Angus Smith, better known as “Scotty”, is a celebrated musician, teacher and a ham radio operator. One of his proudest successes was when he made contact with astronaut Chris Hadfield. Scotty has not let ALS stop him from sharing his musical gifts, and he still shares or offers instruction. His past students even visit and play for him. Scotty is originally from Scotland; he jokes about renaming his Stratocaster guitar the “Scottocaster”. He has played with musicians from all over the world and played at very prominent venues. This very talented man continues to share his stories and everyone is simply drawn to him. Scotty shares what a difference the ALS Society has made. The tilt manual chair and the EZ-lift chair have made getting around and relaxing less of a challenge and are #MakingitPossible for Scotty to embrace his greatest passions!
We are nearing the end of ALS Awareness Month, but we still have some incredible stories to share! Today we are celebrating Helen Banks and how she uses mobility equipment when #MakingitPossible to live each day to the fullest.
"When I was diagnosed with ALS, my daughter Kim and family invited Jim and me to live with them in the Bar-F Ranch House just west of Hinton so they can assist Jim in looking after me. I am very grateful to the amazing ALS Society for providing a lift chair, walker and scooter so I can manoeuvre the long distance from the kitchen to the parlour and outdoors. Energy management is one of my greatest challenges and the equipment makes life easier. Many thanks to the ALS Society staff!
In order to maintain a positive outlook, I treat life as an adventure and moving in with the Tew family has just extended my adventure." - Helen Banks
For today's #MakingitPossible story, we would like to honour Wayne MacIntosh, a Fort McMurray resident who is currently living with ALS. In April of 2014, Wayne began experiencing muscle twitches, weakening, weight loss and fatigue. His doctor at the time was unfamiliar with ALS, driving Wayne to consult with a different doctor, who then referred him to a neurologist. After several weeks of testing, Wayne’s neurologist concluded that he most likely had ALS, and referred him to the ALS Clinic at the University of Alberta where the diagnosis was confirmed.
At first, Wayne found it shocking to learn that he had acquired a disease with no cure that is typically fatal within three to five years from symptom onset. Over the next few months he retired from his job and spent time with friends and family across Canada and in the United States. Wayne has also acted as an Ambassador for the Fort McMurray WALK for ALS, taking place on July 16 in Birchwood Trails.
“The love of my friends and family and the hope for a cure for this terrible disease is the fuel that provides me with the inspiration to be thankful for the life I’ve lived, and make the best of each and every day I have left,” Wayne said. “The WALKs for ALS are extremely important in raising awareness of this disease, and help fund research that will one day find a cure.”
Thank you, Wayne.
It is day 22 of ALS Awareness Month, and today we are celebrating the 2017 Camrose WALK for ALS Ambassador, Henri Unverricht! Thank you Henri for #MakingitPossible to raise further awareness in the Camrose area. Be sure to join us this Saturday for the Camrose WALK for ALS! Visit www.walkforals.ca for further details.
"Without the ALS Society, I wouldn't have been able to stay at home as long as I could. It's always done on a family level. We are one big family - personal connection with the people, both family and staff. My sleep quality is very good with the bi-pap; it helped right off the bat. The moral and physical support is exceptional as well as support for the family. In the summer of 2015 I experienced shortness of breath and in May of 2016 I was diagnosed with ALS. I lived in Camrose with my wife Violet since 1993 until 2004. In 2004, we moved to Edmonton, then back to Camrose in 2012 where my wife was born and raised. I was born in Lausanne, Switzerland." - Henri Unverricht
Today we are celebrating Ken Goudie in honour of Day 21 of ALS Awareness Month. Ken shared that without his lift chair, he would have to stay in either his bed or his wheelchair. His lift chair gives him an opportunity to "visit a very cozy spot". Thank you Ken for sharing your #MakingitPossible story!
ALS Awareness Month is flying by! It is already day 20, and today we are celebrating Adrian Bussiere. Adrian has been provided with equipment from the ALS Society that has been #MakingitPossible for him to live comfortably and preserve his precious energy. When asked about his favourite equipment, Adrian said that he loves his lift chair as it keeps the swelling down in his feet and is super comfortable. He also finds his stair lift to be a necessity as it gives him access to his house and garage, which saves much of his energy. Thank you for sharing your story, Adrian!
We are back with another incredible story from the ALS community. Dave Williams is a committed member of the ALS Society's Board of Directors, while navigating his own PLS diagnosis. He is most grateful for the communicative equipment that the Society has provided him with, such as the iPad that he uses regularly. He added that he is also grateful for the support he receives with any difficulties he encounters while using his equipment.
