Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Sunday, November 30, 2008

Good Ol' Maxine

Saturday, November 29, 2008

Another loss



Every few weeks we lose one of our online ALS community. It brings tears and questions. How much must one suffer? Do religions have a right to dictate how terminally ill patients die? Who dares criticize any person's choice of exit? Are we all emotionally able to deal with the same debilitating condition? If all of you who are reading this were sitting at a round table we would get many robust opinions. But we're not in the shoes of those who choose to exit early--and hopefully never will be.
Last Sunday, a man with ALS, part of our online community, went to his neighborhood park and ended his life. His wife loves him with enough strength to understand and accept his desire for eternal peace. I admire her.
Don't think for a moment that I have any plans for such action. This is not why I posted this. Rather to stimulate conversation about choices and the lack of them.
R.I.P. my friend. I shall never judge.

Friday, November 28, 2008

How Much is That Doggie?



Patti Page--click here

Christmas in Killarney




Irish Rovers--click here


The above painting shows the Blarney Mills store

"The Great Irish Shopping Experience can also be discovered in our Killarney store. This is centrally located in the Outlet Centre next to the train station and carries a wide selection of Waterford crystal and Belleek china, ladies contemporary clothing, jewellery and linen. Customers can browse around the classic Blarney Woollen Mills store. Blarney Woollen Mills in Killarney is well worth a visit."

Killarney Outlet Centre, Killarney, Ireland.

Wednesday, November 26, 2008

Sitting pretty

Is this pretty or what? Best decor I've ever placed on my coffee table. The Geek Squad just left and I'm now wireless and ready to go. The learning curve for the new glass multi-touch trackpad(never had a laptop before) and the new programs will be steep for little ol' me but you who know me well, will have faith.
Now I can sit with my feet up as the doctor ordered and still harass you all. No escape 'from' the wicked. I'm smiling from ear to ear.
And yes, all ye writers, I have no excuse but to get down to business. I'll start my novel tonight! 

I Have A Dream


The sky has always fascinated me. Do you remember as a child sprawled out on the grass trying to find shapes in the clouds?
My Dad had a small plane and I recall him flying over our house and tipping his wings as a way of waving at us. In my 30s I took flying lessons but soon changed my mind after the first lesson that required stalling the engine and restarting it. Do you have any idea how fast that sucker drops? I just about lost my cookies. At night my Mom would point out the Big Dipper and the Milky Way. And so the sky still remains a magical mystery for me. In this picture there is a small dot lower centre--the rescue helicopter coming in to land on the hospital roof. I watch it from my office study window. I'm waiting for it to rescue me. LOL.

Tuesday, November 25, 2008

I Am What I Am



A beautiful song that says it all.

Monday, November 24, 2008

Bobby Brannigan jumps


Bobby is an all time advocate for ALS and a regular contributor on the ALS forum, PatientsLikeMe. Watch this act of bravery and trust.

Unconditional Love


Unconditional love is something I've received from so many. I will never say life is better after my diagnosis of ALS but on one level,  it is richer. I can't count how many times I've been escorted, assisted, listened to, encouraged and downright spoiled. Friends, strangers, family and e-mail pals offer caring with no expectations for reward. This is what I classify as unconditional love. I'm one lucky puppy.

Sunday, November 23, 2008

Happiness

Oh how I wish!!

Friday, November 21, 2008

Treading water

There are days when treading water is all many of us do. Keeping afloat becomes the goal.
Other days seem soft and simple. We breeze through 24 hrs. as if someone took away the heavy
cloak we wore the day before. We breathe easier, get things done and feel a magical lightness. I cherish these days and have been very fortunate to experience many of them. I wish everyone of you soft and simple days.

Thursday, November 20, 2008

We lost a great one

Artist Peggy Chun died today surrounded by family. She leaves behind a legacy of familiar and dear watercolor scenes of the islands and inspiring memories of how she lived her life.
Born in Lawton, Okla., Peggy moved to Hawai'i in 1968. She taught school and owned a successful Christmas ornament company. When her twin sister and noted artist, Bobbie Segler, died of ALS, Peggy was inspired to paint. Her work is featured in fine art galleries in Hawai'i and in private and corporate collections across the globe.

Using a spell board this May, Peggy gave these words to graduates:
"Remember, student graduates, that THE ONLY SECURITY IS COURAGE! Think about these five wonderful words, anytime fear starts creeping in. I want you to go for life at its fullest! And enjoy it for the marvelous adventure that it is."

Wednesday, November 19, 2008

Two little beauties


This is a recent picture of my sister and me posing for a photo in our green velvet dresses and black patton Mary Janes. I suspect that dress might have been the last one I ever owned. LOL.
If you note the car in the background it must be that our Father was an antique collector and I've forgotten. We're not THAT old. 
Those were the days before we got two brothers and another sister. I quite liked being the youngest. However I had to learn to give up my position and be one of the oldest. C'est la vie.

