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.

5050 Winning Ticket Numbers!

Thank you everyone who bought tickets for our June 5050 Raffles! The winning ticket numbers are listed below, and the winners have been contacted.

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.

Making It Possible Day 5 - Strings For A Cause: Louis Sousa

Leading up to our dad’s diagnoses we noticed  whatever neurodegenerative disorder he had was progressing rapidly. From June 2020 to May 2021, Louis went through a lot of changes within his body; these included his ability to speak, and his ability to swallow which eventually led to drastic weight loss. In May 2021, Louis made the decision to receive a peg tube to give him the nutrients he needed.

The muscles that were responsible for breathing were becoming compromised. In early 2021, he was introduced to the BIPAP machine. The Bilevel Positive Airway Pressure is a type of ventilator that helps with breathing by pushing air into the lungs opening them up. When it became apparent that he was having a difficult time breathing, on his own, he was urged to use the BIPAP as often as possible. He struggled getting comfortable with it.  The lack of use of the machine made it nearly impossible for his lungs to filter out the carbon dioxide from his body causing some cognitive and behavioural changes. He was introduced to oxygen in July of 2021 (this can be dangerous for ALS patients due to their lungs not filtering properly).

With his continued struggle with the BIPAP and the added oxygen he eventually went into respiratory failure on July 9 of 2021. We thought that was it, we thought that was the day that we would lose him, but thankfully he woke up the next day in the hospital. We were blessed with another 2 months with him. 

We can’t attest to what it’s like to watch someone go through limb onset because our dad never lost his mobility; however,  in his final days he did become too weak to walk and hold himself up. Losing our dad was something we thought we had been preparing for since his diagnosis.  When we lost him we found out that we were nowhere near prepared nor would we ever have been. He was the heart and soul of our family; he was the best man we had ever known. We will miss him dearly until we meet again.

Making it Possible Day 4 - Lori Huolt: Camrose Ambassador

My personal journey began on March 14, 2019. I had just returned home from a lovely trip to New Orleans for Mardi Gras. I had an appointment booked with my neurologist the next day. I was still in holiday mode and on top of the world. As we did my tests I was excited to shares stories about my vacation and a new granddaughter. Life was good.

Then I received the news... you have ALS. At first, I was numb then I realized this was my new reality. As I shared my news with family and friends I felt a strong feeling of love and support. "This is now going to knock me down without a fight," I thought. I am going to live life to the fullest every day.

At first, I was having slurred speech and losing the use of my right hand. In 2021, 2 1/2 years later, I have lost my speech and have weakened arms and legs. My determination keeps me going. I was fortunate to be selected 1 year ago to participate in a promising clinical study that reduces progression by up to 33%. I believe I can beat the odds of the 2 to 5-year life expectancy.

I am so blessed to have a wonderful family. My husband of 34 years is by my side, his love and support are unbelievable, the kind of love every girl dreams of. My two grown sons and daughter-in-laws are in constant contact with me or see me every day and always followed by "I love you". They always make me laugh so hard I cry. Then there are my 2 granddaughters. My favorite words are "I want to go to Gamma's house", they are my everything.

My friends are always there for me, texting to check up on me or just to send me their love. Sooo... that is why my life is good even as I battle this horrible disease. As most of you know there is no cure or ALS at this time as we continue to raise awareness and help fundraise research for this very underfunded disease, I hope one day we find the cure we so desperately need.

2022 UPDATE:

I have been blessed to add 1 year to my personal journey. So much has changed…I have lost speech but have gained a communication device. I can no longer walk but have gained a wheelchair and a van to go wherever I want. I have lost the use of my hands but have gained the helping hands of my loving husband, family and friends. It’s not what we lose in life but what we can do to make our lives better!

My Motto is and always will be to stay strong, stay positive and never ever take anything for granted. We are all blessed.

Making It Possible Day 3 - ALS Coffee Group North

It’s 1:30pm on the second Friday of the month. One by one little boxes appear on the screen, with their names in the bottom left corner, giving the only clue to who’s behind the darkness that precedes their reveal. For the regulars this group is kind of a second family. I can sense a slight feeling of anticipation to see who will actually appear on the Zoom screen, because doctor’s appointments, a poor sleep the night before, or the general busyness of living with ALS make it hard to always show up. In short order we have our answer. There are 8 clients today. Zoom has been a necessary transition because of the pandemic, but it’s also afforded people the ability to connect with others across Northern Alberta. Vermillion… Barrhead… Edmonton… St. Albert… Morinville.

There’s Nancy in her kitchen… then Colleen with stylish wallpaper as her backdrop... Richard with the safe blurred background so we can’t see how messy his kitchen is. Jim comes on and in hushed tones, says goodbye to his wife who is on her way out the door. She leaves the frame, but then does an about face and leans into the picture with a big hello to the group. There’s a refrain of hellos! Dennis and Lorne are regulars. Lorne is there with his BiPAP on, making it a little hard for him to talk, but not to listen. Dennis, our 2022 Edmonton Walk Ambassador, is leaning in, trying to read the tiny lettering of everyone’s name, welcoming everybody by name. Morgan shows up, a little reserved, since it’s only his second time, but that quickly fades as the group draws him in. The always affable Danny comes last, rounding out the group with his wit and smile, bringing a boost of energy to the group.

