A ride on the Canada Line to new Convention Centre

If you haven't been down to the new Convention Centre, it will be a treat. The views from the walk-around deck are beautiful.
I took the Canada Line from Olympic Station to the Waterfront. I was accompanied by 2 friends(my tour guides) and loved the day. It was sunny, warm and blue sky. The only glitch was when I held my sandwich at the side of my power chair(to prevent spilling mustard on my shirt) and a Golden Lab came by--and yes, you guessed it--slobbered all over my delicious Clubhouse. Lucky for me, I had eaten half before he tasted it.

I'm the fashion queen of 6th Ave.

Ask and you might receive

I was out with my Care Aid today to make some purchases at Staples. After buying a phone system with a head set to make calling easier, a fat pen to decrease difficulty when signing cheques, an easy grip case for my iPhone with speech program(not purchased as yet), and a pink high heel tape holder(don't ask!), we wandered over to Boston Pizza. Alas, it wasn't open so we waited in the beautiful lobby of the office building next door. As we "people watched" I saw a well dressed man hand a bright yellow/gold cape to a woman friend. I quickly powered over to him and said, "Excuse me, but where did you purchase that? I've been looking all over for one to wear on my wheel chair." He hesitated, and then said, "Oh, a gift for you." He reached in his bag and pulled out another and handed it to me. I was so-o-o pleased. It fit perfectly and covered my chair controls--ideal if I should get caught in the rain.

I spoke with the woman who received one as well, and asked who the charitable man was. "President of Polygon Properties," she replied. You see, you just never know who you might cross paths with--furthermore you never know when you might receive.

Now about the pizza--barbecued chicken and very tasty.

I can do it!

I do exercises with my care workers to maintain flexibility. As you can see in the picture, my right arm is good, my left arm only lifts half way(muscles have weakened and some atrophy is obvious). By someone lifting the arm for me, my shoulder doesn't seize. These exercises are called "Range of Motion"(ROM) and are recommended for all ALS patients.

Ocean and Boats

There is something romantic about the ocean and sailboats. It must be that dream of sailing away into the sunset with your perfect partner onboard-- no worries on the horizon. Of course if you've ever owned a boat it's very different. Storms, engine problems, sea sickness, all tend to destroy the romantic notion. However, I still pause by the seashore and dream. I dream of smooth sailing, candle light dinners, sunny warm weather and the perfect companion. I dream of anchoring in a beautiful cove and working on my novel that will become a best seller. I dream of impeccable health, fine wine, and watching otters float on the waves. I consider myself lucky that I love solitude, meditative time, and to dream. This way there is nothing I can't experience--real or not.

I wish I owned one--maybe in my next life!

I was shopping at the market and spotted this vintage car. What a beauty it was--in mint condition.

The market is getting less crowded as the high tourist season comes to an end. The Fringe Festival has been on and of course there are the weekend buskers trying to earn some money as they entertain with their musical skills. I always feel like I'm on holiday when I go to the market. A good feeling indeed.

It's great to forget how some people see you

Some days are for snoozing

To freeze, let the soup cool completely, then transfer it to 1-quart airtight containers, leaving 1/2 inch at the top to allow for expansion. Freeze the soup for up to 2 months. Thaw overnight in the refrigerator and reheat over medium heat.

Ingredients:

2 Tbs. olive oil

1 lb. boneless beef chuck, cut into chunks

1 large yellow onion, chopped

2 carrots, chopped

2 celery stalks, chopped

2 red-skinned potatoes, scrubbed but unpeeled, cut into chunks

1 can (28 oz.) crushed plum tomatoes, with juices

1/2 lb. green beans, trimmed

2 Tbs. chopped fresh flat-leaf parsley

Salt and freshly ground pepper, to taste

Directions:

Sauté the beef
In a large saucepan over medium-high heat, warm 1 Tbs. of the olive oil. Working in batches, add the beef and cook, stirring occasionally, until browned, about 4 minutes. Transfer to a plate.

Cook the vegetables
Add the remaining 1 Tbs. olive oil to the saucepan and reduce the heat to medium. Add the onion, carrots and celery, cover the pan and cook, stirring occasionally, until the onion is softened, about 5 minutes. Return the beef and any juices from the plate to the pan.