While Dave may appreciate the ALS Society of Alberta's support services, we truly appreciate the dedication he has to raising awareness and #MakingitPossible to channel hope for a future without this disease. Thank you, Dave!
Today we are celebrating Adam Rombough, an inspirational man and true advocate for the ALS cause. Adam made it his personal mission to raise funds for the Edmonton WALK for ALS, and his team, Team A-Bomb, successfully raised over $30,000! Adam felt that it was his personal responsibility to make a positive difference for other people living with ALS. Thank you, Adam for #MakingitPossible.
"This disease will take my body and eventually my life but I will never let it take away my mind, my heart, my sense of humor, or my personality. I want you to remember even though you might see me going through some physical changes I will always be me on the inside!! I have always been in a rush to achieve every single goal that I have ever been passionate about in record time, to get to the finish line before anyone else and start tackling the next goal and its challenges. Looking back on my life this is very apparent and because of this mentality it comes as no surprise that I am going to reach the final finish line before most would. I am excited to see what the next challenge is after life on earth and I promise all of you that I will break records and over achieve in the after life too and I look forward to telling you all about it one day!" - Adam Rombough
Today we are celebrating our 2017 Red Deer WALK for ALS Ambassador, Donna Strome! Donna graciously accepted to act as our Ambassador, and represent the ALS community in Red Deer. Thank you, Donna for #MakingitPossible to spread further awareness in Red Deer! The Red Deer WALK takes place this Saturday at 9 a.m. in Kiwanis Picnic Park. For more information or to donate/register, visit www.walkforals.ca
"Walking into the Neurologist’s clinic hoping to hear there was a solution to whatever was causing my symptoms and walking out with a diagnosis of ALS, was definitely not how I had expected that day to go. Even though I was a practicing Registered Nurse, and had worked on a palliative care unit helping others dealing with a terminal diagnosis, I felt totally unprepared to hear one applied to me. I am blessed to have supportive family and friends, and am thankful for a belief that in spite of the storms, I have much for which to give thanks. However, the reality of the situation and the gravity of the diagnosis of ALS did cause me angst. I had many questions and concerns about not only the quantity, but quality of my life over the next few years. The ALS Society quickly became another anchor in the storm. The Society, from Administrators to technicians to liaisons to volunteers and peers, have provided much needed and greatly appreciated support. “You are not alone; we are here to help” – words spoken to me during my first visit with the ALS Society. They were not empty words; the Society has played a vital role in navigating with me through the maze of needs and have provided not only moral and emotional support but many practical physical devices to assist my activities of daily living. I cannot thank them enough for the difference they are making in my life!" - Donna Strome
Today we are celebrating the story of Warren Lafoy, an inspiring man with a positive outlook. Thank you Warren for your dedication in #MakingitPossible to make each day the best possible day!
"Since being diagnosed with ALS, I have been taken to the depth of my soul, my spirit is strong, it's actually stronger than it was before. Everyday brings a new challenge, the symptoms have hit me really fast and quick, ALS may steal my physical ability but it sure is not going to steal my heart and soul. I'm doing things now in slow motion and enjoying the things I love: sitting outside with nature, enjoying the birds, my family and friends. The ALS Society of Alberta and Homecare have blown me away with everything they have done for me. I'm grateful for how fast I have received equipment like a hospital bed, walker, shower chair and transport chair to make my life easier. Meeting and making connections with others through the ALS Society made me feel like I wasn't alone coming out with my diagnosis and new challenges in life. I feel like I'm not slowly dying but quickly living and my goal is to live the best life possible and make one person smile or laugh, then I have done my goal for the day!" - Warren Lafoy
Barry Varga could always bring a smile out of anyone. With the support of his family and friends, and Barry’s amazing outlook on life, Barry continued to live each day with determination, passion and humour. Barry decided he had to do something that would bring some laughter and humour at such a dark time and raise awareness about ALS.
With Judy and the girls by his side, and along with his best friends, Mike & Candace, the film, Disabled and Dangerous was made. This is the outcome of Barry’s hilarious perspective coupled with his ambition to bring people together to make a comedy project that will raise awareness and funds for ALS.
The film was premiered at Calgary's Globe Cinema in June 2012 with more than 200 people in attendance. Disabled and Dangerous has played at various public and private fundraisers. This short film has won the hearts of audiences in several American Film Festivals, including the New York City Iron Mule Short Comedy Film Series.
