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

Tuesday, March 31, 2009

More help for ALS patients

Some of you watched "House" last night and witnessed 'locked in syndrome' also common in late stage  ALS. The technology being developed is incredible. Here is a link to one device already on the market.

Monday, March 30, 2009

Priorities

Sunday, March 29, 2009

Saturday, March 28, 2009

An update on the car in the photo below

" ... the car in the photo is the most desirable make, model and year there is for most hot rodders.
It's a 1932 Ford five window coupe... the first year Ford produced a car with a V-8 engine made with a one piece cast iron engine block.
Before Ford developed the casting process that allowed his factory to make V8 blocks in a one piece casting they were made in three separate pieces requiring a lot of expensive machining which made V8 and V12 engines very expensive to produce.
By eliminating a lot of the machining and the time involved it made the more powerful and desirable V8 equipped Ford cars cheaper to produce and thus available to a much larger market.
The 1932 Ford body was also restyled from it's 1931 and earlier Model "A" predecessor and featured small but significant refinements such as slightly slanted windshield posts, a grill in front of the previously open radiator, and generally more rounded body styling.
Although produced at the height of the depression it sold well and remains today as one of the most admired and sought after early models ever produced by Ford.
Some of us who have always favoured Ford products over others consider some of the 1932 Fords... such as the three and five window coupes... as well as the two dooor sedan and the two door "Victoria" model to be the best looking cars Ford made in that era."
My thanks to Pat Sands for sending this information.

Flashback--1940?



My Mom in her fashionable trousers.
Everyone says I look just like her so I'll accept that as a compliment.
The old garage behind her was my Grampa's workshop. He fixed our bikes there many years later. The hollyhocks and sweet peas in the background, bloomed all summer. I'm not sure about the year of the car--perhaps some blogger friends can help me out.
One of the most popular dance tunes of the time: Glenn Miller--"In the Mood" Click on song title to listen.

Simple pleasures



A good cup of coffee, a card in the mail, a visit from a friend, a flower on your desk--these are the simple pleasures to treasure.

Friday, March 27, 2009

Strangers can often make good company



"Wonderful Wonderful"--Johny Mathis


I meet so many strangers on my power chair--people I would not have spoken to when I could walk. 99% are caring, interesting individuals. We talk about the lack of handicap door openers, the weather and the latest trends in eateries. Small talk perhaps, but a connection that is somehow special. We are warm and open. We have no relationship baggage. It's a brief meeting of the minds and hearts woven into a wonderful conversation.

Thursday, March 26, 2009

In This Life



Foot pain with ALS



When a motor neurone dies completely, the muscle it serves stops working. Other muscles or ligaments can't offer enough support so the joints become painful. In my case, my arch was collapsing. I learned to stretch the ligaments and mobilize the joints to ease the discomfort. Pain medication, gel arch support, and massage provided some relief as well. The feeling is similar to osteoarthritis. You step out of bed and yelp!

Wednesday, March 25, 2009

Tuesday, March 24, 2009

I can hold a fork and open my mouth when I really want to!!



I'm still partying but will need a nap today--and "Yes" that is cream on my nose. You can dress her up but you can't take her out!

Monday, March 23, 2009

I'm hanging in there

Sunday, March 22, 2009

I love the early morning sun



George Harrison sings "Here Comes The Sun"

Saturday, March 21, 2009

In my birthday suit



Bet the title scared you!!
1946-- bald and beautiful.

Happy Birthday to me on this sunshiny day!



I Can See Clearly Now This is a wonderful group with amazing diversity.

I'll be off on my power chair for lunch. You can never celebrate too much!!

Friday, March 20, 2009

Tomorrow is my birthday! Hooray!


With the first day of spring comes my 63rd birthday. Today friends came over to start celebrating and one of my gifts was this hat to wear on sunny days while on power chair excursions. Being almost an albino, a hat is a good thing. Memories of scorching sunburns as a child still linger.
As I continue to party in honor of making it another year, I want to share this song sent to me. Thanks to everyone for shining light on my journey.

Safe at last in a good suit

I figure this is the best bet for me. I won't ever have to worry about falling and hurting myself.  Now, I may never be able to get up but I can roll out the door to get help. 

Thursday, March 19, 2009

Considering an accessible van



I've been tossing around the idea of purchasing a wheelchair accessible van. To help out, a dear friend sent me this idea. It's a lot cheaper than a Caravan or Vanguard, but the biffy is a wee bit small. Perhaps I can have it remodelled? 

Tuesday, March 17, 2009

Monday, March 16, 2009

Augie Nieto on NBC's "Today" show March 18th



Augie and Lynne Nieto, co-chairs of MDA's ALS Division, will be featured Wednesday, March 18, on NBC's “Today” show. Among other things, the Nietos discuss the effects of ALS on their lives, Augie's Quest and their partnership with MDA to find a cure.

