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.

Happiness

Oh how I wish!!

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.

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."

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.

Best Friends

"Best Friends" -- original painted by Virgilio Tojetti-- repainted over 100 years later by

Richard De Wolfe.

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.

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!

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.

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

PS I've been good

HEAD AND SHOULDERS

Please donate to ALS Canada so we can find a cure.

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!

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.

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.

November 11th

The picture says it all

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.

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.

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!” 

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.

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.

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.

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.

My costume

I need a volunteer to dress as a witch and push me door to door. You need a large golf umbrella as well as your broom.
If I hadn't eaten as many kitty treats I would be easier to push. Also I'm getting worried about getting stuck in the neighbor's cat door when I sneak in at night to eat their cat's leftovers. My owner can't figure out why Fancy Feast Lean Cuisine isn't working.
It's fun to baffle humans. They think they're so smart! If I seem a little strange when you come to pick me up it's because I found a bag of catnip under the sink last night. I was bored so I ate the whole thing.

Charlie Brown

Happy Halloween everyone! Don't eat too much chocolate and let me know if you see the Great Pumpkin.

I can sit at the table again

This is my new chair for dining at my table. I needed arms on the chair for getting up and down, swivel to turn toward my walker or table, castors to move myself close or away, and height adjustment to lower for fitting under table end. I, or I should say friends, placed a small carpet under the chair so I don't push away and scoot into the wall. It all works like a charm. Two friends put the chair together today amidst fits of laughter. I supervised and read the directions. It was a hard job.

Big challenges

As you can tell by the picture, I took on challenges much bigger than me at an early age. Now I'm much older and I'm tackling ALS. Thank heavens I'm taller, tougher and wiser.

Shopping in the sunshine

I had a superiferous day! A friend helped me go shopping for a new rain/wind jacket-- one that zips from the bottom as well as the top. This will make sitting in my power chair on blustery days more comfortable. We were successful at Taiga Works.
The day was bright with sunshine and beautiful autumn leaves. I had my chair fully charged and was up for the adventure along Broadway. My friend showed me all the ramps into coffee shops and the elevator to Home Depot, HomeSense and Winners. We searched for bargains, laughed about most everything, and got a healthy dose of vitamin D.

Is this cool or what? Only in the UK

Cynthia Nugent: BC Achievement Award

Congratulations to my friend Cynthia!

Author Bill Richardson and illustrator Cynthia Nugent receive the 2008 Time to Read: BC Achievement Foundation Award for Early Literacy from foundation board member, the Honourable Iain Black at Panorama Heights Elementary in Coquitlam, BC. 

Richardson and Nugent received the award for The Aunts Come Marching, a sing-a-long story about a marching procession of musical aunts who drop in on a family for an unexpected visit. The Time to Read Award is a national children's book award for an author and illustrator of a book suitable for kindergarten students. The winning book is distributed to all BC kindergarten students and the author and illustrator each receive $7,500. For 2009, the deadline for submissions by Canadian publishers is March 15, 2009.

Read all about it!

Warren Buffet

Equities will almost certainly outperform cash over the next decade, probably by a substancial degree. These investors who cling to cash now are betting they can efficiently time their move away from it later. In waiting for the comfort of good news, they are ignoring Wayne Gretzky's advice: "I skate to where the puck is going to be, not where it has been."

Good Times

Life is pretty laid back these days. I'll try to spice it up and wiggle my toes more often.

Even the neighbor's cat is praying for a cure.