HD Posts

I have joined a few Forums on Huntingtons as a way to gain information and share stories and meet up with people. I tonight read the following things on a forum and have taken the words and put them on here. I found them moving and true and so very honest and could relate to so much, I just wanted to share.

HD POSTS.

I have always felt that and still do feel that there is systemic problem in the structure of the HD community. Ours is small. And it started out as not just undeserved but unversed. When a few people finally organized... then organized further... and became natl. and the go-getters emerged. Great people and needed people. Getting any information out about HD to whomever was better than not having any. And these few people were big to the average person dealing with HD. From something to nothing was a big deal. They meet and decide stuff. Doctors meeting doctors... officers talking to officers... board members talking to board members, social workers speaking to social workers. Then they show up and tell us what we need.. or how we think and how we should feel. They don't check if they have it right. Or if they are concentrating in proper directions. And what is supposed to be empowering for us really is just us being treated like kids. "Here is what you need and why you need it." And even how you speak about it in public.

Where is the safe place to go and say I don't like my mother with HD? What is the official answer to that? "Remeber it's the disease, not the person". Well duh. A lot of freaking good that does a 15 year old who gets yelled at in public... and belittled by mom.

Why is identifying HD early or even pre-symptomatic important? Officially, to help with trials... or start treatments to avoid problems later. They won't say or even address, so children, spouces, can resolve issues at the earliest point possible so the kid doesn't hate mom for 5 years prior to the more obvious HD symptoms and then feel guilt forever after for that hate. These are the issues we face... along side the obvious ones that a doctor gleens from 20 mins with us twice a year.

Who says officially not everyone is cut out to be caregiver? Not everyone is. They tell ya how to do it better, but never say you may not be the right guy or gal for this job.

What are the official responsibilities of a sufferer? Do they have a responsibility to their kids.. spouse, family? Or even to themselves? How many suffers before hand, make plans for long term care themselves? I mean go looking at places.. or help make sure there are places? How many, while they can, set up the legalities of decision making for their loved ones? Why can't we say, this is what you SHOULD do! You owe it to your family to help manage your own illness too.

How many times do we have to hear about Co-Q10? Out of 365 days... exactly how often does talking about it help you? So why is a break-away session about it and the few other things all that important?

For the moment... HD is an emotional based disease... for everyone. We have to have standards and parameters that reflect our emotional needs. We are not drawn to a community who is being drawn to listen about Co-Q-10. Maybe we need to offer the the ability to discuss the tough stuff. The best answer can't be "call the cops"... because absolutely no one took any responsibility early to see doctors... get treated... and the potential sufferer had made no plans or given no permission to anyone to help manage various scenarios.

The problem is we have been given the tools .. doctors, social workers, volunteer organizations. However no one had any idea that the tools are not self- automated robots who preform well without the craftsman using them. If we could gather with more incentive that directly affects us TODAY... then we would want to be "here" today. And if all of us could have some self determination in what is said and people actually understand why we say it.. even if it feels counter-intuitive... we will get somewhere. It almost seems like people want to make HD a "feel good" experience when we gather. And yes we do want to feel good... but for the right reasons at the right times. Walking for a cure has it's place... but it's not gonna help for long. It's one nice day one time a year. HD feels good that day... but not so much tomorrow. The game plan can't be ... wait for the cure. That's not a game plan at all. There are lots of tough issues we could be tackling for today and tomorrow, and if the cure comes... then great! It's ok to have the plan and the thinking set for people who miss that boat though. I don't tell my kid don't worry about HD... a cure is coming. Who can't handle that news? If it doesn't come for him.. what should he be doing? How will he have a better wife than I was husband?.. How will he be a better husband than T was a wife? What can he know and do to not be so damn scared? Every situation should have a management technique... and not be addressed with catch phrases.. PC statements and ... as a last resort, ignorance... because there is no roadmap.

Too much time is spent on trying to lend comfort... and not enough to preventing the need of it. I think people will show up for what they need. The hope and comfort road is used up.. poor us... but a cure is coming. More of us are ready to be smart rather than brave about the "unknown". If it's unknown.. it's just because people won't talk about it. Nothing is unknown.. mostly just unspoken. Or... we can keep saying... "it's the disease... not the person". But people only show up one time to hear that one.

Too many times have I heard "Remember it's the disease, not the person". But how do you know who a person is when all you have ever known is the disease. It is guilt that holds me to him, and it is the guilt of wanting to run away keeps me from reaching out to help the greater good. It is not easy to step up to help the masses when you feel like you are failing your own family.

I want a big fat manual a "what to expect when you are expecting...hd"

I want to know the specifics of how to plan ahead, how to ensure I will be taken care of if hd overcomes who I am as a person and I find myself alienated and alone. I want to know how to care for someone who has made no plans and doesn't care for your care. I want to know how to survive with hd and then once I have mastered that I will put some hope in a cure.