Simmer the soup
Add 1 1/2 quarts water to the pan, increase the heat to high and bring to a boil. Reduce the heat to medium-low and simmer, partially covered, for 1 hour. Add the potatoes, the tomatoes and their juices and the green beans, and stir well. Simmer until the beef and the potatoes are tender, about 20 minutes. Stir in the parsley and season with salt and pepper. Ladle the soup into individual bowls and serve immediately. If freezing the soup, set it aside to cool (see note above). Serves 6 to 8.

Sept. 13th 6:30 A.M.

Some mornings are too beautiful for words. A photo shares the moment best.

Wind Beneath My Wings

Click here for song.

Yummy!

Friends and my Care Giver made New York cheesecake on Thursday. It was great fun watching and eating. I always get the hard jobs!

I tried to save you all a piece but it seemed to disappear from the fridge.

Charleson Park

I had a wonderful day down at Charleson Park(15 min. ride from my home). It was the perfect temperature and all the seagulls, Canadian Geese, ducks and herons were there to entertain us. Tess, my care giver snapped some photos for me near the pond's edge. I didn't dare get too close with my power chair. Something about sliding into a murky duck pond didn't seem appealing.

It was a fun day and I stuck to the speed limit.

What Causes ALS?

What causes ALS?

The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others. An important step toward answering that question came in 1993 when scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS) discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS. This enzyme is a powerful antioxidant that protects the body from damage caused by free radicals. Free radicals are highly reactive molecules produced by cells during normal metabolism. If not neutralized, free radicals can accumulate and cause random damage to the DNA and proteins within cells. Although it is not yet clear how the SOD1 gene mutation leads to motor neuron degeneration, researchers have theorized that an accumulation of free radicals may result from the faulty functioning of this gene. In support of this, animal studies have shown that motor neuron degeneration and deficits in motor function accompany the presence of the SOD1 mutation.

Studies also have focused on the role of glutamate in motor neuron degeneration. Glutamate is one of the chemical messengers or neurotransmitters in the brain. Scientists have found that, compared to healthy people, ALS patients have higher levels of glutamate in the serum and spinal fluid. Laboratory studies have demonstrated that neurons begin to die off when they are exposed over long periods to excessive amounts of glutamate. Now, scientists are trying to understand what mechanisms lead to a buildup of unneeded glutamate in the spinal fluid and how this imbalance could contribute to the development of ALS.

Autoimmune responses—which occur when the body's immune system attacks normal cells—have been suggested as one possible cause for motor neuron degeneration in ALS. Some scientists theorize that antibodies may directly or indirectly impair the function of motor neurons, interfering with the transmission of signals between the brain and muscles.

In searching for the cause of ALS, researchers have also studied environmental factors such as exposure to toxic or infectious agents. Other research has examined the possible role of dietary deficiency or trauma. However, as of yet, there is insufficient evidence to implicate these factors as causes of ALS.

Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS.

A wee bit tired

Do you ever feel like this?

ALS commercial running on City TV--at last

I'm pleased to see the award winning Canadian commercial for ALS being shown here. It's a shortened version, but good none the less.

It has been on my blog--but worthwhile showing here again CLICK HERE

Miraculous Morning

Mornings inspire me. I took this photo while the sun tried with all its' might to shine through the rain clouds. I often feel this way.

Today my speech is poor and no matter how hard I try the words don't come easily. Then I remind myself to be grateful for what I can do and not ponder too long on what I can't do.

This picture captured the beauty of small rays brightening a dreary day.

I can still click a camera and type so I hope I brighten your day with this photo.

Raising ALS Awareness

This is a video story of one member of ALS Patients Like Me.

People like Sharon are instrumental for increasing ALS awareness. Thank you Sharon.

Click here for video and be patient for video to start.

Wooden boat festival

I went to the wooden boat festival on Granville Island and saw some beautiful crafts. The work that it takes to maintain these boats is truly a labor of love.

It was a gorgeous day in a gorgeous city. How lucky we are to live in this country!

Being spoiled isn't always the best

The rain is coming and my human will make me wear this stupid cape.

