Making It Possible Day 15 - Edana Gust

My name is Edana Gust.  When I was diagnosed with ALS on April 1, 2019, I told the doctor that it was April Fool’s Day and I was hoping he was joking.  He assured me it was no joke.  My husband Doug and I were just numb from the diagnosis.  I’ll provide a little background on how we arrived at the diagnosis.  A year or so earlier, I had noticed some discomfort with my right knee, and we started a process to find out what was happening.  The consensus was that it was osteoarthritis, but nothing seemed to be helping and my mobility and balance were beginning to suffer.  In December 2018, my voice changed and there was concern that perhaps I had suffered a stroke.  All the tests for heart conditions came back negative so I was referred to a neurologist.  After a CT scan and MRI, I was scheduled for an EMG on April 1 and the diagnosis of ALS was made. 

The next month can be described as a grieving process where we wrestled with the reality of the diagnosis and came to grips with what the future might hold for us.  Life is a journey, we don’t get to pick what’s placed in path, but we can choose how respond to the unexpected.  Fortunately I didn’t have to wait long until I was able to attend my first ALS Clinic where I was able to meet the amazing resources dedicated to supporting those living with ALS.  I met Michelle with the ALS Society shortly thereafter Rob came for a visit.

We were living in a two-story house and owned a bungalow style condominium that we had as a rental property.  We began plans to renovate the condo and make it “wheelchair accessible”.  What a blessing to eliminate stairs and have everything on one level!  The ALS society provided a porch lift, a scooter, and a walker, so I had my mobility back!

My speech continued to deteriorate, and I met the speech therapist with ACETS to began learning the fine points on use of speech devices.  I now have my speech device and know how to teach it my favorite phrases.

I have been blessed with incredible support from friends and family and we keep in touch through zoom and “socially distanced” visits.  I am thankful that I can continue to knit and crochet.  In 2020, I set a goal of knitting 20+ sets of toques and scarves for my brother to give as Christmas gifts.  I started them in July and completed them by September.  I then began a quest to complete an afghan for each of my nieces and nephews.  The first 20 were complete in time for Christmas.  The next twelve are now complete.  In the midst of the afghan project, I did 7 baby blankets for the new additions to the family, and 40 preemie hats.

I am grateful for the ALS Society and the support they continue to provide.  It was wonderful to be asked to share my story.

Making It Possible Day 14 - Stephen Fairley

Stephen and Sharon

One morning in November 2019 we were having coffee in bed and Stephen did not feel up to going to a retiree’s luncheon so I found a picture of a puppy that was available and we agreed to drive to Red Deer and interview this pup.  Little did we know this was the onset of Stephen’s ALS and the beginning of a love affair with little Patch.  Although Stephen’s breathing continued to deteriorate finally resulting in an ICU admission December 26 and eventual diagnosis of respiratory onset ALS in March 2020 Patch provided such joy to our lives.  Stephen smiled more than in our previous 35 years of marriage.  Since then, the ALS Clinic and the ALS Society, and in particular, Michelle, have provided such unwavering positivity and support.  Of course COVID has impacted everyone but it terrified us with Stephen’s difficulty breathing.  The ALS Society providing Stephen with a motorized scooter enabled him to go on walks with Patch and I.  This way we were able to still greet neighbours and enjoy the outdoors.  Since then, we have been incredibly grateful for all of the various assistive aids provided by the ALS Society that have enabled Stephen to continue living at home.  We have also found lots of pleasure in reading the Louise Penny Inspector Gamashe series aloud.  It is delightful to be reading a series located in Canada by such an extraordinary author.

Making it Possible Day 10 - Sea Change Brewing Co. Releases Adam's Pale Ale

This is an incredibly exciting day, as we celebrate the life and legacy of Adam Rombough with this amazing new partnership with Sea Change Brewing Co. in Edmonton. The family and friends of Adam Rombough continue to Make Things Possible, with a new partnership that coincides with ALS Awareness Month. Prime Minister Justin Trudeau concurs, including his thoughts below.

June 10th - Sea Change Brewing Co. has partnered with the ALS Society of Alberta to raise awareness and funds for Amyotrophic Lateral Sclerosis (ALS), in memory of Edmonton community member, Adam Rombough.