After the round of greetings subsides someone asks where so-and-so is? “I think they said they will be vacationing in BC this week,” Colleen says. The regulars know each other. And the new people are not strangers for long, just family that haven’t met yet. It’s a community of kindred spirits that have gathered from across the province courtesy of technology. A group of individuals that are as different, as they are the same. That likely never would have crossed paths. Save they all share one common, terrible thing: an ALS diagnosis. And that has forged a bond not often seen.

We take turns going around the group, sharing our updates from the month. One person shares that for some reason every time he brushes his teeth, he cries. Someone chimes in, “me too!” The rest nod in solidarity. A discussion around mental health ensues. “Maybe we should get a speaker to come in to talk about it?” “Great idea! I see a counselor I was given through the ALS Clinic who would be perfect!” Several others concur as they have seen the same counselor.

One of the women shares how when her hands aren’t working right, she is driven in circles, “is this ALS? Or arthritis? Or is it something else?” There’s a chorus of agreement. “It happens all the time!” Richard says he feels like a dog chasing his tail, “Is it the meds? ALS? Something I ate?”

Someone shares they are thinking about buying an accessible van and asks for advice. Even though they are still mobile, they want to be prepared. Jim gently suggests that maybe they’re “overthinking it.” It’s so hard to prepare when ALS doesn’t follow a set course and goes where it goes. Maybe you’ll never need it? Morgan remarks that ALS is so different for everybody. Lorne offers what worked in his situation. Nancy empathizes, “If it’s any consolation, my mind always jumps ahead.” It’s hard not to.

One of the guys asks if swollen feet are common and that leads to a range of helpful, and some amusing remedies, thrown into the pot of communal wisdom. He takes notes and promises to report back next meeting on what worked.

Danny says, “this is what makes this group special, everyone’s eyes are different.” They see solutions that you might not see. Jim says that after he was diagnosed, he felt like “a bug swimming in a bowl of water.” Looking for anything to grab onto, but not able to climb out. “This group is fantastic,” he says, “it helped me take it one day at time!” Richard says this group has become a safe place. “This group is a second family, where you can talk about things you might not want to talk about with you own family.”

Time flies and before you know it, it’s time to say goodbye. Farewells are said and one by one the screens disappear. This family of ALS warriors have helped each other make it possible to carry on and fight another day.

Making It Possible Day 2 - Bill and Angel Redisky

Bill is a carpenter by trade and has always loved the outdoors. Fishing, camping and travelling have always been high on his list. We spent a ton of weekends with our four kids quadding in the mountains or fishing the riverbanks.  Bill and I started travelling in 2005 and have always tried to get a trip in every year. 

Bill was diagnosed April 6,2020 - right at the beginning of Covid. The time in his life when it's so important to spend time with family and do everything on " your bucket list". We had planned to renew our wedding vows that September and go to Hawaii for a second honeymoon, but Covid SHUT IT DOWN. As ALS progressed - as did Covid .

We became very discouraged. By the summer of 2021, ALS took Bill’s ability to walk, feed himself or do any of his daily care needs. It was then that we decided that no matter what, we had to get it done. Time was not on our side. 

After 35 years of marriage we renewed our wedding vows on July 3,2021. The theme of the wedding was “Moments and Memories". We knew we wouldn't be able to rebook the condo in Hawaii as it was not wheelchair accessible, so we started looking into every all-inclusive resort in Mexico, a place that we have loved for years. 

We faced so many hurdles with equipment, timing, and treatments needing to be done, but it finally all came together in September of 2021. With help from family, friends and the ALS Society we were set to go. 

The trip was the best gift we could have asked for, as it gave us both a chance to have some normalcy back in our lives. We spent our days at the pool where Bill could stand alone for the first time in months with no support. We dressed up for dinner every night. We smelled more flowers and enjoyed more sunrises than ever before. As stressful and as hard as it was to get it all put together it was the best thing we could have done. Bill and I got to step back and " be ok" even if it was for just a little while. It's all about the Moments & Memories…

Angel Redisky

ALS Awareness Month - Calgary Herald

As ALS Awareness Month kicks off today, the Calgary Herald has published an article about our efforts in the coming weeks, including the 26th annual Betty’s Run for ALS. We’re honoured to have this chance to highlight the families in Alberta affected by ALS, and our mission to support them. To read the article in full, please visit the Herald Website Here.

Keep an eye out this Saturday for the article in print as well!

Making It Possible Day 1 - ALS Awareness Month Feature

To kick off ALS Awareness Month and our Making it Possible series, we are excited to share with you a segment on the ALS Society of Alberta done by Global Edmonton’s Trending program.

This video features the stories of three of our families – the Williams family, the Rommel family, and the Spelliscy family. 

Please take a few moments to watch this video and share with your friends and family. And thank you to the Global Edmonton team for taking the time to learn about ALS and raise awareness about the disease. 

https://youtu.be/dE3FalKaLFo