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, December 31, 2010

Tony Proudfoot loses battle with ALS

MONTREAL - The start of Tony Proudfoot’s Canadian Football League career with the Alouettes was hardly auspicious, giving no indication of the greatness that was to come.

Drafted in the fourth round (36th overall) of the 1971 Canadian college draft out of the University of New Brunswick, Proudfoot couldn’t crack the Als’ roster as a linebacker, the position he played collegiately, and was released – only to re-sign with Montreal in 1973 and eventually be converted to defensive back.

It was through that will and dogged determination that Proudfoot constantly overcame the odds, until the end, when not even he could defeat the biggest fight of his life. Proudfoot died Thursday at a palliative-care centre, following a courageous, and public, battle with amyothrophic lateral sclerosis (ALS). The disease, diagnosed in May 2007, is a progressive, fatal neurodegenerative condition.

He was 61.

Born in Winnipeg, John A. “Tony” Proudfoot eventually moved with his family to Pointe Claire, where he attended John Rennie High School before heading to the Maritimes and UNB. In 1970, he was nominated for the Hec Crighton Trophy, awarded annually to the top player in Canadian university ranks. He graduated with a bachelor’s degree in physical education.

Proudfoot made a smooth transition into the Als’ secondary, playing 107 regular-season games between 1971-79. He won two Grey Cups with Montreal, in 1974 and ’77, and was named a CFL all-star both seasons.

In July 1977, Marv Levy, the Als’ head coach at the time, described Proudfoot as a “very smart football player.” Proudfoot always said he didn’t have an abundance of natural ability, crediting his success with being able to work, learn, ask good questions and quickly process that information on the field.

He is best remembered for spontaneously creating the advantage that carried Montreal to a lopsided 41-6 victory over Edmonton in the 1977 championship game, played on an icy Olympic Stadium field. Proudfoot used a staple gun, borrowed from a Bell Canada electrician, to affix staples onto the bottom of his, and his teammates’, shoes. It provided better footing and a decisive edge the Eskimos failed to overcome.

Proudfoot concluded his 12-year CFL career by playing three seasons with the British Columbia Lions, beginning in 1980.

In retirement, he had a successful career as a teacher, coach, broadcaster, journalist and author.

Proudfoot taught phys ed at Dawson College for 30 years. He lectured in exercise science at Concordia and McGill. He was a Stingers’ assistant coach for four years, including the 1998 team that reached the Vanier Cup, and continued his education, receiving a master’s degree in sports science from McGill.

The Als’ franchise returned to the CFL in 1996, following a nine-year hiatus, and Proudfoot became a full-time analyst with Montreal radio station CJAD, the team’s rights holder, two years later. That didn’t prevent Proudfoot from becoming an assistant coach with the Als in 2001, under head coach Rod Rust; Proudfoot continued his career as an unbiased and opinionated broadcaster.

In 2006, during a shooting rampage at Dawson College that killed one student, Proudfoot, who was trained in CPR, risked his life to tend to a student he saw injured. While the shooting continued, and until an ambulance arrived, Proudfoot administered first aid to a male student who survived despite being shot in the head.

It was while lecturing at Concordia, in the winter of 2007, Proudfoot noticed his slurred speech. He underwent tests before learning of the ALS diagnosis that May. One month later, before an Als home game, he publicly revealed his condition during an Olympic Stadium news conference.

Rather than sink into oblivion, Proudfoot used his condition as a platform, informing the public with regularity of his trials and tribulations through a series of articles written for The Gazette. In the final piece, published in mid December, Proudfoot poignantly spoke of his “imminent” death, sending out a goodbye message while admitting he hoped to make it to Christmas.

“I’ve been blessed with so much love and support, it’s truly overwhelming,” Proudfoot said. “The concern and compassion everyone has afforded me is amazing, unfathomable.”

He was strapped to a ventilator, for oxygen, up to 22 hours daily.

“Focusing on my next breath requires all of my energy,” he wrote. “I am starved of air and oxygen and need to rely on a ventilator just to feel stable, just to live.”

Proudfoot admitted the reality of his situation had been “awful and downright frightening,” but implored Gazette readers “not to worry about me.”

He raised more than $500,000 after establishing the Tony Proudfoot Fund for ALS research and remained active in the game he loved until the end. An Als guest coach at training camp in 2008, Proudfoot served as a special consultant to head coach Marc Trestman the last two seasons.

His last public appearance came in November, before the East Division final, when Proudfoot accepted the Hugh Campbell Award for Distinguished Leadership from CFL commissioner Mark Cohon.