After being diagnosed with ALS in 2017, Rombough dedicated his final 14 months to fundraising and generating awareness for the disease, before passing away on May 8th, 2018 at the age of 34. Throughout his battle with ALS, Rombough maintained his larger-than-life attitude, and can be remembered saying “I’m not dying slowly, I’m living quickly.”

To carry on his legacy, and continue advocating for ALS, Sea Change Brewing Co. has crafted their new Adam’s Pale Ale, which was released today, June 10th. For every four-pack sold, the brewery will donate $1 to the ALS Society of Alberta. The brewery is challenging everyone to post a photo or video of themselves cracking open the Adam’s Pale Ale, and to use the hashtag #OneOnAdam to spread awareness.

“June is ALS awareness month, a time to reflect on and reaffirm our support for those individuals who have been diagnosed with this disease,” said Canada’s Prime Minister, Justin Trudeau in a letter stating his support for the campaign. “This important campaign is named in honour of Adam Rombough who died from ALS. His fight with the disease and kindness towards others serves as an inspiration to our nation. Through Adam’s legacy, we are able to come together and support those with ALS while honouring his life.”

In addition to the Prime Minister, keep an eye on our social media channels today for other notable community members that have indicated their support and will be using the social media hashtag #OneonAdam.

Adam’s Pale Ale can be purchased at select liquor stores across Alberta.

Learn more on our website at alsab.ca/seachange!

“Adam was one of my oldest and closest friends. His optimism and zest for life was completely infectious. The fact ALS can strike anyone – regardless of who they are, and there is no way to prolong their life once it does, is really scary. I know Adam would be absolutely amazed that his face is on a beer can, I don’t think he’d quite believe it. Through this partnership, we’re encouraging people to have #OneOnAdam and to help spread awareness of this awful disease.” - Kris Andreychuk

“When Kris came to us with the idea for this partnership, there was no hesitation. Adam was such a huge part of the Edmonton community, and touched so many lives, this is the least we could do. We crafted the Adam’s Pale Ale truly with Adam in mind. It’s super flavourful and approachable – just like him. We hope to make a difference in the search for a cure for ALS – every little bit counts.” - Pete Nguyen, Sea Change Brewery

“We were lucky enough to meet Adam in 2017, and in the short time we knew him, he certainly left his big heart in those he touched. His legacy continues to live on with the Adam’s Pale Ale fundraising campaign, and we are so appreciative of the support of Kris Andreychuk, and Pete Nguyen of Sea Change Brewing Co., and all of Adam’s family and friends for making this a reality. We hope “Adam’s Pale Ale” provides a reminder of how Adam lived life to the fullest, and helps make your day a memorable one. “ - Karen Caughey, ALS Society of Alberta Executive Director

Making It Possible Day 9 - Lori Huolt

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. Today 2 1/2 years later, I have now 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.

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 8 - Wayne Thomas

In 2015, in my early 40’s, while running with a friend, I noticed weakness in my left foot.  Over the next months and years after the weakness continued to progress and after several misdiagnoses, I was given the life-changing diagnosis in 2017 that I had Amyotrophic Lateral Sclerosis (aka ‘ALS’, Motor Neuron Disease or Lou Gehrig’s Disease).  

After the initial shock, me and my wife Joanna, have been proactive in fighting this illness and remaining strong.  Towards the end of 2017, we flew to Japan and spent five weeks receiving Radicava infusions and continued on with the treatment when I returned home for nearly two years. I also participated in a voluntary clinical study for Pimozide and also another for Reldesemtiv. While down in California, I also donated my blood for another clinical study so that the researchers could check for any biomarkers that may lead them to future findings for other ALS patients. Obviously, as are many ALS patients, I am interested in new research. Nurown and AMX-0035, for instance, have indicated initial interesting findings in their Phase 3 clinical studies.

With the support and prompting of several friends and colleagues, I have chosen to leave a legacy by writing a book to document my journey with ALS. I feel there is an opportunity to not only raise awareness of, and funds to fight, this horrible disease but also provide a bit of humor and hope for people to help them live their best lives as they face their own struggles in life. I knew going into this project, I would not be looking to make money, so at least 70% of the proceeds are going directly to the ALS Society of Alberta. The remaining 30% will simply cover publishing and printing costs. It is called: "PERSPECTIVES: 17 Things I Learned About Living Your Best Life While Battling a Terminal Illness" https://www.amazon.com/dp/0228845505

The ALS Society of Alberta has been fantastic to me and my wife. For every dollar that they raise, 60% goes directly to ALS patients and their families for much-needed equipment and the remaining 40% goes to the National ALS Society for research that is used to help find effective therapies and hopefully a cure that will benefit all ALS Fighters around the world. They have supported us with equipment as we needed it and in addition, all the people that work there have been an amazing emotional support to us as well.