Augustine (Augie) Nieto, a prominent leader in the nation’s fitness industry for nearly three decades, received a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in March 2005. Augie, 50, is approaching his role as co-chairperson of MDA’s ALS division with the same ironclad will and determination that catapulted him to entrepreneurial heights in the fitness world.

Chicago River is dyed green every year for St. Patrick's Day



Saint Patrick's Day is celebrated worldwide by the those of Irish descent and increasingly by non-Irish people (usually in New Zealand and North America). Celebrations are generally themed around all things Irish and, by association, the colour green. Both Christians and non-Christians celebrate the secular version of the holiday by wearing green, eating Irish food and/or green foods, imbibing Irish drink (such as Irish stout, Irish Whiskey or Irish Cream) and attending parades.

The St. Patrick's Day parade was first held in Boston in 1761, organized by the Charitable Society. The first recorded parade was New York City's celebration which began on 18 March 1762 when Irish soldiers in the English military marched through the city with their music.] The New York parade is the largest, typically drawing two million spectators and 150,000 marchers. The predominantly French-speaking Canadian city of Montreal, in the province of Québec has the longest continually running Saint Patrick's day parade in North America, since 1824; The city's flag has the Irish emblem, the shamrock, in one of its corners. Ireland's cities all hold their own parades and festivals, including Dublin, Cork, Belfast, Derry, Galway, Kilkenny, Limerick, and Waterford. Parades also take place in other Irish towns and villages. The St. Patrick's Day parade in Dublin, Ireland is part of a five-day festival; over 500,000 people attended the 2006 parade.

Friday, March 13, 2009

Sneaky kitty


Never take your eyes off your lunch!

Life is about choices




Oh how I'd like to ride a bike again. Life is all about choices and it's only when you have your choices taken away that you feel loss. However, I've found that if you can find a way to replace the loss, you can carry on with less grief. When I lost the ability to walk or drive, I got a power chair. My world grew smaller but richer in detail. When I lose my voice, I'll learn to use a speech device. I know I won't like it but I'll learn to adapt and I'll be a better listener.
In this photo I was 6 yrs. young, my big sister Cheryle 9, and my brother Ken, 1. 1952.

Thursday, March 12, 2009

I'm back from dentist



Do you like my new look? It's amazing what a dentist can do these days.

New teeth


I'm getting my new permanent bridge today. Let's hope it looks better than these.

Wednesday, March 11, 2009

Odetta


Odetta sang right to near the end. Here she sings in New York in April 2008 from her wheelchair. She died December 2008. She was part of the folk revival and a human rights activist.

Yummy



Apple Crisp Pie

Ingredients:

Pastry:
* 1 cup all-purpose flour
* 1 Tbs. sugar
* 1/4 tsp. salt
* 6 Tbs. unsalted butter
* 2 Tbs. ice water

*


Filling:
* 4 Granny Smith apples
* 2 Tbs. sugar

*
Topping:
* 3/4 cup sugar
* 3/4 cup flour
* 1/2 tsp. cinnamon
* 1/4 tsp. salt
* 8 Tbs. unsalted butter, chilled

Directions:

Pastry:
In a bowl, combine flour, sugar and salt. Cut butter into small cubes and with a pastry blender or 2 knives, cut butter into flour until pea sized granules form. Add ice water and mix lightly until dough forms a ball. Wrap plastic and refrigerate for 2-3 hours. Roll out pastry and fit into 9" pie plate.

Filling:
peel, core and thinly slice apples; spread slices on paper towels and pat dry. Place in a bowl and toss with sugar. Fill pastry shell with apples, rounding up in center.

Topping:
Combing dry ingredients in a bowl. Cut butter into small cubes, add to dry ingredients and mix with finger tips until granular and crumbly. Sprinkle evenly over apples. Bake for 15 minutes in a preheated 425 oven, reduce heat to 350 and bake another 25 to 30 minutes until top is golden brown and apples are cooked and bubbly. Cover pastry around rim with aluminum foil, if it is browning too fast. Serve warm with whipped cream.

Serves 8.(but not at my place!)

Tuesday, March 10, 2009

Jimmy's Story

Jimmy's Story

Journey of 1,000 struggles began with a single misstep

11/02/03

By STEVE DOYLE
Times Staff Writer, steved@htimes.com
Huntsville Times

Up at 5:30 a.m. and out the door. Hardly a soul on the streets at that hour. He'd hoof from his home in Huntsville's Blossomwood neighborhood to Big Spring International Park and back - three miles.

