for one another. I had tears in my eyes when I read your letter. I am continually amazed at the wonderful people that commit to relationships with people at risk and they are truly "angels on earth".

I found out that HD was in my family after we were married and already had kids. We talk about whether we would have done anything differently and my husband says that he would have for sure done things the same. He definitely would still have had children. My father had later onset and my husband feels that you can still live a pretty full life before that point. He also feels that with all the new technology, the whole thing may work itself out. My kids are wonderful and they know all about HD. My oldest just got married and his new wife is very supportive also. Well, I better close now. Thanks again for the wonderful, uplifting letter.

Think Twice about Children

This response submitted on 10/16/96

Your article is very moving - you and L. are obviously very loving and courageous. I wonder, though, if you are making a well informed decision to have children, in light of your situation. If your husband-to-be inherited HD from his mother, and can possibly pass them on to your children, there is a small chance that the inherited HD gene could expand and possibly result in an early onset of the disease for your children. This may be a small risk (I am not familiar with the statistics), but you may wish to consult a genetics counselor before making your final decision. Best wishes for a fulfilling future.

Keeping Optimistic

This article submitted on 08/21/96

I am a 29 year old male, married with two children, ages 4 and 4 months. I am at risk of getting Huntington's Disease since my mother had it and my grandmother had it. Also, I have an uncle who is probably in his last days. I have two brothers and one sister all of which are four or more years younger than myself. I am writing only to share my thoughts. I fear every day that I may get this terrible disease, however, I will never regret having my two children. I knew from an early age that I was not going to let this control my life and stop me from having a family. Am I selfish? No - I don't think so. Just because we can find out our future by taking a test doesn't mean we know our children's future. I am very optimistic that someday soon there will be a cure.

Here are two responses posted to the above article.

Great Attitude

This response submitted on 08/22/96

You sound like you have a great outlook on life. I agree with you. I turn 24 today and have a beautiful eight month old daughter. My mother was diagnosed this year at age 45. I'd never heard of HD before so it has been a rough year, but I am slowly learning to live with this new information. HD might be what may ultimately kill me, but I refuse to let it take my life now. I would rather live my life to the fullest each day today, than to be sick in 20 years or so and think "well I spent all my life worrying this would happen and now it's happened." God has given me life now and I intent to live it. Although I will always pray for a cure. Take care.

I agree!!!!!

This response submitted on 08/21/96

I agree, I don't know where I would be without my children. I am a 37 year old female . We have just found out about the history of HD in my family. Who knows what my children can accomplish and what impact they might have on the world while they are here. I have realized that you just have to have faith. Thanks!!!!

Send comments to Renette Davis by clicking here.

Last updated: Dec. 7, 2010