In summary, 2020 was a difficult year for the world. As an ALS patient, we often feel isolated already due to our disability. When there is a global pandemic, many of us were trapped inside for over a year away from our friends and loved ones and many still are. After I was diagnosed my wife and I made the decision to purchase a second home in Palm Desert, California. We made that decision so that we could escape the snow, ice and cold that is a big part of Calgary's winters and with Covid-19 we were even more grateful. Last year in the fall, we flew down for the second year in a row and enjoyed warmer temperatures where I could get out and experience vitamin D. Our plan, assuming my health continues to hold up, would be for us to head down again later in this year and spend another few months in warmth (and sea level which helps my weakened breathing). This not only gives us something to look forward to, but also provides us a good mental health experience as we continue to make memories and live a life of gratitude.

Making It Possible Day 7 - Kari Evans

Walk With Kari to End ALS

The “Walk with Kari to end ALS” was created by the many friends and family of Kari

Evans in her memory. Kari was a one of a kind lady who was admired by everyone

around her. She was a wife to her husband Dale and mother to her two kids Shanelle

and Bryson, as well as a beloved friend by many.

In short, Kari was sunshine. She was never seen without a smile or a skip in her step.

She was known for her loud contagious laugh and her happy personality. She enjoyed

life and all the little things. A couple of her favourite things included going for a run and

having coffee on her deck in the sunshine.

Kari was diagnosed on August 12, 2019. Kari was a runner. She loved to run as it was

one of her favourite pastimes. She had noticed weakness in her leg that kept getting

worse. The diagnosis hit hard as she had just recently lost her mom to the same battle

just a couple months previous. She had just watched it all take place and then with her

own diagnosis, watched her world come crumbling down. This was the point in time

when we discovered that we are dealing with Familial ALS. This type runs in family

genes. First it was Kari’s Grandmother, then her mom and now her. As hard as it was for

her and for everyone around her discovering that diagnosis, she had hope. Shortly after

her diagnosis she was enrolled in a clinical trial that took place in Montreal. Kari

constantly looked for the positive side of every situation and kept her spirits as high as

possible. She was the person that helped the people around her look for the brighter

side to every situation and knew that everything happens for a reason. She loved all the

doctors, nurses and researchers that she came across, and they loved Kari. Travelling

to Montreal every couple weeks wasn't easy. It especially became hard when Covid hit

and travelling was limited. Soon enough Edmonton opened a clinic where she could get

her treatments. Eventually those trips got harder and Kari’s mobility became the limiting

factor for her to be able to travel to get the treatments. Kari passed away on November

14, 2020 with family and friends by her side.

Kari’s community is determined to not let her legacy die so this summer, with the help of

the ALS Society of ALberta, they have created the “Walk with Kari to End ALS”

fundraiser where we can raise money and awareness to help get one step closer to

finding a cure. It is also a way to carry on a tradition to help her keep fighting from

heaven and have a day we all come together to remember our amazing friend.

Making It Possible Day 5 - Jenna Doll

Jenna’s Story … continued part 6

What Life is Like Now.

Well, it has been a ride and I am thankful to everyone who has joined in on my journey! We have been tackling challenges and are taking it day by day causing me to be a “fly by the seat of my pants kinda gal.” The strength and mobility in my arms and legs have proven to be a challenge and I have perfected what I like to refer to as the “floor ballet” aka the odd fall here and there. I have began using a walker to help my balance and reduce the amount of “ballet performances”. I continue to take my radicava infusions and am hopeful for new medicine trails to start soon.

We are doing our best to look for the simple joys and take advantage of the good days.

