Making It Possible Day 25 - Michelle Savard

My name is Michelle Savard and I have had the privilege of working with the ALS Society as a Client Services Coordinator for 4 years. I was drawn to the opportunity to be a part of a team that serves families on their journey living with ALS.

I was compelled by the opportunity because my mom had ALS. When I reflect on that time, one memory stands out above all others. My sister and I were helping my mom, and, as it sometimes happened, we were struggling to find the best way to help her. Despite the awkwardness and our struggle, the three of us broke into giggles that started with my mom. Memories of those light moments, despite all the difficulties that ALS brought, forged a lifelong belief in the power and impact of a moment.

So many moments that families have created and shared stand out in my time with the ALS Society. The moments and their impact can be hard to describe, it’s a feeling, and it’s palpable.

It’s receiving a picture via text of a client joining the family dog walk again with the scooter they just received from the Society and looking so very happy. It’s hearing the joy in someone’s voice when they tell you they could BBQ again, for the first time in 2 years, because of the functions their power wheelchair has and the ramp that was recently delivered. It’s hosting a support group and hearing someone say that, since their diagnosis, they assumed they could not travel again, but after hearing in Support Group how others managed it, they felt more hopeful about it. It’s those times when ALS Society team members, and vendors, and other services, like Home Care and the ALS Clinic, work together to get someone that piece of equipment that they need urgently.

It’s the feeling of community, support, and care.

I have learned so much from the families we serve, about their journeys, about how to hold space, about how be of help, about taking in the moments.

Making It Possible Day 24 - Mike Centeno

My name is Michael Centeno, I came from the Philippines and have been here in Canada since October of 2007. I am a father of two - my son Mikhail is 24 and my daughter Maia Mikaela just turned six years old. I first came across the word “ALS” during the ice bucket challenge phenomenon, but honestly I didn’t pay much attention to it until sometime around summer of 2018 when I started googling about the weakness in my left hand. I started researching about arthritis, carpal tunnel etc. until it becomes serious researching about MS, ALS and the likes. So I became a little bit familiar with those diseases, but totally dismissed the idea that I might actually have one of them.

Growing up in Philippines I had never heard of someone affected by ALS, which gave me confidence I didn’t have those kind of illness. Even when I brought it up with my family physician here in Calgary, he said “no it’s very rare and you’re Asian, which would be even rarer.” That gave me some relief Until January 15, 2020 came, and the neurologist told me the diagnosis. It felt like the world came crushing down on me, no words came out just tears as I hugged my wife and my daughter.

The drive back home seems like it took forever and everything was blurry. Still hoping that what just happened is just a bad dream and I would be waking up soon. The first thing I did when we got home was to pray in our little altar. I didn’t ask God why, instead I said thank you for giving me this trial, just please make it easier for me and my family. I truly believe that those who were given some difficulty in life will reap a reward from God. So many sleepless nights and overwhelming emotions followed but after a week I came to the realization that my family needs me especially my daughter. That I need to make the most of it while I still can and still have strength in me. I excitedly planned and booked multiple family trips but then covid came and halted everything. It’s a huge setback but it’s still an opportunity to spend more time with my family.

I’m enjoying lots of fun time with my daughter by driving her to school until one of my doctors refrain me from doing so. I was crushed and heartbroken even if I beg him to give me couple of months more until my daughter finish the school year, and told him I wouldn’t compromise her safety if I knew I could no longer do it safely. But it is what it is, I need to follow and not to complicate things further. I’m also very fortunate to be part of the clinical trial medication, oral Edaravone. I am the 177th participants out of the 180.

I am so glad that a lot of people are very supportive with people afflicted with ALS and their families. The ALS clinic, the home care OT, most especially the ALS Society of Alberta for their all-out support from the very start. They’re beside me as my disease progresses. From the very small pieces of equipment to complicated and expensive ones. We even brought some with us on our trip back to the Philippines and made it easier. I got to attend the Calgary Flames game through the generosity of Mikael and Frida Backlund, we really had a great time my daughter even yelling “best night ever” while munching on nachos and cheering for the Flames. It’s really heartwarming to know that a lot of people outside of family and circle of friends care.

Life’s journey is not always a bed of roses especially if someone is ill in the family. Mine is no different but with my wife Mia always on my side everything seems to be easy. Her caring and sacrifices go above and beyond, setting up a makeshift bedroom on the main floor so I don’t need to go upstairs and trading a nice comfy bed to an air mattress just to be by my side every night. I would say that every Filipino couple’s dream is to make a family and have at least one child to care for them when they get older. I’m so lucky to have two, my oldest Mikhail who is old enough, did not hesitate to step in and help. But I couldn’t imagine my daughter Maia that an early age was already obliged and would willingly care for me. In one of our conversations I asked her what she’s want to be when she grows up? And she said “I want to be a doctor someday, I’m actually practicing now to become one by taking care of you”. That melts my heart and brings me to tears.

