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, January 5, 2012

"Change is good as long as you don't have to do anything different." Maxine

ALS demands me to adjust to ongoing changes. Sometimes I accept it and other times I fight it. I was happy to have a power chair as I wanted to get around. I gave up my car without argument as I didn't want to injure anyone including myself. Now it gets harder. I surprised myself when I balked at learning how to use speech devices--somehow I thought delaying the process was going to make my voice last longer. How silly was that!? Denial is a restful state. When it was evident that I had to give up the 'Sit to Stand' lift I got angry at my arms. It didn't improve their strength by the way--just caused further frustration. Surprise surprise. The BiPap(breathing device), I accepted as I figured out it was a good idea to keep breathing--and it was. I cry easily when something doesn't work but I have learned to laugh when my body doesn't work. I will continue to whine off and on--ignore me. I will manage just fine. We all need to give ourselves permission to grieve our losses and lean on our carers, friends and family to renew our strength. As I experience more weakness and eventually total paralysis, I will not lean on you, I will rely on you.

1 comment:

Alice said...

praying for you, dear karyn, i don't even know that i could do what you are doing. God bless you! still praying and believing for a cure to ALS.