One morning, Jimmy's right foot slapped the pavement out of rhythm.

That's weird, he thought, and kept going.

It hardly seemed worth mentioning to his wife, Bonnie.

Something's wrong

The end of your life is supposed to announce itself rudely: a suspicious lump, or a throbbing pain in your left arm that sends you scurrying to the doctor.

But this thing festering in Jimmy's foot was as subtle as a paper cut. He shrugged it off when Bonnie said he should go get the limp checked out.

The disease came out of hiding on a steamy Saturday night in July 2001.

On his way to the backyard grill with a plate of ba-con-wrapped fillet mignons, Jimmy's foot crumpled. The steaks went flying, landing with a splat on the garage floor. He tumbled into Bonnie's Lexus, denting the back fender.

He cracked three ribs and hyperextended an index finger.

At his family doctor's office two days later, Jimmy was surprised to find out he couldn't raise up on his toes or rock back on his heels.

Bonnie's heart raced when the doctor referred Jimmy, the healthiest 57-year-old she knew, to a neurologist.

Is he trying to tell us it might be a brain tumor? she wondered.

The next day, Jimmy had to lie stiffly while an MRI machine's powerful magnets scanned his body, creating a three-dimensional image of his brain and spinal cord. But that was pleasant compared to the electromyography test that measures electrical signals coming from the muscles. Dr. Tejanand Mulpur jabbed a long needle into Jimmy's elbows, knees, calves, thighs, biceps and back.

Good news, Mulpur said afterward. It's not a tumor.

For the first time since Jimmy's fall, Bonnie exhaled.

On his way out of the exam room, Mulpur casually pointed to a black-and-white picture on the wall. A baseball player in pinstripes.

"Bonnie, do you know who Lou Gehrig was?"

Unconditional love

Monday, March 9, 2009

Slow Paralysis

Just one toe,
then taking a foot it moves
up the body weakening muscles in its path
settling in a finger--just one.
Not done for the year the voice starts to diminish in its wake
and tremors are seen where calves atrophied last summer.
Now two toes--and two fingers--curled and useless
like upside-down coat hooks continually getting in the way.
A hand no longer able to hold a fork.
Then resting, as if teasing that maybe--just maybe--there will be a remission.
But not to be as throat muscles spasm and a swallow of water evokes a choke.
Wheelchair,
hospital bed,
feeding tube,
breathing device,
computer generated voice,
full time care.
The mind stays sharp. A blessing?
Perhaps.

K.R. March/09

Love



"I Believe" by the Bachelors

Saturday, March 7, 2009

No words needed

Friday, March 6, 2009

Same-o

Thursday, March 5, 2009

Chest cold


I've gone down with a terrible chest cold. Moping around not able to talk without triggering a coughing/gagging fit.
Yes, I'm feeling sorry for myself.

Wednesday, March 4, 2009

One piece of the ALS puzzle


» 2009-03-03 18:30
Italians find ALS gene
'First piece of jigsaw, ' researcher says
(ANSA) - Turin, March 3 - An Italian-led study has identified a gene that regulates the killer nerve-wasting disease Amyotrophic Lateral Sclerosis (ALS).

''This is a first but very important piece of the jigsaw in discovering the causes that trigger this mysterious and crippling disease,'' said lead researcher Adriano Chio' of Turin's La Molinette hospital.

The study, which appears in the current edition of the journal Human Molecular Genetics, was carried out last year by ten Italian research centres, five in America, two in London and two in Germany.

It was coordinated by La Molinette's neurology department under the direction of Roberto Murani.

Tests were performed on 2,161 patients, 900 of them Italian. The others were American and German.

The 1.5-million-euro two-phase study, which looked at the so-called 'sporadic' type of ALS and not the hereditary type, identified a gene called Sunc1 which appears to play a predominant role in regulating ALS.

But Chio' said Sunc1 was ''probably just the tip of the iceberg''.

He said the study will now move into a third phase in which 300 new patients will be examined, all of them Italian.

''The goal will be to try and find the other genes,'' Chio' said.

Chio' has been helping Turin prosecutor Raffaele Guariniello investigate the apparently disproportionate occurrence of ALS, or Lou Gehrig's Disease, in the Italian soccer world.

But the researcher stressed that ''ALS can strike anyone''.

Tuesday, March 3, 2009

Liverpool Station


Many of you have seen this already but it's such an uplifting experience that I've decided to include the rehearsal as well.

Monday, March 2, 2009

Ideal bathroom



This isn't mine but I think the glass of beer is a nice touch.
However, my brother did install an Inax bidet in my bathroom on the weekend. It's something I was wanting and love the heated seat on chilly nights. 

The Writer