Our family is grateful to the Alberta ALS Society and all the support they continue to provide us. They have had a positive impact on my quality of life, providing me with items that I use daily that give me independence. Most recently, the ALS Society has provided me with a scooter as part of their equipment loaner program. The scooter will give me the freedom to go for walks this summer with my family. I will be able to make memories and be present with them; for this I will forever be grateful. They have also connected me with my zoom coffee group that consists of others across the province who have been diagnosed with ALS. The group is a wealth of knowledge, advice, perspective and a safe place to share honest and open feelings.

I have recently been asked to participate in upcoming ALS Research Projects. The outcomes of these projects will hopefully provide further insight and steps towards finding a cure for ALS.

The ALS Society has been so good to me and I know my days would be so much more challenging with out their support. They have been such a blessing and I am so grateful to all the support they receive from people like you. I first handedly see the impact in your donations and I thank you for that from the bottom of my heart.

~Jenna

To read more on Jenna’s Story, check out:

https://www.alsab.ca/news/2021/3/1/salsa-presents-the-als-project-jennas-story

Making It Possible Day 6 - Purple Shirt Party

We continue to be inspired by the commitment and unwavering support within the Medicine Hat Community. This story shows the meaning of commitment as Megan Getz and Chad Watson truly made a difference in the ALS community this year in the fight against ALS.

In 2018, the first annual "Karen's Purple Shirt Party" in support of the ALS Society of Alberta was held. After losing wife and mother, Karen Wagenaar, to ALS in 2017, Rick and his four sons brought their family and friends together to pay tribute to Karen and her journey with ALS. The first Karen’s Purple Shirt Party was held on April 14, 2018 and raised almost $25,000. Since then, Rick and his family have remained committed to doing something special in honour of Karen, and continuing her legacy through their support of the ALS community. We are so honoured to be a part of the Wagenaar family's incredible legacy, and to continue sharing Karen's story with the community. We are so looking forward to everything that they accomplish as they pay tribute to Karen.

 This past year, the pandemic put a halt on all events across the province. However, this didn’t stop Megan Getz and Chad Watson from Medicine Hat High School from coming up with a creative way to host the Purple Shirt Party with the Wagenaar family. Talk about pivot, shift, creativity and sheer dedication. Their ingenuity shone through as they came up with the ALS Selfie Challenge.

 “This year because of COVID, we couldn’t have the basketball game and we were really upset about that, but we tried to think of a way that we could still do something, so we decided to do this selfie challenge. So, it’s kind of a substitute for the time being until we can have that big basketball game again,” said Megan Getz, an organizer of the selfie challenge and phys-ed teacher at Hat High.

 Medicine Hat High School’s basketball teams weren’t able to wear purple on the court to support Karen’s Purple Shirt Party this year, but the school challenged staff and students at all junior high and high schools in the division to take selfies using an ALS Society filter and post on social media, to raise awareness for the ALS community in Alberta.  The selfie challenge was a huge hit across the province. There were at least 9 schools that participated and many members of the ALS community. Our own superstars, Mikael and Frida Backlund from the Calgary Flames did the selfie, donated and challenged other hockey players. Mikael had the opportunity to host Karen, Rick and their four sons at a Flames Game, so this challenge was especially meaningful.

 Thank you to Megan and Chad for your commitment and dedication to the Wagenaar family and the ALS cause. You truly make a difference.

Making It Possible Day 4 - Dennis Rommell

Hello my name is Dennis Rommel.  I was diagnosed with ALS in December of 2020.  I had been experiencing symptoms for 3-4 years.  My mobility became quite challenged in 2018 that I had to go onto long term disability before I retired in the fall of 2019. After a fall at home and a 3 week stay at the Royal Alex Hospital in November 2020, I was originally thought to have PLS (Primary Lateral Sclerosis).   Many tests occurred during my stay at the hospital (CT scan, MRI, blood work and nerve conduction tests at the Glenrose).  When I left the hospital, I had to become used to using a wheel chair for my mobility.  I had my first appointment at ALS clinic at the Kaye clinic on December 1, 2020.  During that appointment, my diagnosed was changed to ALS.  Came as a shock at first hearing the words, I'm now dealing with a different deck of cards. December 1st is also my Wedding Anniversary to my wife Lorna of 41 years.  It was an emotional day for sure. 

First and foremost, accepting the diagnosis and the why me situation. The team at ALS clinic are great, very thankful for their wonderful patient/doctor support.

Accepting what I've been dealt and appreciating every day.  Things I first gave up was driving, my wife is now my designated driver. 

