A favorite of mine I shot from my den this winter

My friend

Many have asked if the bird was real--yes it was. I guess he was trying out his wings and he couldn't make it back to the nest. My blanket was a soft place to land.

Vancouver/Richmond ALS Walk

to everyone who came out in the chilly weather, to all those who donated and of course to the baby Starling who had a chat with me... and thank you to the niece who donated the prize I won. I too will remember your Aunt who passed away from ALS.

"Monster Tulips" photo from my patio by Kristina

I dream

I reached my goal for the ALS walk on May 28th

Thank you to everyone who contributed. I raised $3,130. Yahoo!

Excellence in Engineering

I'm so proud of these UBC engineering students who won first prize for their eReader project. It was my privilege to meet four wonderful people who carefully listened to my needs and developed an eReader with a stand that I can use and enjoy. As an ALS patient who is gradually losing my ability to do "normal" activities, I welcome any device that enhances my lifestyle. Now I can read a book with the click of a mouse while relaxing in my power chair.

Be your true self

Let the world know you as you are, not as you think you should be, because sooner or later, if you are posing, you will forget the pose, and then where are you? ~Fanny Brice

ALS Awareness Month

May is ALS Awareness Month in U.S. and June in Canada.

I grieve for my PALS living with ALS and the many I met online who brightened my life for a brief time and then were taken by this disease that shows no mercy.

Some are so young and have children who struggle to understand their impending loss. Some are elderly and have difficulty managing any electronic devices to compensate for loss of speech and mobility. Regardless of age, it is an ongoing struggle.

Please talk to others about Lou Gehrig's Disease /ALS and support the 40,000+ living with this disease in North America. Donate to your local chapter and/or walk in one of the many Walks for ALS.

We need your support. We need a cure.

A spring afternoon

Cavalia--a wonderful show.

I went to Cavalia--http://www.youtube.com/watch?v=np8WJ_2TbLA--watch here.

Fortunately for me, it was a treat from a good friend.

I would recommend it to anyone who appreciates the bond between trainer/rider and horse.

Here is a few photos from my adventure.

Nancy O'Dell and ALS

"ALS is a master of destruction and I can testify to that first hand. My beautiful mother had ALS and the courage and grace she showed throughout her whole journey with ALS was nothing less than extraordinary," said Nancy O'Dell, the Emmy Award-winning Entertainment Tonight co-anchor (see video). "So how do you go up against a master of destruction? Well the only way is to create a masterpiece of compassion and hope and that's what MDA's ALS Division is giving people with ALS."

Our Last Summer

http://www.youtube.com/watch?v=Z6YqC3D0GMo&feature=related

I remember it well.

I would rather sit on a pumpkin and have it all to myself, than be crowded on a velvet cushion. ~Henry David Thoreau

5th anniversary of our writing club

Some times you just need some peace and quiet

A Spring outing with my camera.

Update

I'm fine--just been busy.

I got new real lamb's wool elbow protectors to stop the abrasions on my arms and had geometric gel padding put in my power chair back to alleviate a spinal pressure point.

I'm trying a new medication to minimize the shaking so I can raise a fork or spoon to my mouth without flinging the food far afield. I hope it helps.

PROP brought me a full face mask for my BiPap that I can wear glasses with. This enables me to fall asleep watching T.V. It is a new model, but seems to work well.

Thank you for all the birthday wishes, cards, cakes, and gifts for my 65th. I was spoiled and loved every minute.

ALS Walk Richmond/Vancouver

I’m participating in the WALK for ALS and I’d like to ask for your support.

ALS is a fatal neuromuscular disease with no known cure, cause or effective treatment. The WALK for ALS supports provincial ALS societies and their programs to help people with ALS and their families, and the ALS Society of Canada’s investment in breakthrough research…help and hope!