Barry’s spirit, amazing, positive outlook, lives on. #MakingitPossible
Today we are celebrating one of our most dedicated volunteers, Ashley de Nooij. Ashley has attended every Betty's Run for ALS since the very beginning 21 years ago. She also stepped up and joined the committee in 2014, and has been working hard ever since. She takes on more responsibility each year, with a smile and a can-do attitude. She never hesitates to commit her time to the ALS Society and we could not be more grateful to have her on board. Thank you Ashley for #MakingitPossible year, after year, after year.
It is day 10 of ALS Awareness Month, and we are attending the Grande Prairie WALK for ALS to celebrate! WALK Coordinator, Mandy Van Dresar, has worked tirelessly to promote ALS awareness in her city. Before the WALK took place, it had already raised nearly $30,000 for client support services and research. Thank you to Mandy Van Dresar, her friends and family, for #MakingitPossible to host a WALK for ALS in Grande Prairie. We know it has not been easy, and your commitment is inspiring.
Click here to read Mandy's story.
In 2012, John Wort Hannam’s childhood friend, Ken passed away from ALS. In honour of Ken, John has brought his musician friends and family to pay tribute to a wonderful friend. This year, John hosted the third Annual Songs for Ken concerts in Calgary and Fort Macleod. It is truly a celebration of friendship, life and dedication to all of the families affected by ALS. Incredibly, John has raised over $27,000 for the ALS cause.
In the midst of his busy life, John takes precious time to support the ALS cause. He has become a true ambassador to make a difference in the lives of people affected by ALS. Thank you to John, Jenny and Charlie for all you do for people living with ALS. #MakingitPossible.
See a song he wrote in honour of Ken, below.
It is day eight of ALS Awareness Month, and today we are sharing a story from John Richardson, who took advantage of the Slide and Ride program at COP. John was able to enjoy a day of skiing with his family, thanks to the equipment and support provided. Thank you to COP for this amazing program, and for #MakingitPossible to make each day the best possible day for those living with and affected by ALS!
"I had a great time on the snow Sunday at COP. I would recommend it everyone. They provided everything you need, including sit ski, lift ticket, lunch voucher, and helmet if needed. I was assigned two guides to control speed and avoid others. If interested people can go to the CADS Alberta website and look for Slide & Ride program." - John & Joyce Richardson
Can you believe it is already day seven of ALS Awareness Month?! Today we are sharing Roy Eklund's story, who is living with Kennedy's Disease (a neuromuscular disorder with similar symptoms to ALS).
"My name is Roy Eklund and I was diagnosed with Kennedys Disease in 1991. I appreciate the sheepskin slippers provided to me from the ALS Society. They are a blessing, I wear them all the time and it is so nice to actually have warm feet! I have a better sleep now that I have a blanket lifter to avoid pressure on my toes. "I call it my toe tent" In addition, I love my spokeman. People can actually hear me talking in the dining room. Socializing and connecting with others is very important to me. I look forward to attending the monthly MND coffee group at the ALS Society. It is an up lifter an encouragement and so great to talk to people and meet with others who are going through the same thing as me. Thank you to the ALS Society for all you have provided and all your support, you are a blessing!"
It's day six of ALS Awareness Month, and today we are sharing how the ALS Society of Alberta is #MakingitPossible for Doug Janzen. When asked about his favourite piece of equipment, he struggled to decide. It started with the air mattress for his hospital bed, as it has alternating pressures and settings, allowing him to rest comfortably and without pain. Then he added the EZ lift chair saying he has spent so much time in it, even at one point sleeping at night in the chair! And THEN he added the power wheelchair. He and his wife, Rita, continued to list all of the equipment in their house that has allowed them to maintain Doug's independence and to support his care. This photo is of him in his Doug's Defender's hat, which is currently the top fundraising team for the 2017 Betty's Run for ALS! Thank you for your commitment, Doug and Rita!
Thank you to everyone who joined us on Sunday for the Red Deer Paint Nite for ALS! Over 40 guests attended to attempt a cornflower and daisy painting, and an additional $100 was raised through the 50/50! Thank you to Michelle Parker and Deborah Hansen for your continued volunteer efforts in Red Deer. We will see you all at the WALK on June 17!
It's day five of ALS Awareness Month, and today we are celebrating our 2017 Edmonton WALK for ALS Ambassador, Fred Gillis! Fred has been a law enforcement officer with the RCMP for the past 29 years, and has worked in various locations across Canada. This morning, he joined the Global Edmonton morning show to share his story, and invited the community to the WALK for ALS on Saturday in Hawrelak Park! Fred, his family, friends and coworkers continue #MakingitPossible to raise a tremendous amount of funds and awareness for ALS!
