Great Grandparents

This is my Great Grandmother Ethel Newport and my Great Grandfather Robert Newport(my Mother's Grandparents). The picture was taken in England in 1934. Robert died in 1939 and Ethel in 1945--just one year before I was born. I don't know a lot about them but I do know they lost their 19 yr. old twin sons in World War 1.

A trip to Bloedel Conservatory in the rain

My brother and I dined at The Seasons in the Park for lunch. It was a great day!

A sad day in Berlin

Lori Mai died from ALS. She was only 32. A beautiful, talented singer/person lost to this horrid disease. Will the toll ever stop?

"It Feels Like Home"

It has been awhile since I sat down at the computer and written anything of substance. I suspect my busy schedule(LOL) and my deteriorating body have been in the way. Since I started taking hydromorphone last week, for my painful leg, I've been sleepy and non-talkative. However, I stopped the drug yesterday and my chatty, but slower self has re-emerged. Your peace and quiet no longer exists!

As many of you know, I love the rain, so when you feel down because of the weather, just visualize how happy and snug I am. It probably won't cheer you up but at least you can feel these days are joyful for one of your weirdo friends.

I ventured out today to the bank and to Chapters. I stopped with Tess(my carer) to sip a warm drink at Starbucks coffee shop. Something about the Christmas decorations, the brisk wind and new snow on the mountains made me think of the song from "My Sister's Keeper," "It Feels Like Home." The book/movie is a sad story, but when I snuggle down in my Easy Chair with my comforter wrapped around me and the fireplace on, I'm in touch with the love I feel from both good and not so good life experiences.

My time with a terminal illness hasn't changed the old me, but my appreciation for the basic needs in life has magnified. On this cold, rainy, windy night I give thanks for shelter, heat, and food--and you.

ER visit

I twisted my leg with the hip replacement and since I couldn't bear weight on it I went by ambulance to ER.

I'm healing slowly--on drugs--but hope to be back in action soon.

We shall remember

Even when I'm angry--I'm cute.

ALS Facts

FACTS ABOUT ALS

ALS is also called . . .
Amyotrophic Lateral Sclerosis
Sclérose latérale amyotrophique
Lou Gehrig's Disease
Maladie de Lou Gehrig
Motor Neuron Disease (MND)
Maladie de Charcot

ALS is a rapidly progressive fatal neuromuscular disease.
Amyotrophic Lateral Sclerosis
Nerve cells degenerate
Muscles are paralyzed
Generally the intellect & senses are unimpaired

ALS can strike anyone.
Male or female
Any ethnic origin
At any age
Some have been diagnosed as teens
Usual onset is in middle age

80% die of ALS within two to five years of diagnosis
Some will die within a few short months
Some people live longer

Some cases are hereditary.
Less than 10% are familial ALS
ALS is not contagious

Approximately 2,500-3,000 Canadians currently live with ALS.

Every day two or three Canadians die of ALS.

ALS is the most common cause of neurological death

ALS strikes the whole family.
90% of home care is shouldered by family caregivers
ALS is a costly disease - emotionally, physically and financially

ALS Society Unit provides quality care
Information and referrals
Support for the person with ALS and their family
Equipment programs
Advocacy

The ALS Society of Canada funds excellent and relevant research into the cause of ALS
Research is our best hope
Partner with us for a cure – Call 1-800-267-4257

It's a lonely road

ALS is a peculiar disease. The journey is filled with twists and turns. Nothing is precise or predictable--even death. Some live one year, some live ten.
Recently, two of my pen pals have become "locked in"(unable to communicate). This news has brought tears. I grieve the loss of their friendship and their loss to participate in life. People some times forget that although we have new communication techniques, wonderful caregivers, ALS support personnel, family and friends, we still may be shut out of life by sudden progression. If the fingers don't move we can't type, if we lose our voice we can't phone, if our eyes don't move due to total paralysis, we can't use "eye gaze." However, we always stay alert in our still body. We hear, see and feel emotions.
It's a scary and lonely road to travel. I'm one of the lucky ones--I have all of you to walk with me.

For my friends and family

Your Song

Rainy Days and Mondays

Rainy Days and Mondays--The Carpenters

Red Lake

My brother took this photo on Red Lake. I thought it was beautiful so I decided to post it here for all to enjoy.