Coming Soon--A new shopping mall on my corner


After years of negotiations the work has finally started at the corner of 6th and Hemlock. I'm looking forward to it as the rumour is there will be a coffee shop, bakery, and bookstore. Could I ask for more in paradise?

Lou Gehrig's Disease and War

For desperate vets, victory and anger

By Jason Blevins and David Olinger
The Denver Post Updated: 11/19/2008 02:02:54 AM MST
Army veteran Randy Saubert takes grandsons Kalev, right, and Ethin to a Colorado Springs park Tuesday. Saubert logged 38,000 miles hauling supplies across the Iraq desert in 1991. Today, he isn't sure what he came into contact with that caused him to develop Lou Gehrig's disease. (Karl Gehring, The Denver Post)

They were told they were crazy. Statistical anomalies. Whiners. This week - after enduring 17 years of baffling and incurable ailments they blamed on exposure to nasty chemicals and untested anti-nerve-gas agents- veterans of the Persian Gulf War were told they were right.

Colorado's veterans of Operation Desert Storm feel justified after a congressionally mandated panel this week announced that the mysterious and often maligned "Gulf War syndrome" was in fact a legitimate medical condition. The panel concluded the syndrome was most likely associated with a combination of anti-nerve-gas pills and exposure to pesticides.

Tuesday, November 18, 2008

Best Friends


"Best Friends" -- original painted by Virgilio Tojetti-- repainted over 100 years later by
Richard De Wolfe.

Monday, November 17, 2008

Peak 2 Peak Tower



The Peak 2 Peak chair from Whistler to Blackcomb has been completed. This is one of the towers when under construction.
An amazing feat and not for the faint of heart.

Sunday, November 16, 2008

The dancing penguins needed some music




Steve Martin is a talented guy and he's here to help this little fellow play the banjo. Click on    Hit it!

Friday, November 14, 2008

Carol Ships

Once again the carol ships will be out for December. I have watched them every year since 1984. From my house on Burnaby Mountain I saw them for 3 nights during the season, on their way to Deep Cove or Belcarra. Now, since I've moved to an apartment overlooking False Creek I see 2 or 3 boats every evening as they sail up to the Science Centre dome. To add to the spirit of the season,
my sister and friends are coming on Dec. 6th to set up my Charlie Brown tree and sort through some of my Christmas ornaments. I can't have much on display as I've become clumsy(more so than usual) and have increased hyper reflex. Now this is enough about Christmas until December--I promise.

Thursday, November 13, 2008

Dear Santa





Santa,
Please watch the new commercial from the ALS Society of Canada and then make a donation to help find a cure for this terrible disease.
Love,
Karyn

Don't get me going!



This guy is passionate about issues. I adore him because he talks with an ALS accent but doesn't let that slow him down.
You go Donald!

Wednesday, November 12, 2008

Getting Mail

I've always loved getting mail. There's something about receiving a note via post that seems so decadent compared to email. Perhaps I should have become famous so I could collect fan mail--bags and bags of it. Well, I suppose I still have time. I best get to work.

Tuesday, November 11, 2008



NEW YORK — Deborah McGee’s legs started feeling weak a little before the halfway mark at Sunday’s New York City Marathon. Her breathing labored and her body ached. But it wasn’t enough to stop her.

After 25 competitive races, the marathon was McGee’s toughest challenge and her last.

McGee, 50, who is from Stafford County, was diagnosed last year with Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, which destroys the motor nerve cells that operate the muscles and leads to paralysis. For McGee, who said she loves the feeling of completing a marathon because it’s a distance not many can accomplish, Sunday’s race was a chance to experience the thrill of a competitive run one final time — before the disease spreads to her legs.

“The fact that I was able to do this was a gift,” said McGee, who crossed the finish line of the 26.2-mile marathon in five hours and 45 minutes with tears streaming down her face.

Monday, November 10, 2008

November 11th


The picture says it all

Saturday, November 8, 2008

Dorothy's 86th birthday




We had a little party to celebrate Dorothy's birthday. My friends cooked fresh crab, wild rice, and veggies and we drank fine wine.
Unfortunately I can only have a half glass of wine as I can't walk if I have more. The gathering helped me get back some confidence after my fall the other morning. It's always such a set back when something happens to remind me how weak I've become. Hopefully the rain will hold off tomorrow and I'll get down to Meinhardts(a special deli) to pick up a roast beef sandwich for lunch. It always feels good to get out on my power chair in the fresh air.

Thursday, November 6, 2008

Woe is me

One of those days



I fell out of bed this morning--first time. I realized I didn't have my neighbors' phone numbers in my cell phone--big mistake! I had my alarm on but didn't really want the paramedics called--although next time I will. After a 1/2 hr. of using my head I positioned my walker and with the remote adjusted the height of my bed--and I struggled and struggled to get my butt on the bed.


So what did I learn from this:

1. Never swing out of bed until I put the back up and get a good position.

2. Have my neighbor's and other phone numbers programmed into phone

3. I'll have to figure out how I can put some gripping socks on in bed as my legs are weak so my feet slide on the carpet. My firm slippers are there but I'd need to be sitting to get them on--not flat on my ___!!