Click here to watch Fred's interview!
“Hello, my name is Fred Gillis and this year I am honoured to be the ALS Society of Alberta Ambassador for the Edmonton WALK for ALS on June 10, 2017. I am a law enforcement officer with the RCMP and for the past 29 years I have worked in various locations across Canada. I am but one of the “Many Faces of ALS”. On December 1, 2015, I was diagnosed with ALS. I had been losing my arm strength and coordination for almost a year. It was devastating news and acceptance was difficult because you learn right away that ALS affects everyone around you; your family, your friends and your career. We immediately began to focus on the way forward which included education, communication, support and physical therapy. Since my diagnosis I have been getting support and assistance from the University of Alberta ALS Multidisciplinary Clinic team, the ALS Society of Alberta and the ALS Edmonton Society Support Group. ALS continually makes me adapt to the progression of the disease and I cannot stress enough how grateful I am to be able to pick up the phone and have someone understand my situation and help me come up with solutions to make living easier. I have only two words to describe the ALS Society of Alberta – love and support. Most of this support and assistance would not exist if it were not for the generous financial support by Canadians. I am taking part in two ALS clinical research trials, one of which is spearheaded by Dr. Sanjay Kalra, co-medical director of the Alberta Health Services’ ALS Clinic in Edmonton. Dr. Kalra and his research team are using Magnetic Resonance Imaging (MRI) technology to study and learn about changes in the brains of people with ALS and to track the progression of the disease in hopes of developing a better way to detect and ultimately cure ALS. ALS research gives me hope that we will one day find a cure. This is all about Canadians helping Canadians. I sincerely hope everyone will come out and support the 2017 Edmonton WALK for ALS!" - Fred Gillis
Today is day four of ALS Awareness Month, and we are celebrating the wonderful commitment that Jody Pfiefer has to spreading awareness in her community. Jody agreed to be the 2017 Betty's Run for ALS Ambassador to show the public what it is like to live with the disease. This morning, she joined Global Calgary to share why she decided to be the Ambassador, and to spread the word about Betty's Run. Jody will also share her story on Country 105 tomorrow.
Click here to see her interview on Global Calgary.
"Hans Christian Andersen said, “Just living is not enough. One must have sunshine, freedom and a little flower.” This little quote struck me as being so special and meaningful 15 years ago when I first discovered it. Going through papers and getting organized a month ago, it was rediscovered and this little saying took on a whole new special meaning to me.
My name is Jody Pfeifer. On August 3, 2016, I was diagnosed with ALS. Someone asked me, “Why you?” I responded “Why not me? This disease does not discriminate. If not me then someone else would be getting the diagnosis. It just as easily could have been you. The selection is purely random.” Now I am the face of ALS.
I have lived a full life of fantastic adventures and memories. Having grown up in Vancouver, I was active for most of my life playing team sports, racquet sports, on track teams, jogging and doing lots of skiing. Right out of high school I worked for a brokerage firm for ten years. When the firm was taken over in 1989, I moved to Calgary and never looked back. Little did I know I was about to experience the biggest adventure of my life! My son Ryan was born in 1992 and as a single parent still working in the brokerage business, I bought my first house in 1995. The purchase of that house ended up being the best trade I ever made! I still own that little house to this day and my son is living in it at the age of 24. My two greatest accomplishments have become one!
Although the majority of my family lives west of the Rockies, I have tons of “family” in Calgary. The people I’ve met and friends I have made over the years are considered family. These incredible people have shared their lives and homes with my son and I. They’ve been generous with their love and selfless with their caring and time. I love everyone in “my family” very much and it is this group of people who are now a part of my latest journey.
Having been fiercely independent my whole life, I’ve gone from being able to do/fix anything (tools included) to not being able to use an elastic or open a Ziploc bag. With each ongoing muscle twitch I think of the paralyzing, insidious dark journey this disease is taking through my body and wonder about what I won’t be able to do tomorrow? We all have to go sometime; it’s just a matter of when and how……
For the most part I’m staying positive, thankful for having so many incredible people in my life and having the gift of time to tie up loose ends. I’ve discovered that the littlest things have so much more meaning now - a little flower, dogs playing, fresh air and the warmth of the sun. One must have freedom, yes, but one must also have the freedom of their bodies to move to continue to take you on more adventures…..
Just being alive in your life isn’t enough. LIVE your life because none of us knows if someday all you will have left is the memories of a life well lived….."
- Jody Pfeifer, 2017 Ambassador for Betty’s Run for ALS