Leslie

Hello Charly, Welcome to this site. You will find lots of useful info and good friends. It seems you are progressing slow, or at least slower than I. I hope you stay positive. Greetings Leslie

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Hi Leslie,
Thank you for contacting me.
I haven't updated my profile. I need to update my "progress". I just haven't.
I am in denial so I feel pretty okay every day.

I have always been the type who enjoys self improvement.
Now (delusionally) I feel like if I am creative, healthy, gentle, and keep moving and praying, and not let it scare me, something will happen to save me.

When I read too much about it, I feel overwhelmed. That's not me. That can't possibly be me, I think. Like I'm watching someone else's TV movie of their life story.

I do have some speech issues. (I used to do voice overs for TV commercials for a living).
And my walking is crazy.

But I am holding onto hope that I will persevere.
I've decided to eat organic as much as possible.
I've decided to work out (in some capacity) daily.
As for all these medications? I am lost. So much research. And I don't want my life to be only about this issue.

I'm trying home remedies.
Vitamins.
Hot and cold showers for circulation. Heating pads. Lots of water.
Stretching in the tub. Prayer and meditation.

Today I will "dance and move" to music and see how that feels.

When I read about the inevitable, or talk to medical people who tell me to enjoy this moment because that's what is left for me, I reject it. I'm about hope and progress, and that is what enjoying the moment is for me.

Charlie Roberts

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Hello Charlie,

Thank you for your reply. I can understand your attitude. I also am kind of in denial. I am sure I won't die. (but in the meantime I don't make any plans anymore for the future and I am afraid I won't be there at my steph daughters marriage next year).

I think the good new is: you don't have to bother to much about medicine. I think nothing really helps, The speed of your progression is probably more influenced by genetical factors. Working out Though does seem a good idea. I have read the forum thread of you with clipped wings e.a. about working out. I think it might help. On the other hand I think muscles deteriorate because ppl stop working out, but more ppl stop working out, becouse it becomse to hard. For instances I told my doctor I decided to stop walking, because it made me too tired. But actually it is the other way around: I just could not walk anymore. It costed me so much effort that I was exhausted after a few steps. Now two month later I can't walk at all, but I think: that's why I had to stop, because the muscles where too week allready. Dancing for practicing your muscles is of course great. I am playing the clarinet, which is a great way to practice my diaphram.

Good healthy food is of course a good idea, specially with enough fibres. For the rest I really believe that it does not make any difference which medicine you take or leave. A lot of trials have been done into vitamines, Q10, creatine, Everything seemed very promising, but the trial showed: it does not make a difference. On the other hand: if you are so unlucky to have a specific gene mutation you will die very quickly, or whith an other mutation will live very long. That makes really a big difference. So don't worry too much about what you eat and which medicines you take. I am following the forum thread about stem cells, but I don't believe that it will help one bit. But who knows? I am participating in the Lithium trial. A few month ago there was a big hype of people who were certain that would give the cure. Now it is LD Naltrexone (that's the word I think). Tomorrow they will run after something new. I put my hope entirely on good scientifical research. I maybe wrong of course.

In the meantime: you don't have to worry about your disease. Just try to live a life as happy as possible. The future is something for tomorrow and may not even happen.

O this was a long reply. It's was just for me to vent my feelings. Thank you for listening.

Good luck,

Leslie