I'm still alive and causing trouble.

Here I am with my friend Joyce at the new restaurant "Edible Canada" on Granville Island. Joyce had to feed me but no one around us seemed to care. As long as I can laugh I can live.

I devoured a full order of fish and chips.

Malcolm

Malcolm is recovering from his nightmare. He spoke to me on Tuesday!

He has a long way to go on his rehab journey but considering where he was 2 wks. ago--it's a miracle.

Have You Never Been Mellow?

Click here.

Is that my Grampa?

Do you feel like working today? Me neither!

Update

Malcolm is doing better every day, but still in isolation in ICU.

Loss of a special man

Steve Mark David Griswold

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July 30, 1962 - Sept.5, 2011

Steve was predeceased by his father, Herbert Dwight Griswold. Left to mourn are his mother, Irene Griswold (Tom Newell), sister Brenda Griswold, aunt Vivien Swonnell, first cousin Mitzi Swonnell and many other relatives and friends. He suffered intense pain for three months with no diagnosis of cause. On August 22, secondary lung cancer was found. On September 4 he received palliative sedation and 10am the next day he was gone to be with the Lord. REJOICE. Memorial service will be on October 16th at 2:00PM at the First Baptist Church, Nelson and Burrard, Vancouver. Tea will be served following the service. Wheelchair accessible. Parking is available. In lieu of flowers Steve preferred you send a donation to the ALS Society in honour of his friend, Karyn.

Reach--only way you'll get there

"When you reach for the stars you may not quite get one, but you won't come up with a handful of mud either."

Leo Burnett

Good news

My brother Malcolm, wiggled his toes, recognized Ken's voice, and squeezed Kathy's hand. We're feeling hopeful.

update

Malcolm is still in an induced coma.

We are hoping for the best.

Malcolm in ICU

My baby brother is fighting for his life

in VGH ICU after complications following liver surgery.

PLEASE send him healing energy or remember him in your prayers. He needs all the help he can get.

Thank you.

Some times we just want someone to listen.

Such sad news--only 54 and so caring. ALS IS CRUEL.

Karyn-

Wayne passed away on August 7th - Our family would like to thank you for your friendship and support for Wayne.

I have notified patients like me of his passing and they said they would update something so if you know of anybody that is not aware yet - would you be so kind as to pass the word?

Thank you and wishing you the best,

Jim (Wayne's brother)

A tribute to those lost in 911

http://www.youtube.com/watch?v=J3eQmzw6n3k&feature=youtube_gdata_player

OUCH!

I have an upcoming date with the dentist for a root canal. The darn tooth has 3 roots.

Woe is me--again.

Researchers Discover Underlying Cause of Lou Gehrig's Disease

Scientists have long struggled to identify the underlying disease process of ALS (also known as Lou Gehrig's disease) and weren't even sure that a common disease process was associated with all forms of ALS.

In this new study, Northwestern University researchers said they found that the basis of ALS is a malfunctioning protein recycling system in the neurons of the brain and spinal cord. Efficient recycling of the protein building blocks in the neurons are critical for optimal functioning of the neurons. They become severely damaged when they can't repair or maintain themselves.

This problem occurs in all three types of ALS: hereditary, sporadic and ALS that targets the brain, the researchers said.

The discovery, published Aug. 21 in the journal Nature, shows that all forms of ALS share an underlying cause and offers a common target for drug therapy, according to the researchers.

"This opens up a whole new field for finding an effective treatment for ALS," study senior author Dr. Teepu Siddique, of the Davee Department of Neurology and Clinical Neurosciences at Northwestern's Feinberg School of Medicine, said in a university news release. "We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."

Beautiful Sunday

Click here :http://www.youtube.com/watch?v=fPsy5z0QjUo&feature=related

I'm alive!

I've been in a bit of a slump(literally) lately as I have a hard time keeping my body and head upright. I use a support around my neck and tilt my chair back. As you can see by the picture, I'm still beautiful. LOL. However I don't type as much, hence the lack of blog posts. I still love you all and will try to keep in touch as best I can.

It's about time we respect a suffering individual's right to die.

ALS sufferer Gloria Taylor (seated) wants to choose when she will die and have a doctor assist her.

Photograph by: Wayne Leidenfrost - PNG, The Province

A repost but I admire her courage and tenacity--I hope she wins.

Read more:http://www.theprovince.com/news/Grandma+wants+with+dignity/5021752/story.html#ixzz1TzQ94W5W

A walk along False Creek

Anne and I went on a photo excursion and these are a few of our favourites. It will probably be my last summer using my camera.
I am a realist and am aware of my ALS progression rate. However, I will show my Carer or friend what I want them to photograph. I will be the eye and they, the shooter.

The fact is, that to do anything in the world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in and scramble through as well as we can.
Robert Cushing

A writer's view of his disease--ALS

Fred R. Conrad/The New York Times
Dudley Clendinen, who has Lou Gehrig's disease, at his home in Baltimore last week.
http://www.nytimes.com/2011/07/10/opinion/sunday/10als.html?_r=2&src=me&ref=general

Quotes of inspiration

CLICK HERE for video

Grandma Wants to Die With Dignity

http://www.theprovince.com/news/Grandma+wants+with+dignity/5021752/story.html

Snooping around local gardens with my camera

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.