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.

June 24: Ed Finch #MakingItPossible

Ed Finch, has a natural talent, skillset and positive attitude for his learned knowledge in: mechanical, electrical, plumbing, welding, wood working and painting.  He enjoys a challenge and says “if it doesn’t work, step back, think, improvise and you make it work and 99.9% of the time it worked!”

In his late 20’s he worked at a well-known muffler shop in Yorkton, Saskatchewan. There was a contest to see who could put on dual exhaust the quickest.  All materials where laid out and ready to go for each competitor.  Ed completed the task in a little over two minutes and was presented the grand prize, a stereo set. Other interests of Ed’s includes painting bird houses his family provides to him to finish off, planting flowers, creating and painting wooden animals, cars, etc. and painting ceramics. He has a passion for wolves and had a pet wolf for 15 years whom he named Chief. Ed also enjoys reading western novels and watching western movies, particularly any movie that stars actors John Wayne or Clint Eastwood. Ed is #MakingItPossible to continue enjoying life to its fullest by filling his days with the things he is most passionate about, despite his diagnosis with ALS.

June 23: Mayor Naheed Nenshi #MakingItPossible

Mayor Naheed Nenshi continues to show his appreciation and support toward the ALS Society of Alberta. From attending Betty's Run for ALS as a guest speaker and leaving a positive note of hope behind on the cornflower letter wall, to declaring June as ALS Awareness Month on behalf of The City of Calgary, the ALS Society of Alberta is extremely proud to have its Southern office located in the beautiful city of Calgary. Thank you Mayor Nenshi for all that you do and for #MakingItPossible to proclaim June as ALS Awareness Month in Calgary.

June 22: Norm Pollock #MakingItPossible

Norm Pollock made possibilities happen. After being diagnosed with ALS, this compassionate litigator didn’t miss a step.  He went on a dream vacation with his family, a golfing trip to St. Andrews, continued to practice law, joined the ALS Society of Alberta Board, became a member of the Finance Committee and advocated strongly for the cause. With the support of his wife Janet, sons Shawn and David, and an army of friends, Norm lived each day with strength, determination and a bit of a stubbornness. Norm gave of himself every day and was recognized for his contributions to the ALS Community when he was presented with the Queens Diamond Jubilee Medal just days before he passed. Norm showed us never to give up and fight for the things that are important. 

June 21: Herbert Lindae #MakingItPossible

At the young age of five, creative, self-taught and left handed Herbert Lindae had a passion for art and painting. In Grade 7 math class, Herbert got in trouble for doodling in his math book instead of paying attention from the teacher. He started off with pencil crayons, water colors, acrylics, and then found himself thoroughly enjoying working with oils. Herbert claims that oils are his favorite because they are pliable and when you make mistakes, you can cover them. When Herbert sees a picture he likes, he is motivated to paint it himself, and when he starts, he says that it is difficult to stop. He knows the techniques of how to paint and says it is very challenging to stay steady when painting lines. Despite his love for painting and having success selling a few of his paintings over the past few years, he claims being an artist a “messy business”. Herbert is grateful for his gift of painting is #MakingItPossible to continue painting regardless of his diagnosis of ALS. 

Painting done by Herbert Lindae

Painting done by Herbert Lindae

Painting done by Herbert Lindae

June 20: John Orfino #MakingItPossible

“Hi, my name is John Orfino. I am 51 years old and my life changed dramatically in April of 2015. I was diagnosed with ALS and given three to five years left to live. Dang! That’s the kind of news that can ruin your day. ALS has taken away my ability to work and enjoy the activities I love. But, ALS has not taken away my will to live. Soon after I was diagnosed with ALS I was introduced to the ALS Society of Alberta. Wow, lucky me. They supply me with equipment and living aids that help me in day to day living, at no cost to me. I am absolutely honored to be the Ambassador for the Edmonton WALK for ALS on June 11, 2016.”

-John Orfino

June 17: Ken Knight #MakingItPossible

"Hello, my name is Ken Knight. It was a privilege to be asked to be the 2016 Camrose WALK for ALS Ambassador. I was diagnosed with ALS in January 2015; while this was a devastating event, I have been lucky to meet some wonderful and caring people over the past 17 months. The staff at the ALS Society of Alberta have been a great support for my family and I. They are a very special group of people who do everything they can to make clients' lives as easy as possible. While this disease is very debilitating, the equipment I have received from the Society has made it possible to live life as fully as possible."

-Ken Knight

June 16: Inga Kohut #MakingItPossible

Inga has humbly shared her passion and love for gardening, expressing that she just “loves all flowers”. She learned gardening from her mom in Poland at the young age of 10, which continued to be a lifelong passion of hers, gardening for over 65 years along with her husband Mel. Her passion for gardening and flowers is so profound that she went on to take 1st place in the Edmonton Sun Top Gardener’s Contest in 1999. From providing fresh vegetables to her family and friends, to coming home with a new plant or herb every time she takes a trip to the store, Inge has been the “go to neighbour” for questions about gardening for her entire life. When Inge was diagnosed with PLS, her husband Mel began #MakingItPossible to still enjoy their beautiful garden by setting up over 10 hand bars throughout the backyard. Aside from gardening, Inge also loves to build puzzles anywhere from 500 to 1000 pieces. Despite her diagnosis, Inga still enjoys every day to the fullest and still very much passionate about the hobbies and people in her life.

June 15: Jim Bell #MakingItPossible

After diagnosis with ALS in 2014, Jim lost his ability to do the physical things that he did before, but that did not change the person he was on the inside. During his life, Jim was always surrounded by so many people and everyone who met him loved him. He was always selfless, in the way he showed interest in how everyone else was doing and what was happening in their lives. Gardening was something Carol (Jim’s wife) and Jim enjoyed doing together. He had such admiration for the beauty in flowers and gardening. Jim was always smelling every rose he came upon. Many family vacations were taken to the Okanagan with his wife, children and grandchildren. His family remembers him as always the first one in the water and the one who stayed the longest. For Christmas, Carol had memory bears made out of special articles of Jim’s clothing for each of Jim’s children and grandchildren so everyone had their own special keepsake to keep close, when a loved one becomes a memory the memory becomes a treasure. 

June 14: Don Robertson #MakingItPossible

The story below is told from the voice of Don Robertson.

"My wife and I have been going to William Watson Lodge in Kananaskis for a number of years – as my condition progressed I could no longer walk the trails  (William Watson Lodge has many paved trails) and for a number of years I was confined to the cabins.

Thanks to the graciousness of the ALS Society of Alberta, in May of 2016, a bigger power chair was delivered to the lodge at the start of our stay there and picked up by the Society at the end of our stay. This allowed me to traverse pathways that I had not been on for a long time. We saw moose, mountain sheep and a grizzly bear. Many thanks to Jane Rivest of the ALS Society for delivering and picking up the chair for me.

The ALS Society has loaned us equipment and provided us with assistance and information regarding such things as the ALS Clinic in Calgary, income tax disability, occupational therapy and speech therapy.

Because of the lift in our van (provided and owned by the ALS Society) we have been able to transport a smaller power chair (also provided by the ALS Society) to a number of parks in Calgary and in the Kananaskis area. This has provided me with day-to-day freedom."

 -Don Robertson