Things we love to do, is taking holidays in Mexico, our last trip was to celebrate our 40th wedding anniversary in Puerto Vallarta.

We are hoping to travel to Nipawin, Saskatchewan this summer if COVID restrictions allow.  Nipawin is where my wife and I were born, we moved to Edmonton in 1985.  We are going to visit with family and friends.  Also, we have a trip planned to Jasper, AB in September for my Birthday. 

My main support system is my family, they have been great on daily basis always available to talk and just listen. The ALS Society have given me a ton of support.  Helping with required needs for more independence and mobility.  I am so thankful for all the support they continue to provide for me. Also surely appreciate the Coffee Group zoom meeting twice a month, it is great to connect with others that know what I am going through.  We have a few good laughs & also tears, it is helpful sharing those emotions with other patients.

PLANS FOR THE FUTURE; just living each day to the best of my ability. Travelling this summer and spending time with family and friends. Looking forward to the Walk for ALS with family and a few friends. (of course socially distanced and safe)

Making It Possible Day 3 - Todd Bertamini

Making it possible.

My name is Todd Bertamini, and I am 50 years old.  My journey started in early 2017 when I was having issues doing calf raises and standing on my tippy toes, specifically my left foot.  I began to talk with my family Doctor and had the first of many EMG’s and an MRI.  But my focus on my left foot had to be halted as I ended up breaking my right ankle when out fencing and stepped into a badger hole (still to this day blame it on my left foot weakness). A few months to take care of the broken ankle and late 2017 started again with EMG’s and Doctor visits.  Within theses visits I discussed that ALS is in my family; so, a genetic test was performed, and it was confirmed early 2018 that I had Familial ALS (SOD1).

Since then, Rob and everyone else at the ALS Society of Alberta and the ALS Calgary Clinic have been of great assistance on my journey.  I have been in several research trials and am currently enrolled in the Biogen trial targeted at SOD1 gene.  I am a firm believer in participation of any trial I am able to join, as it provides a future for ALS patients and finding a cure. 

I was recently selected as a Community Fellow in a pilot program and enjoyed a few days attending a highly informative and inspirational ALS Canada Research Forum.  Along with the Research Forum I have joined with a few others and ALS Canada to have input on the start up of a Canadian Learning Institute.  With both programs I continue to advocate for ALS care and research and keep a positive outlook for change.

Prior to diagnosis I was highly active; playing hockey, baseball, golf, hiking or rodeo with my kids.  I still enjoy a few of those but slowly eliminating some as my capabilities diminish.  I live North of Calgary on an acreage with my wonderful wife and two amazing kids that push me everyday to enjoy it all.  Not everyday is great, some days I just have to sit on the sidelines and watch but glad to be able to appreciate every moment.  Each day I keep positive and have my family and friends drive me to be the best I can be and continue to advocate to a world without ALS.

Making it Possible - Mary Shannon Will

Day 2 of Making it Possible features Mary Shannon Will, an artist based in Calgary and Alburquerque that was diagnosed with ALS three years ago. With an artistic spirit, Mary decided to provide photos of her life, which comprise this video photo essay. Please take a moment to watch her story, and get to know Mary a bit better.

Making It Possible - Louis Sousa

We started noticing Louis’ slurred speech November/December of 2019. We made a doctor's appointment with our family doctor and we went to see him on January 2nd. He kind of thought it was a mild stroke that he had in his sleep, so then he was sending us for all those tests (MRI, CT scan). Then we were told that the MRI wouldn’t happen until January 20, 2021, a year later. So I asked the people who do the MRIs, what if we pay? They said well you can get it done within a week, but you need a special requisition. So then I phoned the doctor again and he said come on in. So he got us in to see the heart and stroke doctor at the U of A and that’s where they did the MRI and CT scan so we didn’t need to pay…we’d been going through this process all of 2020 and if we would have just gotten that MRI in January 2021, a year would have been lost with our medical system. From the heart and stroke, that’s when the doctor said he sees everything normal with those results. We were referred to the Kaye Clinic, to the neurologist group.

