Monday, July 10, 2006

Things are getting harder for my brother. He fell again recently, and this time it was pretty bad. I don't really want to talk about it here. I'm very protective of my brother's dignity. He's been so positive through all of this. I know that it gets hard for him, and he only lets a few people know that, but otherwise he acts very strong which helps give his family hope. I think it helps keep his kids (especially his 13-year-old daughter, who is really the only one old enough to comprehend what's going on) from thinking about it.

I really respect my brother. It's too bad that it's taken something like this to make me really think about that. He helped teach me how to walk (he's 38; I'm 25). Now I have to watch as some disease takes that ability away from him. Is anyone ever prepared for things like this? It's hard to know what to think. In fact, I feel bad for not having things to think about. I feel like I should feel worse or be thinking about it more often... I feel like I should be doing more, but I don't know what I can do. I don't know what anyone can do.

So we just go about our lives as normal as we can. I think that's comforting to him. I think it's comforting to all of us. I'm sure it's always in the back of our minds, but we're just trying to make things easier for him. No one deserves this wicked disease.

Sometimes I really wish I had someone to talk about this with. I don't really have anyone around with whom I feel comfortable discussing this, and because of that I don't discuss it. Sometimes I'm afraid that I forget about it too often BECAUSE I don't talk about it. So I end up feeling bad that I'm not talking about it... but who am I going to talk to? This isn't easy.

If you can, please do visit my d'Feet ALS walk page. Due to the generosity of my friends, I met my original $250 goal really quickly, so I recently raised the goal to $300, and now I'm pretty close to that too. Team Kenny actually has hit its goal recently too, so I'm guessing they'll raise that. The walk is toward the end of September. Lots more teams have added themselves. I'm much more excited about the Columbus support now, but I'm very upset about how little has been done to cure the disease. I don't think it's a matter of priorities (though it certainly might be) as much as it is a matter of technical difficulty. (note: this is a big reason why I have major problems with people who have "moral" objections to embryonic stem cell research and SCNT (if you don't know what SCNT is, you're not allowed to have "moral" objections and you need to sit on your hands and bite your tongue right off you worthless lump of uneducated flesh). All of that being said, religion seems to be really helping my brother cope, so I thank it for that) So if you can visit and donate a few bucks (even $5 or $10 really adds up quickly), that'd be great. Otherwise, I understand. I'm just happy to be spreading around the awareness.

That's what hard too... I don't really know that the d'Feet walk is going to make a major impact on the research that may help my brother pull through this... It may help improve his comfort of life. However, after having a close relative go through this, I really don't want anyone else to have to worry about this awful wicked disease. People need to be aware. We need to research.

And it's nice that a high profile figure like Stephen Hawking has increased the awareness of the disease; however, people don't realize that he has a very weak strain of ALS. That's the big reason that he's survived this long. Even with his popularity which has afforded him many more resources than the average ALS patient, little has been done in his case to actually slow the disease. In most people's cases, the disease acts much more quickly. It's rare to see double digit years after diagnosis. People need to know that.

Anyway, I'm done ranting. I just needed to get some of that off my chest. It helps (me) a little. My brother is on vacation right now with his family. I hope he gets much needed rest and relaxation. (that being said, I think we're all very grateful of his company for supporting him by continuing to support his job during this tough time. As much as he doesn't need the extra stress from work, I think he'd be feeling much worse if he wasn't working)

1 comment:

The Patient Connection said...

Research Blog on Locating Support for Motor Neurone Disease Sufferers


We at The Patient Connection are currently running a research blog or online discussion on the subject of support and information resources for Motor Neurone Disease Sufferers. As well as the impact of the condition more generally

In particular we are interested in your experiences during and after diagnosis.

We would love it if you could share your story or just post useful resources for patients, carers and family members

If you would like to join us please go to

http://www.thepatientconnections.com/blog.asp?bid=&uid=35

Thanks and please remember your opinion does count.

Best wishes

Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com

PS Please email me if you have any queries