Why dinosaurs are extinct

I love this photo

This photograph was taken by an ALS pal, Dorothy, in Powel River. Her pets are enjoying the first snowfall. I wonder what they'll think of tomorrow?

Who gets ALS?

As many as 20,000-30,000 people in the United States have ALS, and an estimated 5,000 people in the United States are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

About 5 to 10 percent of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease. About 20 percent of all familial cases result from a specific genetic defect that leads to mutation of the enzyme known as superoxide dismutase 1 (SOD1). Research on this mutation is providing clues about the possible causes of motor neuron death in ALS. Not all familial ALS cases are due to the SOD1 mutation, therefore other unidentified genetic causes clearly exist.

Glutamate

Studies 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.

First Snowfall in the City by Tess and Karyn

Tess(my Care Aide) set up my tripod and adjusted it for my weak jiggly hands and arms. I could barely snap the photos but managed to get some good ones with my Lumix Panasonic DMC-FZ18 with magnifications varying from 1-18. Tess used my Sony DSC-W100 with only a magnification of 2-8 but by importing and cropping the photos were great.

I love winter and snow so you will be bombarded with more photos in the months to come.

Preservatives

Secrets

Nov.11th

It's always a sad day but as long as there is violence, religion, and hatred there will be wars.

Some times you capture a moment

Tonight I watched the setting sun reflect on the city--and then a rainbow! Nature offers so much beauty, but often I was too busy to notice. One thing positive about being in a wheelchair is that I never move very fast, therefore getting the opportunity to see what I once might have missed. Tonight was glorious.

Getting Better

I'm healing and getting used to carers pumping water into me. LOL. I had a good day out in the sunshine for shopping and lunch.
Life is forever changing and getting more difficult but I still laugh and enjoy most days.

Autumn after the rain

My friend Anne and I went for a walk yesterday and took advantage of the sunny day to photograph some Fall images.

We had a few days of wind and heavy rain and many of the trees were stripped bare of their colors. The first photo reminds me of myself and all the others I know, who despite terminal illness, keep hanging on.

It was a fun outing and I hope to experience more sunshine soon. However, the first snow is on the mountains and the air often feels like winter already.

Friends

Home Again

I'm home and snuggled down. Everything went well with no complications.

The staff were caring and my roommate(MS) was a wonderful woman with humor and courage. I learn so much from others on a similar journey.

I will now take water through the tube as I'm not a good H2O drinker. All other food will be by mouth, as usual, until I begin coughing/choking frequently. The greatest fear is that I will get aspiration pneumonia so I must be cautious when eating and drinking.

I'm happy to have it done--no pain--and enjoyed meeting so many dedicated professionals and fellow courageous patients.

The entire experience was softened by the companionship of my Care Aide and all of you praying, hoping, visiting and sending cards, emails and telephone good wishes. Thank you.

Seasons

The loss of summer moments with orange sunsets, hot days at the beach and the Rufus Hummingbird will be replaced with the beauty of pink winter sunrises reflecting on the water, the first snowfall and Chickadees hanging upside down to dislodge a berry.

I'm getting a PEG tube

On Tuesday, I'm getting a feeding tube put in at VGH.

My FVC(breathing) has dropped to 43%. It's best to get it before my percentage drops too low. I won't need to receive food through it yet but when the time comes, it will be there. I'll be in GF Strong for 3 days.

I'll update you on this adventure when I'm home and comfy.

Perhaps I'll have a story or two to tell.

Love

Happy Thanksgiving Everyone!

Creative writing

Change

"Most people can look back over the years and identify a time and place at which their lives changed significantly. Whether by accident or design, these are the moments when, because of a readiness within us and a collaboration with events occurring around us, we are forced to seriously reappraise ourselves and the conditions under which we live and to make certain choices that will affect the rest of our lives." Frederick Flack

I tend to agree more with Maxine, "Change is O.K. as long as I don't have to do anything differently."

