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

Friday, July 31, 2009

Misty sunrise July 31


The mornings are the best--cool and beautiful.
This was 6AM today.

I celebrated a friend's birthday at the Cactus Club for lunch. Three of us caught up on news events in our lives--grand children, wheel chairs and gardens.
We were treated to a quiet table in the atrium. I miss their delicious Bandera salads but it's not worth risking a choking fit on the lettuce.
I love food so it's easy for me to substitute. Today it was a Cajun chicken club.

Thursday, July 30, 2009

Heat Wave

It's too hot!!
The cooler is melting--and me!

Wise decisions

Some times we have to make wise decisions or we pay a big price.

Tuesday, July 28, 2009

My planters

Now that I have care workers, I can have a few flowers.
A friend bought the planters and plants. With a couple of helpers, they were carried in and put on my balcony.
I miss my old garden so these are a splash of enjoyment.
The flowers are loving the warm weather more than I am. Spring and Fall are my favorite seasons.

Sunday, July 26, 2009

We learn from our friends

Fireworks

What a show last night--not the fireworks so much but the lightning. I sat and watched for an hour. It was spectacular, topped off with a rainbow to the east.

Saturday, July 25, 2009

Up Up and Away


The weather is so beautiful--I feel like flying into the blue.
I remember my Dad flying over our house and tipping the wings of his plane to wave. I took flying lessons in my thirties and thought I might fly as well, but when they asked me to stall the airplane and start it again, I just about lost my cookies. That day was the last time I flew. My 747 days were not to be. LOL.
I now fly on my power chair at 3 mph.
Not quite the same, but great fun just the same.

Yesterday I went to the park with friends for a picnic. In the evening a friend cooked a prawn dinner and we watched "Doubt". A VERY GOOD DAY.

Wednesday, July 22, 2009

ALS check-up

I'm feeling a little tired after my check-up, so I thought I'd just relax in my favorite spot.

The physiotherapist gave me some exercises for my hemi hip replacement and my sore lower back--which you all know I love to do! LOL. I also learned some techniques to transfer.

The social worker at the clinic is helping to get me some assistance with care costs. Statistics say I have about 2 years but some live 6+ years with a vent and  without some assistance I could be broke long before I die. If you're waiting for an inheritance--save your energy--I'll probably leave debt instead. This is all tongue in cheek as I have black humor. It's a family trait.

The OT is helping me with research on environmental controls on my "soon to be ordered" power chair. I hope to have the chair wired for a computer plug in and then I can use the joy stick for a mouse. It will be a BIG help as I lose more movement and spend more time in the power chair.

The doctor wasn't as concerned about my choking as I was. We will wait for my respiratory results in late August to determine if there is any need to consider a feeding tube. If my breathing score drops below 60% the PEG would be on my medical agenda. It appears to be premature at this time. Yahoo! My left leg swelling(oedema), is not alarming to the doctor. My carers massage it daily and the circulation improves so we will continue with this plus elevation.  

All in all they are pleased with my hip healing and my average to slow ALS progression.

I got a free ride from ALS transport to and from the clinic. A very nice benefit. My friend Lyn met me there and took excellent notes. I have great friends.

Today I was out and about with my care worker. It was a beautiful day and we celebrated her birthday.

That's all for now. 

Saturday, July 18, 2009

Laryngeal dysfunction in Amyotrophic Lateral Sclerosis


I'm having more and more trouble with my voice projection and swallowing. As the muscles weaken I lose voice function and tend to choke on such things as lettuce and cereal. Eventually I will have no speech that you can understand and I will have to take nourishment through a feeding tube. It isn't the end of the world but another hurdle to deal with.
It feels like I have a mouthful of cotton when talking and choking is scary as you can aspirate, get pneumonia and need to be vented.
Like the picture, accepting something different with a positive attitude is the trick to moving on with grace.


Friday, July 17, 2009

Wednesday, July 15, 2009

Eagle sculptures

This eagle is on Granville near Chapters. There are many throughout the city brightening the streets for visitors and locals. I snapped this picture when out for lunch.
I still have pain in my hip-- the long hours in my wheelchair aggravates it some days. Other than continued voice weakness and further loss of co-ordination, I'm doing well. I have great care workers.
I'm trying to cut down their time spent here but my balance is so unpredictable. A live-in caregiver is the answer--financially--but I haven't adjusted to the idea as yet.

Tuesday, July 14, 2009

Wouldn't it be nice

"Wouldn't It Be Nice" by the Beach Boys.
A golden oldie that fits the picture.

Monday, July 13, 2009

The days of youth

I came across a photo of Cheryle and me taken in front of the rose trellis I mentioned in a previous post.
Mom loved to dress us up. It was a struggle to get me out of my blue overalls but somehow she succeeded. 
We had so much fun playing in our yard. Wagons, dolls, scooters, bikes, puppies and kittens all played a part in our amusement. Life was so carefree. It's not quite the same now--but still beautiful.

Friday, July 10, 2009

Wild Roses

These roses are surrounding one side of Granville Loop Park.
I have fond memories of the older varieties since my Mom grew Betty Prior roses on a trellis near our back door.
It's always interesting what you remember from childhood and what you can't recall at all.

It's another beautiful day and I will be joining friends for a coffee and sandwich at Starbucks.

Monday, July 6, 2009

Jack Orchard dies at 41




Jack Orchard, Lou Gehrig's disease, ALS
FILE: TUESDAY, DECEMBER 11, 2007 -- Jack Orchard and his girlfriend, Kristen Williamson, share a moment as they search for music on the computer on Tuesday at their home in Richmond Heights. Orchard wrote his memoir about his life with ALS. Even though he can't move his body, he uses a device that tracks his eye movement to navigate the computers. He also started a charity, Extra Hands for ALS, that help match student volunteers to assists people with the disability. (Huy R. Mach/P-D)
By Harry Jackson Jr.
ST. LOUIS POST-DISPATCH
07/06/2009

Jack Lampl Orchard died Saturday (July 4, 2009) after a long battle with ALS, also known as Lou Gehrig's disease. He was 41.

"He fought ALS; he never let it beat him," said Mark Jaffe, a lifelong friend. "He was always a fighter. On our high school football team, he was the captain in our senior year, even though he wasn't the biggest or the strongest. That's just how he was. Always a fighter."


Mr. Orchard, a successful international entrepreneur, is best remembered for forming two foundations to fight amyotrophic lateral sclerosis: the Jack Orchard ALS Foundation, which according to friends and family raised more than $1 million for ALS research; and the Extra Hands for ALS Foundation, which recruits and trains young people across the country to help people living with ALS.

With sadness we lose an author and ALS fighter



Losing My Voice! Living with Motor Neurone Disease (ALS)
...is an inspiring and emotionally moving story of courage and determination.

One year after moving from Auckland, New Zealand to Sydney, Australia to start a new career Barbara Williams is diagnosed with motor neurone disease MND, an incurable, degenerative, terminal condition also known as amyotrophic lateral sclerosis ALS. Once diagnosed with motor neurone disease, there is currently no hope of a cure. The best one can hope for is to slow the progression of the disease.

Sunday, July 5, 2009

Friday, July 3, 2009

My new shower



Thanks to my brother, Ken, I now have a new shower. My caregivers roll me in on my commode. I'm squeaky clean once again!!

Thursday, July 2, 2009

Wednesday, July 1, 2009

Warm out there