Yummy

Easy Blueberry Yogurt Muffins

Ingredients

• 2 cups flour
• 1/3 cup sugar
• 1 tsp baking powder
• 1 tsp baking soda
• 1/4 tsp salt
• 1/4 cup freshly squeezed orange juice
• 2 tbsp vegetable oil
• 1 tsp vanilla extract
• 1 cup of vanilla low fat yogurt
• 1 large egg, lightly beaten
• 1 1/2 cups fresh or frozen blueberries (divided)
• 1 tbsp sugar

Preheat the oven to 400 degrees. Lightly spoon 2 cups of flour into a dry measuring cup; level with a knife. Combine flour, 1/3 cup of sugar, baking powder, baking soda, and salt in a large bowl; make a well in center of mixture. In a separate bowl, combine orange juice, oil, vanilla, yogurt and egg; add to dry ingredients, stirring just until moist. Gently fold in 1 cup of blueberries

Spoon batter into a muffin tray that has been coated with cooking spray. Divide the remaining 1/2 cup of blueberries between the muffins; sprinkle 1 tablespoon of sugar evenly over the muffins.

Bake for 17-19 minutes or until tester inserted in center comes out clean. Remove muffins from the pan immediately and place on a wire rack to cool. Slather with butter and enjoy.

Bette Midler--always makes me want to dance

Boogie Woogie Bugle Boy

An apple per day keeps the doctor away

I visited with Dr. Jeremy Road, my respirologist, Wednesday. My FVC had dropped over 10%. This is worrisome to me as it falls in the "caution" area.

FVC - forced expiratory vital capacity

The volume change of the lung between a full inspiration to total lung capacity and a maximal expiration to residual volume. The measurement is performed during forceful exhalation; the preceding maximal inhalation need not be performed forcefully . The volume assessed is the forced expiratory vital capacity (FEVC), commonly called forced vital capacity (FVC).

When I decrease to 60% I will be put on a wait list for a PEG(feeding tube). Although I may not need it right away, I will eventually, and they don't like to do the procedure when your FVC is below 50%.

I started in 2007 at 110%, then 96%, 85%, and now 73%. I seem to drop 10% every 6 mos. Although the doctor isn't worried, of course I am. I was originally hoping I'd be one of those lucky ALS patients who had strong FVC for years. One has to dream of the positive.

It's rather ironic that I developed ALS as I hate change. With ALS, you just get used to one change and another rears it's annoying head. I'm learning to adapt quickly--but not without frustration and tears. I've had some practise adjusting to change--regarding my clothing size. LOL.

Oh well, I have today, and tomorrow and ?? Living in the moment and enjoying every day becomes more poignant.

Hug your loved ones, phone that old friend, because "you just never know."

I know how she feels.

To Market To Market To Buy A Fat Pig Home Again Home Again Jiggety-Jig

I love going down to Granville Market. It's only a 10 min. drive in my power chair. The fruits, fish and flowers, and almost all things you need are there. Musicians, tourists and locals make it a "people watching" playground. Whether I go with a friend or Caregiver, I always take time to inhale the ocean breeze, watch the boats and of course have a muffin and coffee.

ALS is an expensive disease

$60,000.00 wheel chair van

$18,000.00 per mo. full time care by qualified care workers

$35,000.00 fully outfitted power chair

$3000.00 hospital bed

$6000.00 bath equipment and remodel

$2000.00 lift chair

The list goes on and on and on and on.

Thank heavens for ALS society, insurance and donations. Unfortunately the government doesn't help at all--they say, "Move to a Home." Well, I'm not ready, and I'm not going. I'll wait until I'm broke. The wait may not be long. LOL.

What's in your attic?

I just read a great Blog written by a neuro nurse who has ALS. One of her topics was, "What's in My Attic?" This is an excerpt:

"Hmm, what is in this box? Oh!! No, don't look! Here, give me the tape. This one is stuff that is not for anyone else to see. No, I don't have any deep, dark secrets! It's just stuff I don't want to have to explain. I don't have much privacy in my life now, so I am keeping my past to myself. I don't mean just physical privacy. It is an invasion of privacy to have to have someone else dress you, help you to the bathroom, and all that, but it isn't so much what people see as what they know. I can't hide a stash of chocolate, try smoking pot, spend money, buy a present, try a new hairdo, read a book, change my clothes, or put a tape in the VCR without somebody knowing. 99% of the time it is no big deal, but I would like to be able to read "Final Exit" without anyone knowing, re-watch the Beatles Anthology without my family wondering if I have crossed that thin line between fan and pathetic nutcase, and toss out a whole stack of misprinted pages from the computer without anyone knowing I screwed up! There, it is sealed shut. Just label it "Privacy."