As my strength goes out the window I need to make changes monthly. How I drink my coffee, how I transfer to bed, how I pay for things(I can no longer sign my name so Visa is out), how I hold my head(need headrest)---these are all adaptations to change. Do I like them? Of course not. Do I accept them? Only with a little grumbling. But with time I stop thinking about it and move on. I don't have any choice and I refuse to become melancholy for days. Change is a strange bedfellow. You look forward to it or dread it, you accept it or mumble about it forever. Time is so precious , therefore I choose to make changes with some grace. I'm thankful that I have help from the ALS Clinic and Society. I'm thankful that my friends and family encourage me. I'll just keep the occasional tantrum a secret between my caregiver and me.

Checking lottery tickets

No, I haven't won but I'm planning on it. Just $500,000 is all I need. I'm not greedy. Perhaps next time. I'll let you all know.

Today is a beautiful day and I'm going to Meinhardts to pick up a few groceries then off to explore some streets I haven't travelled before. Every apartment block, every home, has a story if you look with a little imagination and have some facts about history of the area. What I don't know, I make up. My mind can be quite entertaining. Yes, I know I should "get a life" but I quite like this one.

Antisocial

If you don't want visitors--buy this home.

Time Changes Everything

The First of May Beautiful song. Click here.

A Dream

ALS also known as MND

Losing My Voice

Vocal Cord Paralysis

Vocal Cord Paralysis | Vocal Cord Dysfuntion

Definition
The vocal cords are two bands of tissue located in the larynx (voice box) above the trachea (windpipe). The vocal cords open and close like a valve during breathing, swallowing and voicing. Voice is produced when exhaled lung air passes over the closed vocal cords and causes them to vibrate. During swallowing, the vocal cords close to protect the airway.

Vocal cord paralysis is a condition that occurs when one or both of the vocal cords (or vocal folds) do not move properly. The lack of movement may be partial (paresis) or complete (paralysis), and the symptoms can range from mild to life threatening. A person who has a vocal cord paralysis may experience voice and/or swallowing difficulties.

Figure 2A (left): The vocal fold on the top of the photo is paralyzed. .
Figure 2B (right): Even with extreme effort, the opposite vocal fold cannot meet its partner.

I'm showing you this to demonstrate why I struggle to speak now. Whenever I talk it feels like I'm trying to bring my throat walls together. It is very fatiguing. Eventually (4 or 5 mos. is my guess) I won't speak at all. Please still talk to me. I will be an excellent listener--for a change. LOL. By the way--don't feel sorry for me--I've talked my share in life and will still have the internet to speak my mind--if you dare give me your email address!

Slow exposure

This is a photo I took of fireworks. Most people would throw it out but I found the intricate pattern intriguing. If I could paint I would use the picture as a sketch for an abstract. It brims with energy, color and light.

An inspirational video

http://www.youtube.com/watch?v=U3NgzQ9Pcsg&feature=related

I don't 'do' Mondays

Girl Who Loved The Wind

Girl Who Loved The Wind is a children's book written in the early 70s. A young girl experiences freedom in the wind, away from her overprotective Father. I never had an overprotective Father, but I do have a disease that controls me physically.

Today I went out for a ride in the late summer wind. Somehow I felt free from my handicaps -- I thought at full speed I might fly. It was chilly but sunny, and a slightly clouded blue sky made me recall watching all those animal shapes float over me as I lay stretched out on the grass. Childhood was blissfully filled with fantasy.

Freedom is not where you find it but rather where and when you feel it. The freedom I felt in the wind today was very much like the wonderful freedom I feel in 'aloneness' that has always lured me away from the mainstream.

Today was a marvellous day.

You can dress her up but you can't take her out

Old enough to remember this?

On Elizabeth in Los Angeles

ALS was unlike anything she had experienced. The more moderate symptoms and sensations — the yawning, sneezing, hiccupping — she could handle, but the involuntary fits of laughing and crying were a bit much. Tears were hard to explain to the clerk who simply wanted to know "Paper or plastic?"

One day she put a key in a lock and couldn't understand why it didn't turn. She pulled it out. It was the right key, wasn't it? She tried again. The lock had to be broken. Then it dawned on her: She had lost the strength in her fingers.

The disease became a hundred little battles waged in a losing war. She taught herself a new way to use a paper clip and light a match, and with the help of a speaking device attached to her computer, she could type and it would talk.

Eating was her first major defeat. As her tongue stopped working, she changed her diet to smoothies and oatmeal. Still she choked, and her doctor worried she might aspirate. A feeding tube was prescribed.