In typical modest fashion, Proudfoot sent an email to Ronnie James, the Als’ equipment manager, notifying him the end had come while asking James to notify players, coaches and members of the team’s staff.

“I have finally lost the battle with ALS and I am going into a palliative care unit Dec. 28th,” Proudfoot wrote. “It should take a few days for me to die. I want to thank all the players, coaches and Alouettes staff for the support they have given me over the last three and (a) half years. Bye everybody, Tony.”

Proudfoot is survived by his wife, Vicki, and three children – Michael, Lindsay and Lauren.



Read more: http://www.montrealgazette.com/health/Former+Alouette+Proudfoot+loses+battle+with/4045473/story.html#ixzz19izSb9GZ

Thursday, December 30, 2010

A little early


To all my friends, may you have the best year ever! I plan on it.

Tuesday, December 28, 2010

Monday, December 27, 2010

Stem Cell research

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Posted: 7:01 PM Dec 23, 2010
Trial underway to test treatment of ALS using human stem cells
30,000 Americans have ALS or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. It's a fatal neurodegenerative disease that takes away the ability to walk, talk and eventually even breathe. That quick decline happens within two to five years. There is no known cure. Now, a revolutionary trial is underway to test a new kind of treatment for ALS using human stem cells.
Reporter: Maureen McFadden
Email Address: maureen.mcfadden@wndu.com

Saturday, December 25, 2010

Spoiled rotten


Santa arrived and I was spoiled.
I loved every minute of it.

Thursday, December 23, 2010

Turkey TV dinner

There is a story to go with this but I'll simply dedicate it to my Father. Merry Christmas Dad...and Merry Christmas Caren. Sweet memories.

The Karaoke Queen

A fun party with no mention of ALS.
YAHOO!!

Monday, December 20, 2010

Happy To Be Me



http://www.youtube.com/watch?v=06WM8oLH87M

Despite my challenges, this is how I feel--thanks to all of you. Click on the link above.

Proudfoot says good-bye

December 15 2010 Last updated at 07:03 PM ET

Tony Proudfoot, ALS-Stricken CFL Legend, Bids Farewell in Open Letter

Tony Proudfoot Editor's note: The Montreal Gazette has graciously allowed FanHouse to publish an excerpt of Tony Proudfoot's heartfelt farewell. The entirety of Proudfoot's final message can be read on the Montreal Gazette Web site. Donations can be made to "The Tony Proudfoot Fund" in conjunction with The ALS Society of Quebec.


The last time I wrote for The Gazette, in April 2010, I was anticipating that I might not make it to another Christmas. Here it is, early December, same year, and my circumstances are certainly clearer. As the Walrus says, "The time has come" literally and figuratively, and I would like to "talk of many things."

Why has ALS come into my life? What can I do with my body as it slowly deteriorates? When will my time actually be, given that ALS is a definitive death sentence? These are all thoughts that come to mind.

Who Is Tony Proudfoot?

Tony Proudfoot is a legend of the Canadian Football League and, specifically, the Montreal Alouettes. Over a 40-year professional relationship with the Alouettes, Proudfoot carved out a special place in the hearts of Montreal football fans, first as a player over nine of his 12 CFL seasons -- two of them as a CFL All-Star defensive back -- and later as a coach, game analyst, broadcaster and, in his own words, cheerleader.

In May 2007, at the age of 57, Proudfoot was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease. Characterized as bulbar onset ALS, this type of ALS first targets the motor neurons that control speech, swallowing and breathing.

Shortly after his diagnosis, Proudfoot penned a first-person story for the Montreal Gazette detailing the path ahead of him and his "bucket list," the goals he wanted to focus on in the 3-5 years doctors told him he had left to live. Those goals revolved around the love of his family, his relationships with the people around him, making a difference in the fight against ALS and perhaps most importantly, enjoying every day he had left.

Since then, Proudfoot has written periodic updates for the Gazette, often during the holiday season, updating fans and readers on his battle with ALS. On Wednesday, just over 3 1/2 years since his diagnosis, Proudfoot penned his final letter in the Gazette, saying goodbye and bidding farewell to his legions of fans, supporters and admirers.
Focusing on my next breath requires all of my energy. I am starved of air and oxygen and need to rely on a ventilator just to feel stable, just to live. I am now on my ventilator up to 22 hours per day, often going off one, to walk slowly to another room to attach myself to another.

