Update on my health

I haven't updated my disease progression for sometime since it's rather boring and not exactly uplifting. However it's my style to be open so here is my report.

My voice continues to weaken but still not bad on good days. My breathing is holding at 41% and I've been given a BiPap and a new mask. The resp. doctor wants me to use the BiPap machine during the night, but so far I only use it 2 hrs. per day. I may regret my stupidity.

I have my carers feed me as I can't lift my arms high enough to manage a fork or spoon.This also prevents me from finding a comfortable position to type. My reach distance is about 10 inches.

My neck muscles have weakened and my head falls to the right. I have a strap that can be cushioned on one side but it doesn't work well and I find it hot. Next week I'll get a neck collar and try that.

This sounds like a Waaa Waaa column but trust me it's not. I do get in a bit of a slump some days but I always bounce back with the help of self-talk and my friends. All in all, I'm doing well and eager to go on adventures in the sun. I'm hoping to go on a sail with the handicap program at Jericho this summer. I still have goals--I haven't given in to ALS. I never will.

Celebrating 2 yrs. with my wonderful Care Aides

I'm so privileged to have the finest care from these RCAs. Tess and Regina have cared for me through the good times and the rocky times. I thank them for their dedication and I thank Nurse Next Door for sending them to me.

I See The Light

A beautiful song from "Tangled" by Mandy Moore and Zachary Levi.
Click here to listen.

A blissful afternoon

I went to the Market today and sat by the boats. So many European tourists shopping and enjoying the sunshine. I love to "people watch". After purchasing a lime green pot for my yellow orchid, fresh local strawberries, a cantaloupe, and a gooey cinnamon bun, I meandered through the park admiring all the wild roses and came home with sun kissed cheeks. A blissful afternoon.

To die or not to die

Whether you live alone or have a family, finances weigh heavily on the decision to prolong your life with ALS.

When you need paid care, a special vehicle, etc., etc.,---unless you are very wealthy, have excellent insurance, or a retired partner to care for you, the idea of a tracheostomy becomes an impossible dream. 24hr. care is mega expensive and the governments of Canada and U.S. show no mercy.

Email ALS friends who have passed away

Friends

I am only as strong as the coffee I drink, the hairspray I use, and the friends I have.

Don't Worry, Be Happy

“Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...”

Isak Dinesen

Happy Dance

I'm well and do the Snoopy happy dance every time the Canucks win.