Sometimes I couldn’t help but ask, why life seems to be so unfair. Nobody deserves to suffer, especially little kids. But it always comes back to the answer that, everything happens for a reason and in God’s perfect timing everything will be alright.

Making It Possible Day 23 - Heather and Ruth Cole

Heather’s journey with ALS started 22 years ago on April 19th, 2000, when her mother Ruth Cole was diagnosed with bulbar onset ALS. Ruth once said, “This disease will kill me, but it won’t kill me today.” The disease quickly took her ability to speak and swallow on her own, but Heather recalls her mother taking these times in stride.

“The ALS Society was extremely helpful in getting us equipment and aids to communication and Jane Rivest was a godsend!  My mom, her friend, and I went to the William Watson Lodge in Kananaskis for a weekend.  Her colleagues from the Calgary Zoo came to the house to sing carols for her the Christmas before she died, so about 20 people were crammed into the living room.  She loved it.  We had a chair lift installed and my niece treated it like a carnival ride, which gave my mom a giggle.  And we had a terrific home care attendant, Janice, who looked after her, so she could stay at home through the course of her disease.”

Ruth went on to be the Betty’s Run ambassador in 2001, participating with her husband of 36 ½ years, her two children Heather and Bruce, and two grandchildren. She continued to fight before passing away on January 26th, 2002. Heather has since participated in every subsequent Betty’s Run, 22 years strong. She currently lives in Saskatoon, and has travelled with her friend (also named Heather) several times to participate, as well as donating thousands of dollars across the years.

“I’ve never lived in Calgary since I’ve attended the run, so I’ve always travelled to get there. And I’ve always had people who donate from other cities, depending on where I’ve been living at the time. One year, I had just arrived from a trip to England, so did the walk with terrible jet lag!  I know there are lots of people who are just as dedicated as I am about raising funds for Betty’s Run and taking part every year, even after losing their loved one(s) to ALS.

I had a cancer diagnosis just before COVID started, so I’m being extra careful about gatherings, hence the virtual run again this year.  I’m doing fine, but exercising caution.”

We’d like to give a heartfelt thanks to Heather Cole, her family, and all those who have donated to her and her team over the years. Her constant support and dedication in the face of adversity is truly inspiring.

Making It Possible Day 22 - Quonset Days

Peter Biemans passed away in August 2009 after a hard-fought battle with ALS. ALS is a disease that leaves the affected completely dependent on others, trapped in a body that they can no longer control. To watch Peter turn from an outgoing, active person to someone who could only sit and watch the world go by was absolutely heart-wrenching.

The Biemans family wanted to raise money and awareness for the ALS Society of Alberta while celebrating the life of a truly wonderful man. With their local Walk cancelled, the Biemans family decided to fill the gap left by that event and Quonset Days was born. The first Quonset Days was organized in 2010 in only a little over a month and over $7500 was raised the first year!

In 2016, the Biemans family realized that Quonset Days had grown so much that they required help with organizing the event. Thanks to some great friends, the Quonset Days Board of Directors was formed. Their goal with their board is to continue making Quonset Days better every year. Quonset Days has grown to include a silent and live auction, kick-off party, live bands, crazy games, beer gardens and camping. The event is held on the family farm – It truly is the “Greatest Outdoor Party on Dirt”!

Quonset Days has become one of the biggest events supporting the ALS cause in Alberta.

Thank you to Janet, Trevor, Breanne, Traci & Brandon for making possibilities for our families. To learn more about this year’s event, visit quonsetdays.com

Making It Possible Day 21 - Ralph Scott

Hello, my name is Ralph Scott and the journey to my ALS diagnosis began with several years of health issues. My previous family physician dismissed issues due to me being a Type 2 diabetic and upon his retirement I was lucky that Dr. Gradwell agreed to take me on as a patient.  The first thing this new Dr  said to me was “go ahead and tell me how you’re feeling, I’m listening”.  What a complete 180 as my previous physician always said “listen to me”.  During the introductory appointment we reviewed my medical history, weight loss and he advised me that my calcium levels were quite high going back to 2007. Several months later after surgery for “hyper parathyroidism” the little toe on my right foot didn’t feel right. After consulting  with Dr Gradwell a referral to Alberta Neurological Centre was booked. In November 2021 after 2 consultations, I was diagnosed with ALS. At first, I was devastated, but the more I thought about it the more it made sense.  My main concern is for my wife, Susan, and our family as I was worried about them and our future. As time goes by, I’m more accepting of my condition and what is in the future for us.

In my career in transportation, I’ve worn many different hats from driver/owner operator to administration of various companies. I ask myself if the petroleum and chemicals where we were required to top load the tankers without proper personal protective equipment played a part in ALS.     