 Louis said he started noticing his speech in October 2019, but us, we didn’t notice it until basically late November/December 2019. And he always had twitching, but you don’t hear much about ALS so you think it’s probably just tired muscles, like everybody twitches once in a while right? Then the slurred speech happened and then he was losing a lot of weight. Louis also has Crohn’s Disease and we had seen his doctor for that and he said for him to be on a special diet with lactose-free and gluten-free foods, so we thought that was why he was losing weight, but it was because of ALS… he was tired all the time and he was on the CPAP machine and now he’s moved on to the Bipap and that’s helping him a lot better for sleeping.

 It’s changed his life cause he can’t speak, and that’s been tough. He had to go into long term disability September after working with the same company for 40 years. He worked in asphalt, so he was on the street where he had to stand all day, like for 12 hours a day, and he’d come home with hip pains, back pains. So he had to stop. And we’ve always had values, like live everyday as you can and enjoy it, but you know you’ve got that (ALS) now sitting at the back of your head… but we’ve always had the same values. We see more family, we FaceTime them more, more people check in now. But otherwise, we’ve always been family orientated and his friends still keep in touch, but it’s hard when he can’t speak. But FaceTime is the way to go because I can be there, and I can help with Louis’ speech, so that’s what we’ve been challenged with.

Louis has an ALS iPad and he can do the sentences, but he really doesn’t like technology, never has. And even when he was working, he had an iPhone, but he would always speak to text. So it’s been very difficult that way. And his speech has gotten much worse, like a lot of us have a hard time understanding. So we tell him to just give us the one word and he still can’t get it, so he writes it down on the iPad. And his swallowing, he told me the other day that it took him 45 mins to eat a waffle. He also does the tucking to drink his liquids and we thicken a lot of things. And for a lot of foods he did like, he doesn’t want to eat cause it seems as if they have no taste or it takes him forever to chew. He bites his cheek a lot. And we belong to the ALS Society, so I do the coffee/caregivers groups and he’s done the coffee groups and you don’t see many with Bulbar ALS. And a lot of them you’d never know (they had ALS), the ones that we have met through the Society. I think there’s one other person that has Bulbar ALS, but otherwise most of them, they all speak but most of them I think it’s their limbs that have been impacted. Also his hands aren’t as strong as they used to be, but other than that, he is still able to walk. And I always make him a list of things to do throughout the day, so he does keep busy. And my daughter, she lives at home, my oldest, and she helps a lot with Louis, so that’s kind of a blessing since he’s not home by himself. But I’ve moved my job and I’m now only 5 mins away. But we’ve had a great team!

The ALS team? Remarkable, not a negative thing to say. Our appointments are very long when you go there. You go every 3 months and you’re there for 3-4 hours. You see the nurse, the social worker, the speech therapist, the dietician, the psychiatrist, the respiratory therapist and then the last person we see is the neurologist. You can email/phone them and within a day you’ve got a response back. And even the ALS Society, like Deb and Christie, thank heavens for them. Like the equipment we’ve received for Louis, and they are just so supportive. But you know, a lot isn’t said about ALS…like people don’t understand what it really is. And you never hear about it, which is very sad. Some of it is discouraging, but the team is remarkable, we have nothing negative to say. We’ve been blessed with them. With a recent ALS diagnosis, have a great support system and keep a journal of when things happen so that when you have to talk with the doctors, you can keep track of when you notice things. When I go to appointments, my binder comes with me and I write everything down. And one wonderful thing is, they allowed us, the first time we went to meet the ALS team, to record the meeting and my daughters were on speaker, so that’s a very good thing/idea… it was remarkable for them to allow us to do that. Reach out to people and enjoy as much as you can.

GivingTuesday's Making it Possible - Pete Truch

An ALS Experience – One Person’s/Family’s Story

By Pete Truch

The original diagnosis was a severe leaky heart valve, and it only went downhill from there. Add on only a sixty percent functioning lung capacity and then the pièce-de-résistance ALS, a terminal disease. When the good Dr. told me this news, my reply: “Doc, I find this very hard to believe, ‘cause I’ve never played professional baseball.”

At this point (August 2019), an incredible meeting of new people in my life took place, beginning with the fantastic respirologists who have breathed in new life for me; the neurologists who have given me a “slow-it-down pill” (Riluzole) – with our somewhat crippled health care the costs of which I have to pay myself (but I’m not complaining); all the staff and associated organizations at the South Health Campus in Calgary; and finally,the hard working team at the ALS Society of Alberta. From the latter group, Michelle Savard drew the short straw and ended up with me on her client list.

