Karyn's View

Life is so stressful some days, so I take a nap.

2012-01-28T14:50:00.000-08:00

Height doesn't matter between friends

2012-01-24T18:53:00.000-08:00

A beautiful photo by my friend Libby in Dumfries(Holywood) Scotland

2012-01-16T17:36:00.000-08:00

First snow in the city

2012-01-16T17:08:00.000-08:00

Lovely short storm today.

Thank you

2012-01-14T14:33:00.000-08:00

I want to send a special thank you out to all my friends, family, and Caregivers who once again helped me celebrate the season. I couldn't have managed without you. A special thanks to Tess, one of my caregivers, who helped my friends decorate and undecorate (my own word).

And of course an ongoing thanks to those who visit, do finances, make phone calls on my behalf, repair what I crash into(my brother Ken is 'Mr. Fixit), shop, send notes/emails/cards and good wishes. My life would be VERY difficult without you.

Yummy apple spice cake

2012-01-07T14:26:00.000-08:00

A delicious final touch, the glaze adds a hint of extra flavor and an attractive sheen to this coffee cake.

Ingredients:

For the cake:

1 3/4 cups all-purpose flour
1 1/2 tsp. baking powder
1/4 tsp. salt
3 tart cooking apples, such as Granny Smith or
Braeburn, 1 lb. total, peeled, cored and
coarsely chopped
2 Tbs. strained fresh orange juice, lemon juice
or apple juice
1/3 cup firmly packed light brown sugar
1 1/2 tsp. ground cardamom
1 tsp. ground cinnamon
8 Tbs. (1 stick) unsalted butter, at
room temperature
8 oz. cream cheese, at room temperature
1 1/2 cups granulated sugar
1 tsp. vanilla extract
2 eggs

For the vanilla glaze:

3/4 cup confectioners’ sugar, sifted
2 Tbs. condensed skim milk, warmed, plus
more as needed
1/2 tsp. vanilla extract

Directions:

Preheat an oven to 350°F. Grease and flour a 9-inch round springform pan or square baking pan or baking dish (see Note).

To make the cake, in a bowl, stir together the flour, baking powder and salt.

In another bowl, toss the apples with the juice. In a small bowl, stir together the brown sugar, cardamom and cinnamon. Add to the apples and toss to coat. Set aside.

In the bowl of an electric mixer fitted with the flat beater, combine the butter, cream cheese, granulated sugar and vanilla and beat on medium speed until light and fluffy. Add the eggs, one at a time, beating well after each addition. Add the flour mixture in 2 or 3 additions and beat well until smooth. Using a large rubber spatula, gently fold in the apples just until evenly distributed, no more than a few strokes. Do not overmix. Spoon the batter into the prepared pan and spread evenly.

Bake until the top is golden brown and a toothpick inserted into the center of the cake comes out clean, 60 to 70 minutes. Transfer the pan to a wire rack and let cool for 5 minutes.

Meanwhile, make the glaze: In a small bowl, whisk together the confectioners sugar, the 2 Tbs. milk and the vanilla until smooth and pourable. Adjust the consistency of the glaze by adding more milk, a few drops at a time, if needed.

Remove the sides of the springform pan, if using, and place the cake on a wire rack set over a piece of waxed paper to catch any drips. While the cake is warm, drizzle with the glaze. Let the cake cool to room temperature. Cut into wedges or squares to serve. Makes one 9-inch cake.

Note: If using a glass baking dish, reduce the oven temperature to 325°F.

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

2012-01-05T14:39:00.000-08:00

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.

2012-01-01T12:11:00.000-08:00

2011-12-27T21:07:00.000-08:00

What can I say? Some cats think they are angels.

2011-12-22T17:09:00.000-08:00

Merry Christmas to all

2011-12-19T17:05:00.000-08:00

Whistler

photo by M.G.

School chums

2011-12-19T16:14:00.000-08:00

When I was 15 I went to St. Margaret's School in Victoria with Margaret and Cammy. When they visit me we recall all the laughs and good times we had--and the good times we are having now. It's great fun. It seems so long ago --and it was --50 years ago!!
Roses are Red my Love by Bobby Vinton and Chubby Checkers(The Twist) blared on the radio. We were carefree kids who had no idea what life had in store for us. We were fortunate to grow up in a country safe and peaceful--and families that loved us. We all count our blessings--and there are many.