In 2018, Susan & I downsized and moved into a new home in Mahogany, which turned out to be a blessing due to proximity of the ALS clinic at South Calgary Health Campus. In 2019 our miniature Daschunds; Fiona & Kelci came into our lives, originally we had planned on only one puppy. Fiona chose Susan, and Kelci chose me. As we were leaving discussing which puppy we wanted the breeder  messaged us asking if we would consider both puppies.   Kelci  was born with a congenital eye condition and she was concerned no one would adopt her and did not want her to be alone - we agreed and there’s not been a dull moment since!  We are also very thankful that just prior to the diagnosis,  my daughter, son-in-law and granddaughter Aurora moved back to Calgary from Victoria.  My son also lives in the city so is wonderful to have such a great support system.

Upon being diagnosed, the support system through the ALS Clinic as well as the ALS Society was activated within days. I am so thankful for everyone who has become part of my care team – all are so dedicated, compassionate and sincere beyond belief.  Currently, I’m undergoing Radacava treatments which require infusion for 10 days within a 14 day period followed by 14 days off.  I am also participating in a clinical trial through the University of Calgary with Berchman and Janet.

There are two things in life that I believe, one is that the journey of your life is a path already planned for you. Second, a colleague once said to me that “adversity doesn’t build character, it brings it out”, I believe this to be so true. Throughout our lives we experience many forms of adversity and grow and learn from from it. It would be easy for me to be in a room with the lights turned off and hugging my knees rocking back and forth, this would accomplish nothing. I choose to accept the challenges I’ve been dealt and be forever grateful for all that I have in my life rather than mourn what I’ve lost.

Making It Possible Day 20 - The Pisko Family

Mary Pisko loved flowers, working in the flower department of the Okotoks Safeway for 10 years until 2008. She was a mother of four, a devoted wife to Tom, and a strong woman who was not one to complain. However, one year after she finished working as a florist, the day before she turned 60, Mary was diagnosed with ALS.

Mary’s battle with ALS was, like it is for so many, a short one. But as Tom recalls, she never complained about having ALS, and she remained at home and cared for by her family.  She was only in hospice for 24 hours before she passed in 2011 at the age of 61. Ten years later, Tom makes the astute observation that “After spending your life with someone, the loss of your loved one to ALS never goes away.”

Tom was blessed to remarry following the loss of Mary, and his wife Carolin is a talented quilter who has been perfecting her art for the past 50 years. When Carolin quilts, she likes to focus on the person she is making the quilt for, sending out positive thoughts for everyone affected. The quilt pictured above is in memory of Mary, done in the cornflower design both in honour of Mary’s love of flowers, and also the fact that the cornflower is the ALS symbol. The beautiful flowers all over the quilt are a true work of art, and an homage to Mary and other friends they have lost to the disease.

The quilt was a collaborative project with friends Tammy and Lynda, who took on different components of the quilting. It is a gorgeous piece of art, and we are so humbled that Tom and Carolin would like to donate it to us at the Society to use as a fundraiser. We are still confirming the date and location as to where this will be auctioned or raffled, but we will be sure to make an announcement!

Thank you Tom and Carolin for sharing your story and your talent. This gift will certainly make a difference, and all in Mary’s memory.

Making It Possible Day 19 - Mikael and Frida Backlund

Mikael and Frida Backlund have been making possibilities for our families since 2015. In honour of Frida’s mom, they have dedicated their valuable time and effort to support families affected by ALS in Alberta. 

 In addition to donating funds and hosting events, they generously provide a night out for families to spend together and enjoy a Calgary Flames Game. 74 families from across Alberta have had the opportunity to attend a game over the past seven years .

Frida organizes annual events to create awareness and raise funds for programs and research.

Mikael and Frida not only support the work of the Society but more importantly, make memories for our families to keep forever.

Mikael and Frida support the ALS community in every way and even through the pandemic found ways to support families in Alberta.  

Thank you Mikael and Frida!

Making It Possible Day 18 - Drayton Valley Committee

Bowling, Walks, Dueling Pianos, paint night and raffles – the Drayton Valley Team has organized it all! We wanted to highlight this team of amazing women and their tireless efforts as part of this year’s Making it Possible… and today is more than fitting, as it is the day of Drayton Valley’s Walk Together for ALS.

“Our Committee is made up of sisters Melanie and Marcie Pruden, cousin Kayla Leeder, and Nicole Tymchak, longtime family friend (aka the “third daughter”). We lost our mom, Audrey, to ALS in April 2016 after she had been diagnosed in early 2015. It was so hard to watch her battle the disease as her mind was still 100% there, but as the disease progressed she became immobilized and couldn’t speak.

Our family received so much support from the ALS Society of Alberta. Whatever we needed was delivered within a few days because the Society knew when something was needed, it was needed now. They provided 3 different wheelchairs, an electric lift chair, a porch lift, roof lift, BiPap machine, portable suction machine, transfer board, and a hospital bed. And if that wasn’t enough, they even trialed many different mattresses on the bed so our mom would be as comfortable as possible. Not to mention the emotional support we also received throughout the journey.