4. Have a physio help me recognize what I CAN'T do. For instance, I had no idea how weak my torso was. On my knees I felt like a bobble doll from the waist up. If I was smaller I'd look cute on someone's dashboard. Also my knees were in excruciating pain--no muscle to protect them from the burn of carpet. My toes don't grip any more so I couldn't get my feet positioned properly.

5.Thank heavens I was cool headed--no panic and used my knowledge of strength and positioning to raise high enough to plunk my rear on the bed.

6. It may be time to have a care giver come more often to prevent me from wearing myself out in the day.

7. I can't take pain medication in this weakened state unless someone is here. I get too weak--like last night.

8. Living alone with this disease isn't safe. I'll now rotate my Share the Care Group to have someone call me every morning at 8 to make sure I'm O.K.

PS I'm not hurt, just a bruised ego. Thank heavens both my care giver and my friend Lorraine are coming here today. I'll whine and have them help me set up things to circumvent this problem in the future.

Wednesday, November 5, 2008

Drew




SmartNav for Drewbie

By Ricky Buchanan • October 27, 2008

Drew is five years old and has spinal muscular atrophy (SMA). He has a fantastic website which his Nana puts together on her Mac - Drewbie’s Website has heaps of photos and movies about his life and triumphs.

Drew uses SmartNav to access his computer, using a switch for mouse clicks and moving his hand - with a reflective ring on it - to move the mouse pointer. He was featured in the last SmartNav newsletter and there’s a video on his website of Drew using SmartNav to play computer games with his brother.

Best of luck with your adventures, Drew!

- Ricky Buchanan, ATMac credit to  http://atmac.org/

See his website under song/video

WOW! What a ride.

I finally put my money down and ordered a new MacBook Air. Weighing under 3lbs. my weakening hands will handle it just fine.
It is an amazing machine and I'm like a kid waiting for Christmas to arrive. It should be delivered by Nov.15th.
Yes, I may die broke, but as they say,
“Life is not a journey to the grave with intentions of arriving safely in a pretty well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and loudly proclaiming ... WOW! What a ride!” 

Tuesday, November 4, 2008

First Snowfall

We had our first visible snowfall on the night of November 2nd. I still get excited when I see snow. I've loved it all my life.
This picture is of "The Lions" or "Two Sisters" as named in a Tyee legend.
I can only see their tips or cat's ears as I call them, from my study but they are beautiful just the same.

Poetry

I have always loved the poetry of Robert Frost. The one I posted under Song of the Day is my favorite, followed by Stopping by Woods on a Snowy Evening.  The second conjures up happy memories of my childhood and my horse "Sugarfoot." The last line is, "and miles to go before I sleep." That's how I feel about my life now. Enjoy the video.

Monday, November 3, 2008

Dementia?

Some times I forget where I put things. 

Our Canucks


Our Canucks are exciting but my heart misses number 16. I'm forever a Trevor Linden fan.

Sunday, November 2, 2008

Custom for a Wheelchair

Today I could have used this car. The sun came out this morning so I decided to outsmart the weather man and go for a ride up Granville to the bookstore. Well, as usual, there were too many shiny things grabbing my attention so I stayed longer than planned. Big mistake. When I got to the cash desk I saw dark clouds looming in the sky. When I got to the exit I saw umbrellas and pouring rain. I was told never to go out in the rain as my battery could short out. Yikes!
I huddled under the Art Store awning and sipped my hot coffee I purchased at Starbucks hoping the inclement weather wouldn't last. Finally I decided to make a run for it. Carefully navigating my chair at top speed, hugging the store fronts, I blasted for home. Every soggy leaf that spat up into the air was a possible "short out my chair and turn me into a Christmas tree" signal. But I was a lucky ducky in the rain and got home safe and soggy--and guess what? Yep. The sun came out as soon as I was in my apartment.

Saturday, November 1, 2008

Complain complain





I don't complain very often(friends may disagree) but this last bout of back and hip pain is more than annoying. I'm O.K. in the day after stretching and doing some exercises the physio gave me--but the nights are killers. I walk like the little guy above. I've been told it's ALS and as you lose torso strength you seize up at night. Some patients are on narcotics. Well, I beg to differ the reason for my pain and don't wish to start narcotics. The pain is specific so I'm asking for an ultrasound or MRI. I may have another vertebra collapsing as I do have Osteopenia verging on Osteoporosis. However, I'm not going to dwell on it until I have a medical diagnosis. Worry interferes with having fun.
While I'm being negative, I've got fingers that are starting to curl and must get some bands to keep them straight, nerve pain in my foot and I bite my cheeks at night--all ALS related.
I can still eat, talk, shower independently, and I don't drool. There are more positives than negatives.
That's my list for this month. LOL. I'm coping with them and still able to get out and spend money!! I just didn't want you to think I was wonder woman--although I see some resemblance-- don't you? Be nice.


The fireworks were very loud last night so I hid where no one could see me.