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!
June 19 - Dave Williams
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!
June 16 - Adam Rombough
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
June 15 - Donna Strome
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
June 14 - Warren Lafoy
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
June 13 - Barry Varga
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
June 12 - Ashley de Nooij
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.
June 10 - Mandy Van Dresar
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.
June 9 - John Wort Hannam
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.
June 8 - John Richardson
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
June 7 - Roy Eklund
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!"
June 6 - Doug Janzen
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!
June 5 - Fred Gillis
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
June 4 - Jody Pfeifer
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
June 3 - Mary Lou Poscente
It's day three of ALS Awareness month, and we'd like to share a heartfelt testimonial from Mary Lou Poscente, sharing how the Equipment Loan Program has added hours to her day! Porch lifts are #MakingitPossible for those affected by ALS to get in and out of their homes while preserving precious energy. Thank you for your kind words, Mary Lou!
"With profound gratitude, I would like to acknowledge our ALS Society, and in particular, Client Services Coordinator, Rob Lognon. At every approaching and and daunting challenge this disease has presented, the ALS Society has preceded me and made the transitions easier. Grab bars, walkers, AF Orthotics, transfer and shower chairs, and, not the least, a porch lift. Incredibly, this amazing aid has lengthened my days by at least two hours. Thank you from the bottom of my fasciculations." - Mary Lou Poscente
June 2 - Henri Jubinville
For day two of ALS Awareness Month, we are celebrating our 2017 Cold Lake WALK Ambassador, Henri Jubinville. Henri selflessly offered to act as this year's ambassador, to show the public what it is like to live with the disease. Tomorrow marks the 2017 Cold Lake WALK for ALS and we are honoured to celebrate the lives of those affected by ALS in the community. Henri is #MakingitPossible to spread further awareness in the Cold Lake area. From the bottom of our hearts, thank you Henri. Read his story below.
"I have been living with ALS for many years, but nobody could tell me what it was that I have. I
had spasms all over my body; I was losing strength and had noticeable muscle loss. Over a 7-year span, I had six joint replacements. They told me I had severe osteoarthritis. I worked hard as a heavy duty mechanic, which I think was hard on my body. I loved to work and help people by fixing things. Loretta, my wife, and I took many trips to the city to see neuromuscular specialists. We would see a medical team of doctors, nurses, speech therapists, dieticians, and the ALS Society. Each would speak to us separately and concluded that it was ALS deteriorating my body. That was hard to learn. Now that we have accepted it, we are thankful for the care and support that is given to us. The ALS Society provided me with a breathing machine which helps me sleep better and feel refreshed throughout the day. I also received an easy lift electric chair and other equipment. All of this support is thanks to all who participate in the WALK for ALS and help people like me. Thank you again!" - Henri Jubinville
June 1 - The Thom Family
Today is day one of ALS Awareness month, and we will be sharing a story each day from our amazing ALS community. We will begin with Gerard, Shelley and Adam Thom, an incredible family from Lethbridge. They generously agreed to show the community how equipment can help in some of life's greatest moments, such as watching your son play hockey. We are proud to premiere our 2017 #MakingitPossible PSA, and send all of our love and gratitude to the Thom family in Lethbridge!
June 30: Alfred Jongkind #MakingItPossible
Alfred Jongkind, is considered a very proud business man. In 1958 in Edmonton - Alfred started Al-Brite Manufacturing Jewellers Ltd. He has a passion for custom design jewelry, quality workmanship, exceptional customer service along with hard work and dedication. In 1958, his business was first located in the 101 Street Kitchen Building in Edmonton for 20 years. He then moved to the Bental Building and is currently at Enbridge Place downtown Edmonton. Alfred cleverly named the business ‘Al-Brite’ because ‘Al’ stands for Alfred and ‘Brite’ means that jewelry is bright. He has been a certified gemologist and master goldsmith for 65 years and he has kept the same stunning work bench throughout his career. In 2002, Alfred turned the business over to his four children. Between Alfred, his wife, four children and grandson, they have a combined total of approximately 230 years of customer service in 58 years. Alfred keeps up his knowledge through reading magazines and he continues to work at the business 7-8 hours per week. Alfred and his wife Shirley married on October 29, 1951 (65 years) and have been in the same house since 1955 (61 years). In his earlier years, he enjoyed many activities with his friends; pool, lawn bowling, YMCA Member, travelling, poker and Las Vegas.