An ALS diagnosis can cost a family up to $250,000, so the fact that the ALS Society offers an Equipment Loan Program as part of their amazing client support services, is truly a blessing to families. We cannot say enough good things about the ALS Society and the work they do to ensure that each day is the best possible day for those living with and affected by ALS. We had so much support and there is no way we would have been able to get through it without the ALS Society. We were able to stay home with our mom to care for her which was so important to us.

Before our mom was diagnosed, we had only heard of ALS mainly through the Ice Bucket Challenge, but we soon learned that many people local to Drayton Valley had been affected by ALS as well. In the past 10 years, this disease has affected 12 individuals and their families in our area. We wanted to give back somehow!

We attended the Edmonton Walk to End ALS in 2017, walking in honour of our mom. It was then that we decided we needed to bring this Walk to Drayton Valley to help spread awareness for the disease and build a support system in our community for anyone living with and affected by ALS.

The four of us took on something that most people our age would not. But we continue to do this to honour Audrey’s legacy and to help raise funds for the ALS Society and ALS Research so that both can continue doing the amazing things they do for generations to come, and to let others in our community know that they are not alone.

We would like to thank and acknowledge our very large family who act as our event volunteers and support system – we wouldn’t be able to do any of this without you!”

Thank you Nicole, Melanie, Marcie and Kayla for everything that you do! We are so happy to be able to attend today’s event in person again.

Making It Possible Day 17 - Colleen Olson

Hi, my name is Colleen and I was diagnosed with ALS in June of 2021. Symptoms (which I had no idea were symptoms) started showing up more than a year prior to my diagnosis. Now it is easy to look back and say ahhh because I know what the symptoms of ALS are, but back then, I had no idea.

I decided to hold the garage sale fundraiser very early this year as a way to have some kind of control over the disease which is not really controllable. Over the years I have helped others in their quests to fundraise for other diseases (shaving my head for Cancer, running a scavenger hunt for Cystic Fibrosis, etc), but never, did I ever think that I would some day be doing a fundraiser for a disease that had invaded my body.

Holding the garage sale would not have been possible without my community of family and friends. My mom and nieces in Regina provided donations for us to bring back at Easter. Other local friends and family provided items. Many helped with the HUGE task of setting up the sale (23 big tables, 3 shelving units and a driveway full of items). Then those who helped during the sale and with the packing up of items to be given to other charitable organizations after the sale.

Sooo much help from so many wonderful people who I love dearly and am privileged to have in my life. My biggest thanks has to go to my husband Ritchie who has always supported my charitable “adventures”, and who put in so much effort for the garage sale. He is such a trooper! 

I’m very happy to say that the garage sale raised $1,400 and we are still selling items online, so hopefully the amount will grow a bit. The ALS Society has been a huge resource for me over the past year that I am happy to give back. Besides loaning me a scooter to do long “walks” with my husband and dog, the Society has provided me the opportunity to gather with others who also have ALS (via Zoom) to share information, visit and provide support for each other. These visits are very important to my mental well being and I am sad when I have to miss one.

I am hoping that this small gesture will encourage others to do something similar. We have all received and we all need to give back!

Making It Possible Day 16 - Staff Highlight: Marie Nicholson

Hi, my name is Marie Nicholson. I have been with The ALS Society of Alberta for 12 years as office assistant. I was unemployed from the IT industry, and with my experience as a volunteer/executive for a service group, I was given the opportunity to be part of the community.  My organizational skills, paired with the ability to multitask between all departments and work as a team, allowed me to work for the benefit of the clients and their needs, even if it is behind the scenes. I have stayed because the work we do to make every day a better one for our clients is fulfilling and satisfying for me. Seeing the families and helping to make their life easier with our equipment and other resources has been a joy.  Watching their smiling faces light up at Betty’s Run for ALS, being surrounded by family and friends supporting them with help from our equipment program, or securing a new piece of equipment that makes each day easier for them. The ALS team is amazing working together as one, making our clients the priority and enjoying working with each other.

Making It Possible Day 15 - Cruise For A Cause

Hello, we are Dean and Karin Wallace, ALS has touched our lives multiple times over the last 15 years. In 2005 Dean’s Dad, Glenn was diagnosed with ALS and he died in 2006. The time from diagnosis to when he died was not long and we lived in another city so we didn’t live the everyday of the disease. Then in 2016 Dean’s sister, Karen was also diagnosed with ALS and again we were far away, so we didn’t see the everyday, but we heard how Karen and her family were supported by ALS Society of Alberta until her passing in 2017. In 2018 Karen’s husband and sons started Karen’s Purple Shirt Party to raise awareness and funds to support ALS Society of Alberta. In 2019 Dean’s cousin in another province was diagnosed with ALS and she also lost her battle. In 2020 a good friend of ours was diagnosed with ALS and he continues to battle the disease with support from the ALS Society of Alberta.

