Welcome to my blog. I have had ALS for 10 years now.

Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Thursday, February 10, 2011

Tears and fears

Someone said in jest, "I hate those people who are always happy."
It made me think about the dark side of my disease and how I don't talk about it on my blog. The fears and tears.
There are days when I worry. "What will I do if I can't stand any longer?" I feel helpless.
I've learned to reach out and ask--not harbor my concerns. I ask Care Aides, OTs, ALS pals online, friends, doctors--anyone who I think may have some suggestions. That's where I got the knowledge about a "sit to stand" lift. For me it has become one of my favorite aids. Can you imagine the joy of standing upright and feeling tall once again? Just to stretch my legs is wonderful.
I used to fear the day when I lose my voice. How could I butt in like usual when using a speech machine? Aha!--problem solved. I can ring a bell or push the call button on my power chair. Now some of my friends talk so much when we get together I'll probably just learn to relax and become a better listener. I can hear some of you saying, "yeah right, like that is ever going to happen." And you are probably right, I'll be ringing that bell!!
So, don't ever think I'm always in denial(but it is a good way to spend some days), I have fears and tears like anyone else. However, I always find solutions to my problems by asking the circle of many wonderful friends and professionals in my life.
I can't change the fact that I'm going to die, I can only try to get the most out of the days I have.

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