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

Tuesday, December 14, 2010

My World

Many have asked how I'm doing. Those who see me all the time have a pretty good idea, but those who haven't seen me as much, have no idea. So, I decided to sum things up on my blog.
I'm losing my voice but can still talk with a weak enunciation. My vocal cords are somewhat paralysed and since they stretch across my larynx I cannot make all sounds. Also my tongue is weaker so I talk slowly. The tone has deepened -- I sound like George Burns(if you're old enough to remember him). Although I'm 24/7 in a wheel chair I can move my right leg--not so much my left. I can't move them in bed and I find it very frustrating. I use an over head lift to get in and out of bed and a portable lift to get me into my lounging chair. My Care Aides feed me some of my meals as it's very hard to hold a fork or lift my arms. I drink coffee or wine through a straw--still tasty. I have a feeding tube for water, and a V-Pap machine to use when I'm short of breath. My brain is fine.
Often I go out(with friends or Care Aide) to get groceries, shop, have a sandwich, get some fresh air, etc. I can still hold my head up but the neck muscles are weakening. I can deal with most everything because I was smart enough and fortunate enough to invest for my retirement, therefore I can afford "live in" care.
The greatest frustration is losing the use of my hands and arms. Just try existing with your hands behind your back for 2 hours and you'll understand.
My spirits are usually very good and I laugh a lot at life and myself. It's a wonderful way to cope.
Well, I think that's enough to give you some idea of where I'm at.
Life is still good. I tire easily but it doesn't stop me from throwing a party once in awhile.
Thanks to all of you who keep me smiling.

1 comment:

Alice said...

yes, i remember george burns and graycie allen (however she spelled her name) - OK, here's a good george burns' quote: "If you live to be one hundred, you've got it made. Very few people die past that age." how's that? :)

thanks for filling me in on where you are physically. i know that mentally you are still the same 'karyn' i met on this blog a long time ago. do you know when you started your blog? i know i can look it up, but i'm just wondering. anyway, the update helps me understand where you are. i don't like it, but i understand better.

well, it's dentist day for me. not so much fun, but at least i still have teeth :) have a great day!