So, although it was not one of us living and battling ALS we have seen the incredible work that ALS Society of Alberta does for people and their families living with ALS. We wanted to support the ALS Society in some way. I was thinking about the Ice Bucket Challenge and as a travel agency owner I thought we could take that to another level. Why don’t we do a Cruise for a Cause in the Ultimate Ice Bucket, Alaska.

On July 1-7, 2023 join Expedia Cruises in Chestermere to support ALS Society of Alberta onboard Holland America Lines beautiful ship the Koningsdam sailing Alaska roundtrip out of Vancouver. A portion of each fare will go directly to ALS Society of Alberta. We hope to have some special events onboard.

We see how ALS Society supports families and we are blessed to be part of the Expedia Cruises family. A few of the other offices in Alberta have joined my office, Expedia Cruises in Chestermere to support this cruise for ALS.

For more information about how you can join us in the ultimate ice bucket without getting wet, please contact us at Expedia Cruises in Chestermere. chestermere@expediacruises.com 403-263-3500.

Making It Possible Day 14 - Allan Simon

The photos above are from Allan’s “Bridge and Dinner" at-home fundraiser from Thursday, May 19th. He and his wife Meredith had the bright idea to invite eight of Alberta's best known tournament bridge players to their house for a mini-tournament and a traditional Austrian dinner, with 2 bottles of fine wine as reward for the winners. Allan participated in his autographed Mikael Backlund Flames jersey.

“A good time was had by all. Not surprisingly, many-times Canadian champions Judy and Nick Gartaganis  (on the left in the bottom-left photo) emerged as winners.”

They then asked for donations to the ALS Society of Alberta, raising $750 for our ALS families!

“I believe  the main point is that people are happy to donate when they are offered something enjoyable in return. We plan to invite a different, and larger, circle of friends for a lobster dinner on June 18th to raise more money. And of course my wife Meredith will run Betty's run again. We are so grateful to the Society, it has meant so much to us in the last three years.”

Allan’s creative and fun methods of support are a huge inspiration to us and our ALS families. Thank you Allan and Meredith!

Making It Possible Day 13 - Patricia Latremouillie

Patricia did a Making it Possible for us in June of 2019. Our Client Service Coordinator, Michelle, thought of her for another Making it Possible because “to me, she is someone who sees the possibilities for new experiences and adventure despite the many challenges that living with ALS presents.”

Her message to others living with ALS is “Don’t let ALS hold you back from living your life.” Patricia describes herself as someone who has always had an adventurous spirit, despite having to ‘make adjustments’ to plans because of ALS.

Michelle recounts her initial meetings with Patricia, just after her diagnosis: “When we were chatting, Patricia reflected on how very disheartened and down she felt after receiving her diagnosis. She was initially diagnosed with PLS in 2013, but in 2014 her diagnosis changed to ALS. However, she says that she realized she could still do the things that she loved.”

When asked what enabled her to carry out her plans for adventure, she said hard work, perseverance and the support of her husband Paul, her family, and friends. She also emphasized that having equipment, such as the power wheelchair on loan from the ALS Society,  allows her to continue having  adventures. Below are just a couple of adventures that she has had in the last year.

Last summer, she and her husband Paul went camping in a tent. She said that she wanted to “chill and take in the fresh air,” and share the experience of camping with her grandchildren. Due to her limited mobility, Patricia would not be able to get up off the ground if she were to sleep in a sleeping bag on the tent floor, so, instead, she slept on a sleeping cot inside of the tent. For the trip, she brought along a power chair and walker on loan from the ALS Society, and with the help of her friends and family, including her grandchildren, she was able to explore the campsite and enjoy “chilling in the fresh air”!

This past March Patricia marked her 70th birthday with her first trip back to the UK in 8 years. One of the highlights of the trip was a joint birthday party for herself and her sister, as the two mingled and celebrated with over 100 guests. She said that she and her husband Paul were treated like “the King and Queen”! She was excited to mark the occasion of her birthday with another special event. She was absolutely delighted to share ‘Devonshire Cream Tea’, a very special British tradition, with family and friends.

Upon returning to Calgary, the adventures have continued. Despite feeling discouraged by some difficulties with their accessible van, Patricia continues to see possibilities and create moments. She used her loaned power wheelchair and booked a day at the zoo through Access Calgary, with her daughter Katrina and grandkids.

As for upcoming adventures…Patricia is hoping to camp with her family and friends once again this summer. We love to see the way that Patricia’s unbreakable spirit and her loaned equipment continue ‘making it possible” for her!