My party

2011-12-14T16:40:00.000-08:00

I had a Christmas party and my hat sang and I danced. It took me 2 days to recover--but it was worth it.

Is Santa here yet?

2011-12-08T17:33:00.000-08:00

2011-12-02T09:33:00.000-08:00

Click here

Emily

2011-11-24T17:52:00.000-08:00

"After a good book I need a nap," says Emily-- Anne's cat.

2011-11-21T17:46:00.001-08:00

ALS Responds to Modified Parkinson Drug

By Kurt Ullman, Contributing Writer, MedPage Today
Published: November 20, 2011
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Action Points

Explain that patients with amyotrophic lateral sclerosis (ALS) showed signs in a small study that an investigational agent derived from the Parkinson's disease drug pramipexole might slow the loss of muscle strength and function.

Note that treatment failures showed a significant dose-dependent relationship.

Patients with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, showed signs in a small dose-ranging study that an investigational agent derived from the Parkinson's disease drug pramipexole might slow the loss of muscle strength and function, researchers said.

Malcolm

2011-11-20T12:50:00.000-08:00

He is doing well and back in Kamloops at the Rehab ward. THANKS for all your concerns and prayers. He is walking with a walker and talking well. I expect he will be home for Christmas.

Now that's a close-up.

2011-11-20T12:33:00.000-08:00

Remember the Granville St. photographers? Remember the hair?

2011-11-16T11:49:00.000-08:00

This is Steven and Karyn out for an afternoon of shopping.

Oh to be that young again. Sigh---

Since some have been asking, yes it's me in the picture at 23 yrs., and Steven is about 5. Steve is the son of a good friend of mine. I always liked to buy him clothes...and he tolerated it well. Unfortunately, he recently died from secondary lung cancer.

2011-11-13T17:39:00.000-08:00

2011-11-12T10:08:00.000-08:00

Out for a stroll/ride with my niece Kristina

2011-11-08T09:25:00.000-08:00

life

2011-11-05T14:41:00.000-07:00

Andy Rooney on life

I've learned...

That the best classroom in the world is at the feet of an elderly person.

That when you're in love, it shows.

That just one person saying to me, "You've made my day!" makes my day.

That having a child fall asleep in your arms is one of the most peaceful feelings in the world.

That being kind is more important than being right.

That you should never say no to a gift from a child.

That I can always pray for someone when I don't have the strength to help him in some other way.

That no matter how serious your life requires you to be, everyone needs a friend to act goofy with.

Everyone must take time to sit and watch the leaves turn. ~Elizabeth Lawrence

2011-11-03T11:17:00.000-07:00

I'm still alive and causing trouble.

2011-10-29T17:20:00.000-07:00

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

2011-10-29T17:08:00.000-07:00

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?

2011-10-27T15:21:00.000-07:00

Click here.

Is that my Grampa?

2011-10-22T20:55:00.000-07:00

2011-10-17T11:55:00.000-07:00

Do you feel like working today?
Me neither!

Update

2011-10-16T10:29:00.000-07:00

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

Loss of a special man

2011-10-15T15:18:00.000-07:00

Steve Mark David Griswold

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

2011-10-09T11:02:00.000-07:00

"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

2011-10-07T15:30:00.000-07:00

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

update

2011-10-05T13:45:00.000-07:00

Malcolm is still in an induced coma.

We are hoping for the best.

Malcolm in ICU

2011-09-29T19:32:00.000-07:00

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.

2011-09-18T12:28:00.000-07:00

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

2011-09-14T13:27:00.000-07:00

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

2011-09-10T10:52:00.000-07:00

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

OUCH!

2011-09-06T11:34:00.000-07:00

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

Woe is me--again.

2011-09-05T14:49:00.000-07:00

2011-09-05T14:47:00.000-07:00

2011-08-24T18:19:00.000-07:00

Researchers Discover Underlying Cause of Lou Gehrig's Disease

2011-08-22T19:35:00.000-07:00

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."

2011-08-14T10:58:00.000-07:00

Beautiful Sunday

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

I'm alive!

2011-08-03T21:55:00.000-07:00

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.