Well, enough of this. Stashed away up in this attic is my identity, all my tomorrows, my control over my own home, my freedom to make choices and come and go as I please and when I please, my ideas of the marriage and kind of love I hoped to have, and my privacy. All lost to ALS. Someone in the ALS group once remarked that the ongoing nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out paralyzed. That is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS you no more than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only the tip of the iceberg. You lose so much more. The attic gets more and more crowded.

Thanks for listening,"

This Ol' House

I love this house on 7th Ave.

Click for song.

Yummy Panini

My niece and I munching down our

lunch at the Wicked Cafe.

We had a great day!

This is what I do in my wheel chair. Can you imagine the laughter?

Click here to hear song.

Rainbow Connection--Sarah McLachlan

http://www.youtube.com/watch?v=Nluv2yWP1JM

Courage

Hope

ALS Message Of Hope

ALS may rob you of your physical body, but it does not rob you of your soul. You live in a society that emphasizes patient autonomy and you will be able to maintain yours. While embarking on a difficult endeavour, know you are not going it alone. Families and friends can come closer, and you will discover new friends. Other people with ALS are available and willing to share in the ups and downs of the journey. There are many dimensions to managing ALS and many professionals available to help you with them. The resources currently available to those affected by ALS are without precedent. You continue to be a valued member of society who can contribute to your family and your friends through the human values in which you believe. You continue to play a role in educating your children and providing support to your family. Due to the intense interest in people with ALS, the options available to you exceed those that were available to previous generations and are expected to increase. While no one has chosen this path, most have traversed it with courage and with dignity. From: ALS and Beyond Carmel Armon, M.D., Loma Linda University, Loma Linda, CA

Another Story

Al Pettit was a Captain with the Mississauga Fire & Emergency Services for almost 33 years before retiring with the goal of traveling with his wife Lee. Shortly after Al retired, however, their plans were interrupted when Al was diagnosed with ALS in October 2003. Suddenly, Al had a new goal – live life with ALS.

“When I was diagnosed I already had an idea of what I had because of research I did on the internet,” says Al. Yet, when his doctor said, “Sorry but you have ALS,” he felt like someone pulled a black hood over his head. “You feel like you will never see daylight the same again.”

With the help and support of family and friends Al began to see that ALS is not the death sentence as he first feared. Al’s positive outlook and perspective on living with ALS has motivated him to get more involved with the ALS community and savour the many joys of life. Joys that include a successful marriage of over 36 years, two beautiful children and the births of his two granddaughters.

Al has promoted ALS awareness in his local community, organized a team in the Walk for ALS, and continues to moderate and provide emotional support through the ALS online forum.

If you ask Al how he lives with ALS, he will say:

“You begin to realize that you can be living with ALS or dying of it. I’ve decided to live with it. One day at a time.”

My hospital roommate in June

When in hospital, this puppy came to visit me every morning while his human Mother taught me how to dress independently. He was very patient and I was very slow. I learned how to put socks on with the help of a gripper wand and how to get a T-shirt on by putting the weak arm through first. Often I get stuck in my shirts as I don't have the strength to untangle them. It's quite a funny sight and I always start laughing--this makes the task even harder!

Thank You

I WANT TO THANK ALL OF YOU--

You keep my spirits up when days are grey.

Also thanks to my many friends and family who visit, send cards, notes and/or phone. I love you all.

You gotta love him

You've either got it or not. This guy has got it.

I'm sure he'll grow up to be a politician--he's got the look that would bring in votes.

Bronze Statues

There is a wonderful display of 6 bronze statues outside the Vancouver School Board Complex. I went to the small park while waiting for Chapters to open and saw them for the first time. They are all portrayals of happy children--and best of all for me, all can be accessed by wheel chair.

Twinkle Twinkle Little Star

Twinkle Twinkle Little Star by Izzy