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

Thursday, January 29, 2009

Noticing the unnoticeable


I'm sure you have often spotted something out of the ordinary. A beautiful spiderweb, a patch of unusual moss, intertwined roots. But how much time did you spend examining what you noticed?
Did you move closer? Did you take a photo? Most people don't. There is no time, it's inconvenient, it's boring. How much you miss. Look at these two photos. One was taken by Libby in Scotland and one by Julia in England. They're amazing. I'm glad someone stopped to notice--and long enough to take a picture.

Wednesday, January 28, 2009

This is the good life!


I tried spoiling myself this morning but it didn't work out as planned.
I burned the bagel, spilled the coffee and finally gave up. Breakfast in bed just doesn't work when your hands are weak and the whole process is such an effort. I'll leave the "princess treatment" for the cats. Perhaps if I had short legs and long feet, I could hold the tray as kitty does. 
In my next life I'm planning to be pampered. 

Saturday, January 24, 2009

Pippi Longstocking and Me


Forever and always I wanted
to be like Pippi--
outrageous and full of mischief.
However, I was too shy and too eager to do well in school. Perhaps if someone had given me a monkey I could have been like her. I had the freckles, red hair and pigtails.

Pippi didn't have any parents so she got to do whatever she liked. What a lucky girl!
Now that I'm older, and not well, I wish I had parents --someone to look after me and tell me everything will be all right. Thank heavens I have family and friends.
Perhaps I still have time to be Pippi. I could be the menace of Granville Street! I must get that monkey.



Neurotransmitters(chemicals) and how they are involved with ALS, Parkinson's, Depression

"Neurotransmitters are chemicals that are used to relay and modulate signals between a neuron and another cell. There are many different types of neurotransmitters in the brain, each divided into particular groups depending on their make up and function. For example glutamate is a common neurotransmitter that ensures nerve cells communicate with each other and that 'messages' to move a muscle as in the case of the motor system get through.

A problem that results in over or under supply of a transmitter causes specific symptoms and problems. A disruption in supply of dopamine is associated with Parkinson's Disease for example, while depression has been linked to various neurotransmitters including seratonin. In ALS there has been an excess of a neurotransmitter called glutamate noted hence the role of Riluzole that helps clear glutamate.

There are many different neurotransmitters and related hormones running around in the human brain, the central nervous system, and the gastrointestinal system. They're all site-specific chemicals that can be absorbed only by certain cells, and only at certain spots. This ensures that the right kinds of messages get through. They are also used and absorbed differently in various areas of the body, and sometimes turned into other kinds of chemicals.

Along with the hormone melatonin, several neurotransmitters appear to be involved in bipolar disorders, including:

Serotonin. Also called 5-hydroxytryptamine or 5-HT, Serotonin controls sleep, mood, some types of sensory perception, body-temperature regulation, and appetite. It affects the rate at which hormones are released, and has something to do with inflammation.

Dopamine. Sometimes abbreviated as DA, this neurotransmitter helps control body movements and thought patterns, and also regulates how hormones are released.

Norepinephrine. Used by both the central nervous system and the peripheral sympathetic nervous system (the nerves that communicate with the rest of the body), it governs arousal, the "fight or flight" response, anxiety, and memory.

There are various antidepressant medications and they are thought to work by moderating the effects of neurotransmitters implicated in depression. SSRIs for example affect the reuptake of serotonin by the body which effectively should leave more of the chemical in the brain, boosting its stimulatory effect.

The work on glutamate so far is regarded as one piece of the puzzle in our understanding of the cause of ALS. "
This enlightening article was posted by Emma--a researcher at PLM(PatientsLikeMe).

I do not take Riluzole as it has proven to add about 2 or 3 months to one's life at best. It is a VERY expensive drug and although I have Extended Benefit Insurance I don't see it as being worthwhile. I took it in the beginning and had a "sugar pill" reaction but it soon wore off. Until they find something that extends my life for a reasonable time, with quality, I'm not interested. I'm doing well, and whatever will be will be.

Now that I've put you all to sleep, I'll sign out.

Thursday, January 22, 2009

Wednesday, January 21, 2009

The Good Ol' Days


"The Bank of Canada cut its overnight rate by half a percentage point to 1%; it has now lowered the rate by 3.5 percentage points since December 2007. The previous low was 1.12% in July 1958."
I was only 12 in 1958 and knew diddly-squawk about interest rates.
If I was younger now, I'd borrow money at a variable rate and start snooping around stocks and real estate hoping to make a fortune in 10 yrs. Deflation worries keep the smart people's hands in their pockets. Since I'm on the older side of life and with a medical promise of less time, I'll just keep on spending to help out the economy.   
All I can remember about 1958 is NOT the interest rates but the Second Narrows Bridge collapsing, losing my pigtails and getting my first perm(it was a frizzy one), and starting high school. I suspect there were other significant happenings, but not in my little world. I did see an ad where acreage was $150 per acre out in the Fraser Valley in 1958. With mortgage rates at 4%  that seems like the good ol' days. But how much did the average person make back then?
I don't have the stats, but I do know my income as a teacher in 1968 was $450 per month. 