At the beginning, without any answers and none forthcoming, I chose to take the high road and be as positive as I could possibly be and live the life I had left to the fullest. I also worked hard to raise awareness of ALS and support research into its cause and elimination. To date, more than half a million dollars has been raised for the ALS Tony Proudfoot Fund that may some day help the thousands of people in Canada who are dying. Unfortunately, there are no concrete results that can help me yet. Research efforts have moved forward significantly. I am very proud of that.

So, in the twilight of my life, I've been asked to reflect on my plight.

First, let me say how great the Alouettes were this year, Grey Cup champs once again and a huge part of my "up" days and enjoyment. They are a hard habit to kick, and my 40-year association with them in a variety of capacities, from player to coach, game analyst, broadcaster and now chief cheerleader (I wore my good luck Als tuque from the '74 Cup, during this year's game) has been a fantastic run.

I want to thank the Alouettes for everything they've done. You have no idea how much of a booster they have been to me. What can you say about people like Marc Trestman and Ben Cahoon, who came to visit me independently, just days after winning the Big One, to share their excitement and thoughts on the game and the whole experience? Ben even gave me his Grey Cup Champion hat! My broadcast partner Rick Moffat stopped by with a Grey Cup football, excellent!

They all knew I so wanted to be there with them, and to partake in their joy. Those who visited let me do it through osmosis. How about the support of special people like Anthony Calvillo and Davis Sanchez and literally dozens of others, way too numerous to name, but not to forget?

I know this will be my last December update. Right now, I'm hanging on for Christmas, and it's a tough slog and not a guarantee.

Sunday, December 19, 2010

Tuesday, December 14, 2010

My World


Many have asked how I'm doing. Those who see me all the time have a pretty good idea, but those who haven't seen me as much, have no idea. So, I decided to sum things up on my blog.
I'm losing my voice but can still talk with a weak enunciation. My vocal cords are somewhat paralysed and since they stretch across my larynx I cannot make all sounds. Also my tongue is weaker so I talk slowly. The tone has deepened -- I sound like George Burns(if you're old enough to remember him). Although I'm 24/7 in a wheel chair I can move my right leg--not so much my left. I can't move them in bed and I find it very frustrating. I use an over head lift to get in and out of bed and a portable lift to get me into my lounging chair. My Care Aides feed me some of my meals as it's very hard to hold a fork or lift my arms. I drink coffee or wine through a straw--still tasty. I have a feeding tube for water, and a V-Pap machine to use when I'm short of breath. My brain is fine.
Often I go out(with friends or Care Aide) to get groceries, shop, have a sandwich, get some fresh air, etc. I can still hold my head up but the neck muscles are weakening. I can deal with most everything because I was smart enough and fortunate enough to invest for my retirement, therefore I can afford "live in" care.
The greatest frustration is losing the use of my hands and arms. Just try existing with your hands behind your back for 2 hours and you'll understand.
My spirits are usually very good and I laugh a lot at life and myself. It's a wonderful way to cope.
Well, I think that's enough to give you some idea of where I'm at.
Life is still good. I tire easily but it doesn't stop me from throwing a party once in awhile.
Thanks to all of you who keep me smiling.

Calvin

Thursday, December 9, 2010

I try my best

Wednesday, December 8, 2010

ALS strikes another Pro Football Player

Former University of Alabama and pro football player Kevin Turner is battling ALS or Lou Gehrig's disease. Recent research shows a link between sports concussions and the development of the disease. Turner played nine years in the pros. Right now he is looking at experimental drug treatments to slow the progress of the disease. There is no cure for ALS.

Sunday, December 5, 2010

Thursday, November 25, 2010

Wednesday, November 24, 2010

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.


Sunday, November 21, 2010

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.

Saturday, November 20, 2010

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.








































Wednesday, November 17, 2010

Preservatives

Sunday, November 14, 2010

Secrets

Friday, November 12, 2010

Nov.11th

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

Friday, November 5, 2010

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.

Wednesday, November 3, 2010

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.

Friday, October 29, 2010

Thursday, October 28, 2010

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.







Monday, October 25, 2010

Friends

Saturday, October 23, 2010

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.

Saturday, October 16, 2010

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.

Wednesday, October 13, 2010

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.

Saturday, October 9, 2010

Love

Happy Thanksgiving Everyone!

Wednesday, October 6, 2010

Creative writing

Wednesday, September 29, 2010

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.

Saturday, September 25, 2010

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.

Friday, September 24, 2010

Antisocial


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

Saturday, September 18, 2010

Friday, September 17, 2010

A Dream

ALS also known as MND