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

Monday, April 27, 2009

Hi everyone,this is an update from Barb,Karyn was transferred to the University of British Columbia hospital (UBC) last Friday,she is currently residing in a transitional unit where she will be able to participate in a rehabilitation program which will prepare her to return home,she believes she'll be there for up to 6 weeks however this week we are hoping she may have access to her laptop and then she'll be able to send you messages and updates,if however she doesn't have computer access I'll post periodic messages so that you're aware of her progress,all for now.
Barb McDermott.

Saturday, April 18, 2009

Hi everyone my name is Barb,I'm a good friend of Karyn's and she has asked me to post this message to let you know that she had an unfortunate fall on Tuesday April 7th and has broken her hip,she had surgery on Thursday the  9th and is now recovering in hospital,she does not have access to a computer but is hoping that may change within the next week,she or one her friends/family will keep you posted.

Monday, April 6, 2009

2hr. ride through my neighborhood






All the Magnolia trees and spring flowers are bursting into bloom. I took these photos while on my warm and sunny adventure.
The cherry blossoms along 7th will be out soon. Today was that kind of day when all seems right with the world--just don't watch the news!

A question for the locals



This picture was taken in 1957. Where is it?

Sunday, April 5, 2009

Patience

Saturday, April 4, 2009

New program for symbol/text to speech

Since my speech is going downhill quickly, I'm always on the lookout for a portable device I can use when the day comes that no one can understand me.
This new program called Proloquo2go will be available in a few weeks for use on an iPod or iPhone. I'll be able to program it for the phrases I'll use most often, and wear it on a lanyard around my neck when out on my power chair. It won't be my voice but a voice just the same.
It will only be a short term answer as when I can no longer push buttons I will need a laptop or tablet mounted on the arm of my power chair. I will control it by head clicks or eye movements. You might find this discouraging/depressing but I look at it as a gift of modern technology. Imagine what it was like for ALS patients many years ago. I can't imagine not being able to communicate. The silence must have been incredibly frustrating. 
Adapt, adapt, adapt--it's the only way to stay in the game.

Roof top



View of restaurant and cafe on Rinascente top floor from the Milan Duomo

Reminds me of the song, "Up on the Roof"

Thursday, April 2, 2009

Hand atrophy/muscle paralysis in ALS



Is ALS a disease of the muscles or nerves?

ALS is a disease of the motor nerves, specific nerve cells in the brain and spinal cord that control voluntary movement. Motor nerves attach to muscles and when the motor nerves gradually degenerate and die, the muscles no longer receive nerve impulses. As a result of the nerve death, the muscles atrophy and waste away. When an ALS patient first notices neurological symptoms, more than half of the motor neurons may already be dead. The body has a remarkable ability to compensate for nerve loss and new nerves grow at the same time other nerves are dying. Eventually, nerve death becomes so pervasive that muscle paralysis is the result.

Beware of identity theft

Wednesday, April 1, 2009

Creativity