2011-08-03T10:55:00.000-07:00

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.

A walk along False Creek

2011-08-01T12:24:00.000-07:00

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.

2011-07-22T11:38:00.000-07:00

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

2011-07-17T19:22:00.000-07:00

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

2011-07-09T18:24:00.000-07:00

CLICK HERE for video

Grandma Wants to Die With Dignity

2011-07-06T17:37:00.000-07:00

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

Snooping around local gardens with my camera

2011-07-03T19:23:00.000-07:00

Update on my health

2011-06-29T19:58:00.000-07:00

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

2011-06-26T17:37:00.000-07:00

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

2011-06-26T16:11:00.000-07:00

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

A blissful afternoon

2011-06-21T08:35:00.000-07:00

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

2011-06-20T12:53:00.000-07:00

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

2011-06-16T20:34:00.000-07:00

Friends

2011-06-14T10:38:00.000-07:00

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

Don't Worry, Be Happy

2011-06-12T09:52:00.000-07:00

“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

2011-06-12T09:42:00.000-07:00

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

2011-06-02T11:23:00.000-07:00

A favorite of mine I shot from my den this winter

2011-05-30T17:08:00.000-07:00

My friend

2011-05-30T14:54:00.000-07:00

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

2011-05-29T18:21:00.000-07:00

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

2011-05-26T17:40:00.000-07:00

I dream

2011-05-24T15:59:00.000-07:00

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

2011-05-21T20:13:00.000-07:00

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

Excellence in Engineering

2011-05-21T19:00:00.000-07:00

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

2011-05-15T11:06:00.000-07:00

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

2011-05-09T22:12:00.000-07:00

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

2011-05-04T12:51:00.001-07:00

Cavalia--a wonderful show.

2011-05-03T14:18:00.000-07:00

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

2011-05-02T20:58:00.000-07:00

"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

2011-04-28T16:47:00.000-07:00

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

I remember it well.

2011-04-28T13:43:00.000-07:00

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

2011-04-26T17:08:00.000-07:00

Some times you just need some peace and quiet

2011-04-21T11:51:00.000-07:00

A Spring outing with my camera.

2011-04-13T13:34:00.000-07:00

Update

2011-04-09T20:42:00.000-07:00

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

2011-04-04T17:56:00.000-07:00

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.

2011-03-31T20:51:00.000-07:00

UBC Engineering students design an eReader

2011-03-30T18:21:00.000-07:00

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)

2011-03-26T15:19:00.000-07:00

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

A reminder

2011-03-25T15:05:00.000-07:00

"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.

2011-03-21T21:37:00.001-07:00

March 21st I'll celebrate 65

2011-03-18T17:01:00.000-07:00

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

2011-03-17T15:49:00.000-07:00

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

2011-03-12T17:34:00.000-08:00

Silence Is Golden? I ponder the proverb.

2011-03-10T20:01:00.000-08:00

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

2011-03-10T14:55:00.000-08:00

2 weeks ago from my window

2011-03-09T15:57:00.000-08:00

Bagpipe school--when I was young

2011-03-02T12:08:00.000-08:00

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.

A sad time--2 Canadian inspirations passed away

2011-02-27T09:15:00.000-08:00

ALS continues to take away some wonderful people. Both Corrine and Joel were inspirations to me.

Joel was from Abbotsford and helped me pave the way for tracheostomy if I so choose.

Corrine was from Hamilton and did so much for an example to others--she walked the talk of what can be done despite ALS.

They were both in their 50s and had so much to give--they died way too soon.

We need to find a cure!

2011-02-26T17:10:00.000-08:00

Promises of spring on Granville Island

2011-02-23T17:19:00.000-08:00

by Ann Quindlen

2011-02-21T17:43:00.000-08:00

"Something really, really bad happened to me, something that changed my life in ways that, if I had my druthers, it would never have been changed at all. And what I learned from it is what, today, seems to be the hardest lesson of all. I learned to love the journey, not the destination. I learned that it is not a dress rehearsal, and that today is the only guarantee you get. I learned to look at all the good in the world and to try to give some of it back because I believed in it completely and utterly."

2011-02-20T20:08:00.000-08:00

“One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.”

Canadian ALS Awareness Campaign

2011-02-17T20:59:00.000-08:00