Tuesday, January 20, 2009

Historical Day




May this be the beginning of a closer relationship between the 2 countries.

Monday, January 19, 2009

This guy is having a bad day--I can relate.

Having a bad day makes you question everything. Am I O.K.? Can I manage financially? Did I ever like Brussel sprouts? Why do the Canucks keep losing? Do I really care? Will I die from this stress? And then after a good night's sleep and a few "help me" calls, the next day seems brighter and lighter. Thank heavens-- or the bridge would be crowded.

Off to work YOU go

Sunday, January 18, 2009


A Phoenix Rising
A phoenix is a mythical bird with a tail of beautiful gold and red plumage (or purple and blue, by some sources. It has a 600-800 year life-cycle, near the end of which it builds itself a nest of cinnamon twigs that it then ignites; both nest and bird burn fiercely and are reduced to ashes, from which a new, young phoenix or phoenix egg arises, reborn anew to live again. The new phoenix is destined to live as long as its old self. In some stories, the new phoenix embalms the ashes of its old self in an egg made of myrrh and deposits it in the Egyptian city of Heliopolis (sun city in Greek). The bird was also said to regenerate when hurt or wounded by a foe, thus being almost immortal and invincible — it is also said that it can heal a person with a tear from its eyes and make them temporarily immune to death; It is a symbol of fire and divinity.

Yummy



Chocolate espresso bars to wake you up.

Saturday, January 17, 2009

Not much happening here



Another Saturday Night and I'm working off my drugs. After an energy rush I collapsed in my Easy Chair and I'm enjoying every minute watching biographies and murder mysteries.
I'm so-o-o sleepy.

Feel better than I look




Feeling pretty O.K. today-- just don't look that great.

Friday, January 16, 2009

Toothless self portrait



Van Gogh cut off his ear lobe, I pulled out my teeth. What can I say?
Creativity causes a little mental unrest. LOL.
Thanks for all the prayers and healing energy. I'm doing well. I'm pampered by caring good friends and my new apartment dog Heidi(name from Heidis Lehr- und Wanderjahre).
In 12 days I will have teeth again. Yeah!

Thursday, January 15, 2009

Say a Little Prayer


Today I'm off to the Doc to have the 2 broken roots extracted. No food, no water, no coffee can make a woman weep. However, the best is yet to come. They said they would give me a little morphine--that was encouraging.
I'll post a toothless picture when I can. 12 days with 2 front teeth missing ought to be a treat. Friends are looking after me so I'm in good hands.

Wednesday, January 14, 2009

The fog comes on little cat feet.....




“The fog comes
on little cat feet.
It sits looking over
harbor and city
on silent haunches
and then moves on.”
Carl Sandburg

Tuesday, January 13, 2009

They started young



They grew up and became part of this--click here

Beauty And The Beast





 I was a little Tomboy growing up(although my Mother tended to dress me up for pictures) so when I was all 'growed up' and went to see the Broadway musical, "The Beauty And The Beast" in New York City, I easily related to this strange mix. I have always been a fan of Angela Lansbury who was a perfect voice for Mrs. Potts in the animated movie. 

So to listen to one of my favorite stars singing one of my favorite songs, click here.

Monday, January 12, 2009

and the wall came tumbling down


My brother arrived on Saturday with 2 friends (carpenter and electrician) and down came the bathroom wall.
We opened up the area to make room for me to turn my power chair around. Considering the chipped door frames in other rooms it didn't seem wise to have me back out of a narrow space. Ken has been a great help to me and this was another project that he worked over-time on.
The new 32" Samsung T.V. he mounted on the bedroom wall is a bonus. I may never get out of bed!

Sunday, January 11, 2009

Rain rain and more rain



Ducks are the only critters happy in this rain--and the cats who love them.

Saturday, January 10, 2009

Simple wonders



I snapped this photo at my old house after a spring rain. When I focus on these simple wonders my mind stays away from the darkness.
Jane Olivor expresses this in I Believe. 
Turn up the volume.
 

Friday, January 9, 2009

Witch Hazel



Witch Hazel, also known as winter Jasmine is blooming in the VanDusen Gardens.
Can spring be far behind?