She missed her salads but made do, injecting a regular diet of Ensure and protein supplements into her stomach. Life, she explained to a friend, does not have to be lived in the extreme. "You can be fully alive by just being alive in your body."

Chocolate was a clear victory. If she tucked a Hershey's Kiss into her right cheek, lay down on her side and let it melt, she could still savor its sweetness.

My youngest brother

After a long stay in VGH for a liver operation, Malcolm will be heading home to Kamloops on Monday.

Following a rest and healing he will start his second round of chemotherapy.

He is the 3rd sibling to have colon cancer in the last 4 yrs. Our Aunt and Grandfather died from colon cancer--it must be a defective gene we inherited.

I know he is a true warrior and will be back to work and on the lakes fishing soon.

When we were young we cut and packed cedar shakes together and always dreamed of winning the lottery--we're still dreaming.

Before and after or short and shorter

Susana has been cutting my hair for 20+ years. Since I can no longer get to her salon she comes to my home and tries her best to keep me looking neat and pretty(??).

We have talked through ups and downs, through laughter and tears. I consider her not just my hairdresser but a good friend.

Juan Carlos(Susana's husband) took these photos on Tuesday.

Any awareness is great--thank you Sarah

Thanks, Sarah Fisher and Dollar General!

From a press release hot off the presses...

FISHER TO CARRY THE COLORS OF "CAREY’S HOPE" AT CHICAGO AND KENTUCKY
by Sarah Fisher on Tuesday, August 24, 2010 at 10:07am
Indianapolis, IN (Aug. 24, 2010)-Sarah Fisher, driver/owner of Sarah Fisher Racing (SFR), announced today that she will be sporting a new look on the rear wing of her No. 67 Dollar General Honda powered Dallara for the next two races of the IZOD IndyCar ® Series season, but for a very special reason.

In January 2010, Carey Hall, owner of Hall's Motorsports Refinishing (HMR), painter for Fisher's team in Indianapolis and fueler for SFR since its inception in 2008, was diagnosed with ALS. According tothe ALS Association, "Amyotrophic Lateral Sclerosis (ALS) is aneurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech swallowingor walking difficulty."

Fisher hopes that by proudly displaying the Carey's Hope logo this weekend, she will raise awareness of the horrible disease and raise funds to help Carey and his family in their battle.

"Dollar General and SFR are one big team that works together and supports each other during times of need," said Rick Dreiling, Dollar General's chairman and CEO. "We stand behind Carey and his family during this challenging time and are committed to helping him win his battle with this disease."

"Carey and his family are a big part of the family here at SFR," said Fisher. "We are very proud of his encouragement and dedication towards getting through this disease and the inspiration he lends to all of us every day. Not only has he been a part of our team and our family, but the family he has will always be a part of our lives. I hope we can help him in a bigger way by getting the word out there and sharing with our sport the intensity and passion the people who support it, have."

In the SFR race shop, located on the Westside of Indianapolis, ALS wristbands are seen on almost every employee. "We're behind him all the way," said Fisher's crew chief, Anton Julian. "Carey has been a vital part of this organization and we're like a big family here. We'll do anything we can to help him through this battle."

Hall resides in Greenwood, Ind. with his wife, Carla, and three sons, Christopher (20), Colin (11) and Cruz (6). Please visit www.careyshope.com to make a donation or to purchase a Carey's Hope decal, t-shirt or an ALS wristband.

Deliscious!

A dream

I often chug along the board walk and check out the house boats. I've always had a romantic notion about living in one. The intimate village, my sailboat docked at my doorstep--barbecues and fine wine on my deck at sunset. The brown one is my favorite.

On the way home, after shaking every bone in my body on the wooden walks, I stopped to see the geese and ducks keeping cool on the shaded grass. Geese poop is not something you want on your power chair wheels! Been there, done that. Yuk! I need a poop detector on the front wheels.

This girl is the smartest of all--stays in the water and hides behind the reeds. Her babies are independent now. I might of had children if I knew they would move out after one year. Ha!

It's hot and I head for home with sweet red cherries and fresh plump raspberries. I feel weak but happy.