It is my hope that you will consider sponsoring me by making a secure online donation using your credit card. Click on the link below to donate now...

http://my.e2rm.com/personalPage.aspx?SID=2935100&Lang=en-CA

Thank you for your support!
Karyn

P.S. Here are some additional ALS facts:
* Two to three Canadians die of ALS each day
* Approximately 3,000 Canadians currently live with ALS
* In at least 90% of cases, ALS strikes individuals with no family history of the disease
* Between 5-10% have a familial form of ALS, devastating families for generations
* ALS can strike anyone, regardless of age, sex or ethnic origin
* While the usual age of onset is between 55 and 65, many younger people, often parents, are afflicted
* Nearly 90% of people with ALS died within 5 years of diagnosis. While some live longer, others die within a few short months
* ALS affects the whole family
* ALS is a costly disease - emotionally, physically, and financially.

For more information on how YOU can become a walker yourself, please visit www.walkforals.ca

Richmond-Vancouver Walk

Location: Garry Point Park, Steveston

Date: Saturday, May 28, 2011

Walk Registration: 9:00 AM

Kick Off: 10:00 AM

Estimated End: 1:00 PM

Contact:
Vandhana Misri
(604) 880-0561
richmondvancouverwalk@alsbc.ca

My 3 cakes--I'm still celebrating.

UBC Engineering students design an eReader

I'm taking part in a project with UBC Engineering students. They have designed a moveable mount for an eReader and have adapted it for ALS.

It can be operated by a mouse, switch, or button. I'm using the mouse. I can scroll, turn pages, and choose to read the newspaper or a book all by tapping the mouse. Presently, I cannot hold a book and turn pages without struggling and feeling VERY frustrated. Also, I can no longer use a touch screen as my fingers are shaky and I do not have reliable dexterity.

This design allows me to relax in my power chair and read.

I love it!

I am hoping to get permission to continue using it.

Thank you ALS Society, ALS Centre, and UBC for making this happen.

Charlene- I've never been to me (with lyrics)

http://www.youtube.com/watch?v=QhQWND9jKDA&feature=related

A reminder

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma--which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. "
Steve Jobs

I made it to 65 and I'm mature as ever.

March 21st I'll celebrate 65

On Monday I'll reach a milestone that I never expected to reach. Many people get depressed about becoming a senior and receiving their gold card. I welcome it as a bonus.
In 2004 I had my first symptom of ALS when I jumped from a raised garden bed and my legs collapsed. For 3 years my symptoms increased--weak legs, out of breath, staggering at night(and no I wasn't drinking), terrible balance, falling, drop foot, cramping, pain after walking, etc.. Doctors had no idea what was wrong. I was incorrectly diagnosed with peripheral neuropathy in 2006. Finally in 2007 I insisted on seeing a new neurologist. The news followed after testing--I had ALS.
Now in 2011 I'm at the average for length of time for survival. However, I know others who died after 1 year and some 10 yrs.
I'll aim for my 70th birthday and see how I do.

"No matter what age you are, or what your circumstances might be, you are special, and you still have something unique to offer. Your life, because of who you are, has meaning."

- Barbara de Angelis

Bravery

Some times a good meal and a warm place to sleep is all that matters

Silence Is Golden? I ponder the proverb.

As with many proverbs, the origin of this phrase is obscured by the mists of time. However, the meaning is simple: "Some times not saying anything is preferable to speaking." I ask myself, if silence forever has richness that I'm yet to experience.

As many of you know, I'm losing my voice. It is slurred and slow but still clear enough for most.

Eventually it will disappear and I will only make sounds with no meaning. Speaking will be from a machine and other communication will vary from a letter board to finger signals to a buzzer. Will I find this silence golden? Will you? I expect I'll experience frustration but overall will fare well. Why?

Simply because I've always enjoyed being alone. In solitude I have learned most of what I know.

I want to define solitude as a positive state--not loneliness. As May Sarton said,"Loneliness is the poverty of self; solitude is richness of self."

Never stop talking because I am silent, talk more and let me learn.

The song: Silence Is Golden You can listen to it here for old time's sake.

Pre-spring sunset

2 weeks ago from my window

Bagpipe school--when I was young

I'm second row from the front, first one sitting down on the left(dark dress, white collar). My sister Cheryle is sitting next to me.