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

50/50 Cash Raffles are Back!

We know that you enjoyed our 50/50 raffles in 2021, and we are hosting two in conjunction with our upcoming events in Alberta during ALS Awareness Month! There is one coinciding with Betty's Run for ALS in Calgary, and another with of our Walk Together for ALS events across the province. Not to stoke the battle of Alberta fire... but let's see which sells out first! Cash prizes will be 50% of total ticket sales, up to a maximum of $10,000 per raffle. All of our previous 50/50s have sold out with the maximum cash prize awarded to a lucky winner.

Winning tickets will be drawn on June 13th. Funds raised go towards our support of Albertans living with ALS. Get your tickets now to support a great cause, and for your chance to WIN!

Walk Together for ALS:

https://www.rafflebox.ca/raffle/walktogether

Betty’s Run for ALS:

https://www.rafflebox.ca/raffle/bettysrun

The ALS Run for the Cure - Delburne, AB

Coraleen (aka Corky) Jones is a force of nature. A barrel racer with the empathy and energy of ten people, she is loyal to and passionate about her community of Delburne. These traits were evident when Corky and co-host Laurie Bresee recently organized the massively successful ALS Run for the Cure Barrel Racing event at the Delburne Agriplex, raising $24,575 for the ALS Society of Alberta.

Corky was initially inspired to host this event by neighbour Lyle Craig, who was diagnosed with ALS this past year. The disease has tragically been part of the Craig family, and Lyle is the fifth member of the family to be diagnosed. On top of that, there are many other families from this small community and area that have also been affected. The impact of this disease on so many people in her community, and watching how it affects those families, lit even more of a flame to make this idea a reality.

With Covid rules loosened, Corky felt the timing was right for an event to bring ALS to the forefront with a charitable effort in honour of the Craig family. And in doing so, she discovered that many others in her world even outside of Delburne have also been touched by ALS. This expanded circle all wanted to help in any way they could, to raise awareness about ALS and funds for the ALS Society of Alberta.

Buoyed by this support from the Craig family and local ALS Community members, Corky and Laurie put together a spectacular event. 130 barrel racers, almost 100 silent auction items, ALS hats and buffs, candy apples, baked goods… It was an epic event, full of so many wonderful people all there in support of ALS and fundraising. And following two years of Covid restrictions, it was an opportunity for the people of Delburne to gather at the rink, see neighbours they hadn’t seen in a long time, and come together to support one of their own. As Corky says, “It was kind of a perfect storm in regards to timing, and ended up being such a feel good day for everyone. It’s what we do in Delburne – we take care of each other. If someone needs help, we help them. Barrel racers too, we are all part of western heritage and everyone just steps up.”

There were many highlights that day, but for most in attendance their favourite moment was Lyle’s son Jason, who is severely allergic to horses and has never ridden, putting himself out there in front of all his family and friends and doing a timed barrel race – guesses were made on how long it would take, and whether he would manage to complete the course properly. Donations made in honour of Jason’s ride totaled over $1200.

Many moments in Delburne brought tears to our eyes… it was a sense of community not felt for a very long time, due to Covid and the lack of events. Our ALS Society staff was incredibly moved by this event, and the people we got to meet. Thank you to Corky, Laurie, the Craig family, and everyone else that spent so much time and energy putting this day together. We can’t thank you enough.

The Return of Events! Dueling Pianos in Drayton Valley

The incredible Drayton Valley Walk Coordinators, along with their dedicated volunteers, hosted one of the first big fundraising events of the season (and in fact since 2020) in support of the ALS Society of Alberta. The Dueling Pianos event held at the MacKenzie Centre on April 9, 2022 was a massive success, raising over $25,000 to support the ALS Society and those living with ALS in our communities.

This dedicated team is made up of sisters Melanie and Marcie Pruden, cousin Kayla Leeder, and Nicole Tymchak, longtime family friend (aka the “third daughter”). These women have been dedicated event planners and fundraisers for the past five years, following the passing of their mom and aunt, Audrey, from ALS in 2016. In addition to planning the annual Drayton Valley Walk Together for ALS event, this team of women started the Dueling Pianos in 2019, and it has become a much-anticipated event in the community. This year, it was sold out with nearly 400 people in attendance, featuring a 5-hour continuous performance by Tim Cotton and Kelly Alaina from Court Jesters Dueling Pianos, and special guest Sean Sonego.

The event featured not just live music, but a silent auction, a raffle for a wheelbarrow full of beverages; catering supplied by the White Bull Café; and a slideshow to help raise awareness and educate attendees about ALS. The generosity of many sponsors made the event a success, and we are so very thankful for all of their support.

Audrey loved to cook and entertain, so the team was adamant not to run out of anything throughout the night. Nicole says that they know Audrey was proud of what they accomplished because when they were driving home, they saw the Northern Lights which they have always believed is Audrey dancing in the sky with their Grandpa Hubert.

We are so grateful for this determined team of women and the amazing work that they do in memory of Audrey – thank you Nicole, Melanie, Marcie and Kayla – we can’t wait to see you at the Drayton Walk on June 18th!

The 2022 Edmonton Walk Together for ALS Ambassador - 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.”

The 2022 Betty's Run for ALS Ambassador - 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.

visit bettysrun.ca for more information

A Tale of Two Chairs...

Sometimes amongst the day-to-day work that the Society does to help our families, we are confronted with remarkable stories that jump out at us. Two such stories have made their way through our staff recently, and we wanted to share them with you. They show, once again, how every donation made helps so many people living with ALS in this province.

The first story involves a wheelchair donated to us back in May of 2000 – over 20 years ago! This chair became a part of 15 different families’ lives, helping them or their loved ones remain mobile while living with ALS. The chair went out to 15 different clients over its 21 years with us – each time returned, cleaned and sent back out to a new family when required. This piece of equipment was removed from the loan program in October 2021, after 21 years of service to our families in Alberta, when it was deemed no longer suitable for someone with ALS.

This chair still had some life left in it though, and wasn’t ready for the scrap heap! So our Equipment Manager Trevor, pictured here, took it down to the Drop-In Centre where it is now being used by the clients there. So that chair donated in 2000, which helped at least 15 Alberta families living with ALS, is still being used to help people today. That’s the incredible difference just one donation can make.

The second story once again deals with two charities helping each other, but in this case, we were the recipient of such a donation. In January of this year we were contacted by Terry Fox Foundation volunteer Vickie Key, about a potential power wheelchair donation. A family had made a donation of an exceptional piece of equipment to The Terry Fox Foundation and she felt it would be a better fit for the ALS Society of Alberta.  Vickie was a former hospice nurse that spent years working in the community, and therefore knew very well the needs of our clients. She also knew that this chair would be of great use to many of our families as they dealt with the loss of mobility caused by ALS.  While the donating family initially wanted the chair to go to someone in the cancer community, they ultimately decided that donating it where it was most needed and would be put to good use was the best choice, and agreed with The Terry Fox Foundation’s suggestion to donate it here.

This exceptional chair, pictured below, will make such a difference to so many of our families. Thank you to our anonymous donor family, and The Terry Fox Foundation and Vickie, for recognizing what a gift this will be to our community.

Highlander Wine Giveback Sale

Cheers to the elegant Highlander Wine for supporting us with their Giveback Sale this month! As their charity partner, 50% of the proceeds from their favourite sale of the month directly support us and our ALS families. Their support is greatly appreciated!

Help support us while also treating yourself to some fantastic wine!

Find out more at:
https://highlanderwine.com/give-back-online-sale