Thursday, January 8, 2009

More on hero Nick Scandone





Nick Scandone, 42; sailor won gold medal after ALS diagnosis
By Claire Noland Los Angeles Times / January 8, 2009

LOS ANGELES - Nick Scandone, a sailor who won a gold medal at the 2008 Paralympic Games in China six years after having been stricken with Lou Gehrig's disease, died Friday at his home in Fountain Valley, Calif. He was 42.


Sailing since he was 8, Mr. Scandone was an All-American yachtsman at the University of California, Irvine, who fell just short of qualifying for the 1992 Barcelona Olympics. He left competitive sailing until he was diagnosed in 2002 with amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

Three years later, Mr. Scandone was named US Sailing's Rolex yachtsman of the year after beating an 88-boat fleet of able-bodied and disabled sailors in the 2.4-meter open world championship regatta off the coast of Italy. He has been nominated for the 2008 award, sailing's highest honor; the recipient will be announced later this month.

In September, as skipper of a two-person keelboat, Mr. Scandone and crew member Maureen McKinnon-Tucker, a paraplegic from Marblehead, Mass., won the gold medal in the SKUD-18 class at the Paralympics regatta in Qingdao, China.

"Nick Scandone redefined the power of the human will to survive and to succeed," McKinnon-Tucker told The Boston Globe.

Mr. Scandone's wife, Mary Kate, and his brother, Rocky, accompanied him to China and cheered him on during the international competition for disabled athletes. The US team chose Mr. Scandone as its flag bearer for the opening ceremony at Beijing.

"It was inspirational," Rocky Scandone said. "Nick knew what he wanted to accomplish, and he kept himself alive for the Olympics. When he was diagnosed with [ALS], we thought it would be a couple years. Around the fourth year he had his eyes set on the Olympics. . . . No one thought he would be that strong, to last two years. He willed himself through it. It was an incredible, incredible journey."

An estimated 5,600 Americans annually develop ALS, a degenerative neuromuscular disease that affects nerve cells in the brain and spinal cord. Few live five years after being diagnosed.

"Without sailing, I don't know where I'd be," Mr. Scandone said after winning the gold medal.

A year after a doctor told him that his nagging back pain was caused by ALS, Mr. Scandone quit his job as a restaurant equipment salesman in 2003 and decided to devote the rest of his time to sailing.

At first, Mr. Scandone was strong enough to skipper a one-seat sailboat with adaptive equipment, but as he weakened and lost the use of his legs, he switched to the two-person dinghy fitted with hand controls.

"He was certainly the most disabled skipper who competed at the Beijing Games," McKinnon-Tucker told the Globe. "I would venture to say that he could quite be the most disabled athlete who was there."

In training, the pair had to adapt tactics and strategy as his condition worsened.

"It was all part of the plan," said McKinnon-Tucker. "I knew that his condition would change between when we met and when we would compete. Many people in the medical community, even friends and family, worried he would not make it due to how quickly ALS strikes most people.

"I continue to be amazed at how natural and brilliant of a sailor he was."

The victory was the pinnacle for Mr. Scandone, his wife said.

"It was bittersweet for me because I knew that once it ended, the disease was taking a toll on him, and he wouldn't be living much longer than that. But it was a joyous occasion."

In addition to his wife and brother, Mr. Scandone leaves his father, Vincent.

Globe correspondent Jenna Nierstedt contributed to this obituary.

Wednesday, January 7, 2009

Favorite cookies



A friend of mine makes these chocolate-ginger cookies for me every Christmas. They are delicious!
Click here for recipe.

Wake me when it's all over


I went to consult with a specialist Monday-- before my dental surgery on the 15th. After he told me about the difficult procedure, that I would get morphine, to have ice packs on hand and to have someone stay with me for 2 days--I was sick to the stomach. I'm a wimp about pain so it's a good thing I have friends to baby-sit me--massage my feet, feed me soft food.
They don't know their jobs yet, so don't tell.

Tuesday, January 6, 2009

New York's ice storm



beautiful photo by permission from an ALS pal who is 32 and lives in Stillwater New York.

Monday, January 5, 2009

My friends are going here and here and there





Tired of shovelling snow perhaps? Vegas, Maui, Palm Springs--enjoy.

Sunday, January 4, 2009

Need I say more?

Saturday, January 3, 2009

Friday, January 2, 2009

Nick Scadone--ALS Olympic Gold Medal Winner Dies





3 months ago: BEIJING - SEPTEMBER 13: Maureen McKinnon Tucker and Nick Scandone of USA accept their gold medal in the SKUD18 Sailing event at Qingdao Olympic Sailing Centre during day seven of the 2008 Paralympic Games on September 13, 2008 in Beijing, China.

It is with great sadness that I post the loss of Nick--a fearless sailor.