Making It Possible Day 12 - Neill Fearnley

I am honoured to be Ambassador for the 2022 Betty’s Run for ALS, especially as we all anticipate coming together in community after two years of virtual events. While I have not been a client of the ALS Society of Alberta for very long, one thing which really strikes a chord with me is, that sense of community and togetherness those of us living with ALS in Alberta feel. And to have been chosen as Ambassador in the year that gathering again means so much – it’s a true privilege.

ALS affects people of all ages, backgrounds, and career paths.  I have had the pleasure of working in the film and television industry as a director and producer, living back and forth between Calgary and Vancouver for years. When COVID hit, the film I was working on shut down and my wife Karen and I decided to hunker down in Calgary. However, in May of 2020 and just two months into the pandemic I started to notice that something wasn’t quite right. I developed a drop foot and other mobility issues, and the months of tests began. Like so many, I went through the process of eliminating everything else we thought it might be – neuropathy, post-polio syndrome, MS and other diseases. But in August of 2021, while I was back on the coast working on a TV series, the ALS diagnosis was confirmed at the Clinic in Vancouver.

At that point, we decided that living primarily in one province would be a good decision, and after I finished the project I was working on we sold our place in Vancouver. We had our first appointment at the Clinic in South Calgary, and that’s when Michelle Savard entered our lives, and I was introduced to everything that the ALS Society of Alberta could offer our family.

While I am still quite new to the Society, I have been so impressed and touched by everything that is offered. I know the Equipment Loan Program is incredibly important, but what has really affected me at this point in my diagnosis are the connections that the Society provides. And especially after two years living through a pandemic, I am reminded how truly important is the need for human connection. The support groups, with whom I’ve met virtually, provide so much knowledge and assistance from others going through the same thing. I have most appreciated hearing other people’s experiences and perspectives. At the Society, everyone is open and communicative, wanting to help and provide as much knowledge and support as possible. ALS can be a disease of isolation, especially in recent times. But the ALS Society of Alberta has provided that human connection through it all, and that is perhaps what I appreciate most.

While all our stories are so very different, we are never-the-less connected through our journey with ALS.  This will be my first Betty’s Run for ALS, and I am so very much looking forward to the Calgary ALS community coming together again for the first time in over two years to share those stories once more in person, on June 12th.

Making It Possible Day 11 - Dennis Rommel

My name is Dennis Rommel, and I am humbled and honoured to be chosen as Ambassador for the 2022 Walk Together for ALS event taking place in Edmonton on June 11.
 

I was diagnosed with ALS in December of 2020. I had been experiencing symptoms for three to four years. In September 2017, my mobility became quite challenged, and I went on long-term disability before retiring in the fall of 2019.

After a fall at home, I spent three weeks at the Royal Alexandra Hospital in November 2020 and underwent many tests. I was originally told I may have PLS (Primary Lateral Sclerosis). I had my first appointment at the ALS clinic on December 1, 2020. During that first appointment, my diagnosis was changed to ALS. It came as a huge shock when I first heard those words. December 1 is also my wedding anniversary to my wife, Lorna, of 42 years.

My main support system is my family. They have been great on a daily basis and always available to talk or just listen. I’ve also been connected with a support group where I’ve met so many wonderful people that are going through similar challenges. The ALS Society has given me so much support, as well. The mobility aids I’ve been provided with have improved my daily life significantly.

I’m looking forward to the walk on June 11, and I hope that people will consider supporting the ALS Society of Alberta.  I am extremely grateful for the ALS society and all that they have done for me and my family since my diagnosis.  They have made this extremely difficult time so much easier.  In closing, I have a quote to share from a book I’ve been reading “Perspectives – 17 things I learned about living your best life while battling a terminal illness” by Wayne Thomas:

“One day at a time – that is enough. Do not look back and grieve over the past for it is gone, and do not be troubled about the future, for it has not yet come. Live in the present and make it so beautiful it will be worth remembering. Happiness is a journey, just as life is. Enjoy the ride.”

Making It Possible Day 10 - Judy Lien

After countless appointments and tests, Judy was diagnosed with ALS in September 2019. It was then that Judy and her family discovered the hidden treasure of the ALS Society. Dr. Wendy Johnston, at the ALS Clinic, along with her staff, provided much needed support through in-person Team Meetings and many phone consultations after COVID hit. Whenever a need was mentioned, the ALS Society provided it within days. A porch lift in the garage enabled Judy to go out and join neighbours having coffee in the garage – this continued even when COVID required everything to be locked down. Other equipment from ALS Society included a wheelchair, a lift for getting into bed, a cough assist machine, raised toilet seat and many small items that made life easier.

