HD Blog

Hi Dave,

Sorry to hear you are sick and tired. I hope you'll soon be better. Sorry to hear these sad words about your friend, I'll hope she will pass these bad times with the strengt of her beliefs. My prayers be with her.

I'll will post the messages on HD I'll find and place them on our Blog so you can take the rest you needed now at the most. So someone on this earth still be posting items on HD for you, another country, but with the same compassion.
Because HD is Evil, and everyone has to know!
That the only way to fight this horrible disease.

I hope my English is good enough to understand.
Best wishes for you and your friend. Hope to see your posts again soon!

Gerard (Netherlands)

Dave-

Your break is well deserved. I wish you and your friend the best. Your sight is one of my favorites (along with www.hdlighthouse.org) due to not only your timely postings, but your editorial comments that have the perfect combination of realism and optimism. Thanks again for your hard work - it is greatly appreciated.

- Rob

PS - Gerard, what is the url for your website? I'd like to check it out...

I meant "site", not "sight". :)

Hello Rob,

Our Home Page is Huntington Pagina, a Dutch personal website, but has also a lot of English items. url is http://home.planet.nl/~lette111

There is also a web-log on this page you can
visit. http://huntingtondisease.web-log.nl/

Best wishes,
Gerard

I hope someone can give me some advice. I am in a relationship with someone who is at risk. It has been just over a year but we are very much in love. However, things are becoming increasingly difficult and the relationship is at the point of breaking up. There are a number of reasons for this, but it really boils down to my inability to handle the thought of what may happen, and the corresponding lack of trust that my partner has in me as a result.

I feel angry and resentful in general - I feel as though I have been robbed of something. This is directed at no one in particular. But I also feel anger towards my partner, and resent the demands that I feel she is making on me.

There are also feelings of guilt involved as I know that, ultimately, I am not the one at risk and hate this feeling of selfishness, and the thought of her being on her own to face this potential scenario weighs heavily on me.

I am very scared that I will not be able to handle it if the worst happens, and that also I cannot live in this state of uncertainty of not knowing. I realise there is no easy answer, but can anyone show me a different perspective to the one I am now completely mired in? I love my partner very much and we have to make the best decision for both of us.

Many thanks.

D-

Post your feelings on www.hdlighthouse.org on the forum (http://www.hdlighthouse.org/see/index.html?forum/bb/bb.htm).

There are a lot of nice people there including people who are positive, at risk, family and spouses. They can give you some advice and a unique perspective....

D, that is a tough spot to be in.

Any good relationship has a foundation of trust. No relationship can last without it.

If your goal in dating is to find someone to "spend the rest of your life with" then you need to sit down and examine your life and motives. The typical marriage vow involves words such as "for richer or for poorer", "for better or for worse", "in sickness and in health", & "till death do you part". There is a good reason to include those words in vows...life is hard and, suprisingly, one of the biggest killer of marriages is 'good times' which is why the words 'richer', 'better', & 'health' are also part of the vows - but I digress...

If, when you examine your motives, you determine that you are not looking for someone to spend the rest of your life with, then you need to communicate that to her. Because if she is looking for a lifelong partner, she needs to know that.

Huntington's Disease is not the only risk that there is your relationship. You could be hit by a bus tomorrow and require constant care, she could get cancer, you could have a stroke, she could get M.S. etc. etc.. The odds are high that in a long relationship something like that will hit one or both of the partners and maybe more than once.

Marriage is about 'making it through' and 'being there' for the other person...this is true even if there isn't the threat of HD. You have to give "your all" to a relationship. Marriage isn't a smorgasboard where you get to pick and chose the parts of yourself or the other person. It's a banquet and you get it all. And you know what? ... it's worth it and studies prove it - married couples live longer and are happier than singles.

There is no shame in not being ready for this kind of committment, but you need to be honest with yourself (and her) when making this assessment. And even some people who can handle the unknown risks, can't handle the known risk of HD.

If you make the choice to stick in the relationship "no matter what" realize that a person affected by Huntington's Disease may not - the disease is not fair in this regard. I've also seen some very stong and loving marriages even when one person is affected by the disease.

I'll finish with this comment - I believe that those who are asymptomatic today are unlikely to die from Huntington's Disease. The effective treatments/cures are coming and, with the exception of Juvenile HD, the disease is slow moving. But you should not make your decision based on the gamble that "she won't get it". As I mentioned earlier, there are other risks and the two of you need to be there for each other should one of life's other 'unexpected' moments happen.

I wish both of you the best as you two try to work through this. The, just posted, suggestion to visit HD Lighthouse is an excellent one. You can also try the Hunt-Dis list where you'll find a sympathetic crowd that will gladly discuss the issues with you. I would also like to suggest you visit a HD support group meeting. You'll meet people who are going through what you fear. You might be surprised to find strength, not increased apprehension, when seeing and talking with others dealing with HD.

No matter what, be honest with yourself and be honest with her. Best wishes,

Dave

Thanks for your thoughts and comments Dave; I've been feeling incredibly isolated over the last few months and I am genuinely appreciative. I keep expecting that something inside me will click and I will know exactly what to do. Whilst relatively young in years, I am old enough to know that this is not going to happen just like that, and I will need to work hard at whatever course of action we take. I feel quite hopeless at the moment, I have to admit.

I just wish our relationship could develop without this added pressure - it is almost as if the relationship has now become incidental.

I am almost reticent to ask you (false hope etc) but I will: you say that those who are currently asymptomatic will be unlikely to die from HD; can you or anyone else qualify this a little?

I am also going to take up your suggestion and go to a support group. This is something that I had been planning to do, but it is not as easy to access these as I thought it would be.

I think that if I can exhaust all these opportunities to learn about HD and the likely implications, then I will be better placed to make that decision and handle the consequences of that decision, whichever way it goes.

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