Together, with the support of their children and grandchildren, the business has now become a Third Generation Family Business of 58 years. Humbly, Alfred says ‘he rarely missed a day of work in 58 years, but if he does now he has to make up the time’.
June 29: Gloria Prochinsky #MakingItPossible
Gloria has many natural talents along with her witty sense of humor and spicy bright personality. Gloria combines all three of these qualities plus many more to #MakeItPossible. At an early age she started to sing and continues to do so every day; beautifully I was told. She has a love for all types of music and listens to it every day including gospel, opera, blues, rock and roll, Ukrainian, Led Zeppelin and Pit Bull; she considers herself a natural go with the flow pro rapper. She used the beats of her music to cleverly clean her house – wipe here, wipe there, squirt here, squirt there and polka and rap at the same time.
Gloria has a passion for decorating inside and out. Every season she brings out Spring, Summer, Fall, and Winter colors inside and outside of the house. She has consulted many friends and family members on Gloria’s Decorating Tips and Ideas on how to make your home looking beautiful and even on a budget. She is a Feng Shui guru and keeps her talent and knowledge up by reading decorating magazines and decorating TV shows. Together Gloria and Sandy have continued to make their home warm and inviting. Not only do the two decorate together but also are dedicated to watching their favorite NFL Football Team the New England Patriots. Gloria has taken a liking to quarterback Tom Brady. Gloria enjoys the peaceful and serene setting of her front yard but especially her back yard. There she can enjoy all different types of birds, squirrels, tall trees, flowers and even the odd bat that Yannie her caregiver discovered underneath her patio umbrella as she was opening it! Yannie is a daily ray of sunshine in their home; from amazing cooking, wonderful care giving and just being part of their family.
Their home has become party central for all special occasions since there are 5 grandkids all under the ages of 7. Gloria says “I always thank God and feel very lucky to have such a wonderful man – my husband by my side, my family and friends who fill my life with happiness and hope”.
June 28: Velma Simon #MakingItPossible
Until recently, it was hard to keep track of Velma Simon (aka G-ma). Although in her eighties, Vel was active and involved in the community. She played Bingo three times a week, Pokeno twice a month, and was often out with friends. She volunteered at the Santori Hospice, calling Bingo for the patients; one of them a very dear friend, who she visited weekly. Vel painted pictures for her children, grandchildren and great-grandchildren. She also painted candles and made jewellery, which she sold at craft fairs. She enjoyed travel, frequently going to BC to visit friends and family. In her seventies, her adventurous spirit took her to India - a trip she recalls fondly.
Vel has always been a tremendous support for her family. She guided the family through numerous moves, dictated by her husband's work and studies. She always jokes that she should have received the same university degrees as her husband, as she helped with the research and typed every thesis! When her husband became ill, she was a tireless caregiver and dedicated her days and nights to ensuring he was comfortable and safe.
Vel's amazing work ethic, ability to adapt and innovate, and positive attitude have helped her cope amazingly well through a new journey - living with ALS. She continues to live quite independently, with the assistance of her family, home care workers, and the support of the ALS Society. The society has provided not only equipment, but emotional support, guidance, encouragement, and opportunities. A long-time Calgary Flames fan, Vel attended her first Calgary Flames game, courtesy of the ALS Society and Michael Backlund of the Flames. She intends to go again!
Vel is an inspiration, deeply loved and respected, and has set a fine example for the new generations of family for how to live life well.