Judy’s huge “Rachar” family holds a raffle each year at their annual Family Christmas Party with proceeds going to a charity of choice.  In 2019 the proceeds were offered to Judy and her family to assist in her care. Judy, in her typical big-hearted way, insisted the funds instead go directly to the ALS Society. Judy worked for 40 years in a long-term care facility as a Care Aid. She often went in to work after hours to help if they were short staffed. She loved working with the elderly and was affectionately known as “Momma Judy” by the younger staff she so eagerly mentored. Her wacky sense of humour saw her through many tough times, especially during her illness. Judy loved to entertain family and friends, sew, and garden. If you ever left her house hungry, that was your own fault. When she was no longer able to cook, she gave instructions and recipes to her partner, Ed, preparing him for his future without her. Caring for others was Judy’s nature. Right up to her last days, she continued to care for everyone around her, including the Home Care aides who assisted in innumerable ways.

Judy passed away January 22, 2021, in the arms of her loving son with other family close by. Her mischievous grin and the sparkle in her eyes will always be remembered. ALS never dampened her spirits, and in so many ways, she was stronger than those she left behind. The poem below, written by one of Judy’s Home Care aides, shows the true impact she had on others. She is truly missed, and always remembered with a full heart.

 Love: Ed, Todd and Audrey XO

Judy I love you so much today

I want to say that you mentored me from that chair

from that place that you are in right now, everyone of us

came through that door broken and left better than

when we came in. how many people actually do

something to fix broken people, you did, you didn’t care

what it took to fix a broken situation, you did it

anyway, the love I witnessed for your life partner Ed, it

was so amazing to see you hold each other up. I was so

incredibly blessed to have been a part of your

journey, your love for your dear Todd, how he knows you

will always be his safe place, you taught me to be

the most amazing mom and to fight like hell for my kids

always both feet in. Audrey was the keeper of your

heart, you let her know you will always be there when the

world closes off. she can still speak to you and you will

hear her. Judy in an unapologetic way, you held Steve’s

hand on Friday and between the two of you I witnessed

a promise that he will keep your sister’s heart, I love you

my dear friend, so very very much. I thank you for your

years of service that you gave to everyone in your career

as a healthcare aid but as a family member most of all. I

love you for taking me in and teaching me to love and to

be merciful, from that chair in that body you taught me

to love so fiercely, always know that I will be the best

damn HCA because of you.

~ Miriam Hofer

Making It Possible Day 9 - Calgary Clinic Team

The ALS Clinic at South Health Campus, Calgary has been a long standing partner with the community: a committed group of individuals that go above and beyond their role supporting families affected by ALS. Each member of the team has a distinct background and specialty, but they all strive to provide individualized care based on your unique needs. 

In addition to their crucial roles at the Clinic, the team supports and participates in the ALS Society’s fundraising activities and events! Year after year, they participate as a team in Betty’s Run for ALS, because they know that together we can make a difference.

We want to give a heartfelt thank you to the team at the ALS Clinic for making it possible!

Making It Possible Day 8 - Sheldon Watt

Back in March, we were inspired to hear about Sheldon Watt’s community supporting him at a Charity Curling Bonspiel, held by the Carbon and District Agricultural Society and Curling Club. The longtime volunteer and club member had recently been diagnosed with ALS, and friends came out from across the province to support Sheldon, Laurie and the rest of the Watt family. A total of 16 teams took part, and $10,550 was raised for the Watt family to help cover their additional medical and home modification costs.

However the Agricultural Society also made a surprise $3000 donation to the ALS Society of Alberta, knowing the support that we give to families such as the Watts. We wanted to take this opportunity to share Sheldon’s story, while also thanking the Carbon and District Agricultural Society for their amazing spirit and generosity.

Early in 2020, Sheldon Watt noticed that something wasn’t right while working as a partsman. His hands were cramping up and his arms were progressively getting weaker, making it difficult to pull inventory off of the top shelves. By February of 2021, with doctors having advised him to keep an eye on the cramping but without much further assistance, Sheldon retired from his job as he just wasn’t able to perform the role anymore. After pushing his doctor, he finally was sent to Kinesis, who then referred him to the ALS Clinic in South Calgary.

Sheldon was asked at Kinesis if he had any hunches or thoughts as to what the issue might be – and he immediately let them know that he thought it might be ALS, as his dad passed of it in 2003. However, with no other cases every recorded in the family, it did not appear to be a case of familial ALS. After his diagnosis on July 14, 2021, Sheldon underwent genetic testing – first for the two most common genes that cause familial ALS, and then when those were both negative, for a much wider test of less common ones. Again, all negative. From all accounts, this is a very rare case of two genetically unrelated cases of ALS in the same family.

Since receiving their diagnosis, Sheldon and Laurie and their children and grandchildren have adapted and continue to move forward together. Unfortunately, the Class A motorhome that was just purchased and meant to continue their long-standing family tradition of travel and camping was returned to the dealership. That was a hard moment for them. But watching the disease progress and affect his mobility and strength forced the decision.

However, Sheldon is so incredibly positive about some of the other aspects of this change in life that ALS has brought. For example, Laurie is retired and is now his caregiver, and he loves spending so much time with her that they weren’t able to before. He also notes that the ALS Society is always one step ahead with adaptive equipment, sending out recommended items to see if they will be of help, and always ensuring that they have what they need. Sheldon expands on his experience and advice here:

“I am really enjoying the ALS Society Support Group Zoom calls. I get the chance to meet other people fighting the same battle. Everyone is so positive and that sure helps, seeing other people going through it.  It is good to see other people dealing with this and how they are doing. We are all connected by this disease, and seeing people have a positive outlook is great.”

“In addition, my extended family (four sisters and their husbands) have all been a great help, everything from driving me to infusions, to helping move stuff. One of my sisters came out to get an electric scooter from another friend on my behalf. The community support is also incredible, from the Agricultural Society to the Lions Club, to individuals in the area - they support in any way they can.”

“It’s a hard thing to do, to ask for help, when you have been the one helping others through the years. Half is physical, the other half is between the ears. That’s almost as hard as what your body won’t let you do, coming to grips with the disease. You have to be able to set pride aside and ask for help, especially considering our caregivers. Laurie needs help too, so we need to take the help that is offered.”

Thank you Sheldon, Laurie and family for sharing your story for ALS Awareness month. And thank to you to the community of Carbon for your incredible support and generosity as well!

Making It Possible Day 7 - Staff Highlight: Rob Lognon

Rob Lognon, one of our dedicated Client Services Coordinators, has spent 6 years with The ALS Society of Alberta. 6 years is plenty of time to make meaningful, long-lasting connections with our families affected by ALS. Rob, with his hard work and dedication, is no exception! When asked what made him want to join the Society, Rob said “the amazing opportunity to serve people who really need help at a critical moment in their life through an excellent organization.”

He cited his impact on clients and families as a main reason for staying: “I feel like I am able to really make a difference. I’ve also met so many people who have impacted me and taught me a great deal.” A story about one of those people that have impacted Rob’s life helps to encapsulate the tangible benefits of ALS Alberta. “I had a client who had a very active social life. She always looked forward to visiting with friends who would come over any day of the week. Eventually she found it more and more difficult to climb the stairs to her second storey bedroom toward the end of the day. So we installed a stairlift at the request of her occupational therapist. She was elated! She told me that that stairlift gave her at least two extra hours every evening. Before, she would have to gauge her energy and often had to go to bed early so she could make it up safely. But afterwards, she didn’t even have to think about it. She could enjoy her evenings without a second thought.”

“I think we quickly become a piece of solid ground in a seismic time. Through our client services and equipment programs, we are able to help clients with what they need, when they need it.” We owe our stability and reach to our amazing staff, like Rob Lognon.

Making It Possible Day 6 - Angela and Orest Yarmuch

After much investigating, testing, and the nerve conduction studies, we officially received a diagnosis for my husband, Orest, on November 24, 2017.  This is the day we began the ALS journey. We had no idea this could be the cause of Orest’s changing health so we were completely blind-sided with this news.

Orest’s journey began with him being able to still manage doing everything for himself. I have come to realize ALS keeps taking little nibbles of a person and slowly it means needing more and more help. It also means eventually not being able to take part in those things one found so enjoyable; especially, those things enjoyed with the grandchildren – very sad realization. Not being able to visit our families in their homes is sad too since their homes aren’t equipped to handle Orest’s special needs. Now they come to us more often and that’s a good thing too. Dinners together, sleepovers, weekend visits at our home make so much difference for Orest.

I am writing from the perspective of a spouse who is fulltime caregiver. As ALS nibbles away at my husband I have had to come to terms with our new life. Though I am at home most of the time, I find this has become my unexpected blessing/opportunity to spend the time I would like to finish those family scrapbooks along with other hobbies I enjoy. So, I would have to say that is my “Making it Possible” to continue this journey.

Orest, generally, has come to accept his condition & only occasionally gets frustrated that he has become so dependent on me. We have given me the title “ULPN – Unlicensed Practical Nurse”. It gives us a laugh when one is needed. We have also begun saying that we are regularly ‘editing’ how we do things for him. That gives us another little laugh. As his dependence has increased, I find myself saying in my head “How would I want to be treated if this was me?” This, along with my faith, has helped me so many times. Being in the body that ALS is nibbling away at is far more difficult than doing the practical things needed to make a new day as enjoyable as possible. I would say this is Orest’s “Making it Possible”.

We are both so thankful for all the care and support we receive from Homecare and the ALS Society. Recently it became urgent to have a lift installed in the garage. From my call to Homecare, having an assessment, then ALS being here to do the installation, was only a matter of days. Our immediate family members have their concerns but that seems alleviated when they see how quickly Orest’s needs for equipment, etc. are met. Feeling alone in this journey is gone knowing we have this caring support and encouragement behind us.

To all the spousal, family, friend or professional, caregivers out there; be encouraged for you are most certainly Making it Possible for your ALS person to keep going on their ALS journey.