Given the short end of the diagnosis as “months”, we first had a family reunion, a living wake we called “Celebrate Life”. Attendance was so good, it required renting a hall and catering the meal, stocking the bar, and trying to accommodate all the “out-of-towners”. Perhaps the threat of “I’ll likely have to come back and haunt you if you don’t show”, had something to do with the super turnout…

Since my mobility was still reasonable, my dear wife (Doreen) of 48 years and I travelled to Orlando, where we met our son Peter and his two sons, Kai and Sasha. Between wheelchairs, a walker, and electric scooters, we spent all our energy over the next 10 days, riding the rides in the “happiest place on earth”. Sasha, 4 years old at the time, summed it up best when asked by a stewardess in Toronto what he thought of the trip - “Best vacation ever!!”

Enter once again incredible people – the Backlunds (Mikael and Frida). Frida had taken care of her Mom, Ann, through the duration of her ALS illness in their native Sweden. In Ann’s memory, through the Alberta ALS Society, Frida and Mikael have helped more than 80 families by providing game tickets, t-shirts and jerseys, all personally autographed by Mikael. After telling Mikael we would be at the game in Las Vegas in a couple of weeks, he rewarded us there with a game puck and an absolute priceless smile. Thanks again Mikael!

When I had mentioned the great walking distances in Vegas to Michelle, she asked if I could use a walker. Bang, the next day it was delivered! It was so handy in Vegas and has proven itself useful ever since. We continued our travels over the next few months in a back-and-forth between Calgary and Kelowna, until Covid-19 hit. A special thank you to our granddaughter, Danielle, who has looked after our Calgary house for us in our absence. That’s a lot of plants to water! We were in Kelowna when the shutdowns started and have spent the bulk of our time there since. The number of cases in this locale is very low.

Covid-19 created an opportunity for me that, due to travel, was not open to me before. I was able to attend my first support group session online. It was here that I was able to meet both Leslie and Rob, and have the occasional meeting with Michelle. The diversity of participants gave me a new perspective on this disease, coupled with the determination and resilience of those I’ve met.

Take Mike, for example, who is in his 13th year since his diagnosis. Mike spends his time inventing new help tools such as aids to putting on socks, shirts, taking showers, all without the use of your arms and hands which Mike no longer has use of. Incredible!

Then there’s Patricia, who celebrated her 50th wedding anniversary and still goes camping despite very limited mobility. There’s Peter, who is able to still take walks with his caregiver wife, but this is now a changing situation. There are many more people whom I’ve met once or twice online since we’ve all become the ultimate conZoomers.

Every day for me is a Giving Day. I give thanks that I wake up, thanks to my wonderful wife who has really been my caregiver since the day we were married; thanks for all my family and friends and thanks to all of the people who have helped me in this new journey.

Please help in this fundraising drive for the ALS Society of Alberta, which gives out so much of itself.

Thank you.

GivingTuesday's Making it Possible - The Keenan Family

As part of our GivingTuesday campaign this year, we wanted to tell the stories of some of our families, and what the ALS Society of Alberta has meant to them as they have faced and lived with an ALS diagnosis. Here is the Keenan Family’s Story:

 When Chad Keenan started getting winded walking up the steep Saddledome steps to regular Flames game seats in 2017, he chalked it up to just getting older. Nothing to really worry about. But that was followed by other changes – a new clumsiness that was leading to falls, including one that resulted in a broken ankle. Little things on their own, but Chad and Pam knew that something wasn’t right. After delays and wait lists, an MRI finally identified ALS as a potential diagnosis and an appointment with a neurologist was quickly in place.  One week after seeing that neurologist, Chad met with Dr. Korngut at the Calgary ALS Clinic and his diagnosis was confirmed. At 42 years old, with two young daughters, Chad had ALS.

Like most people, Chad and Pam had no personal experience with ALS up to this point, and it was a difficult diagnosis to process. Chad and Pam were both faced with what so many of us feel when diagnosed – what is this disease? What does this mean for our lives and futures? The Clinic put them in touch with the ALS Society of Alberta, and with this team in place, the Keenans started to plan for the future and find a way to move forward.

Pam describes the assistance of the ALS Society of Alberta and the difference it made to them in terms of flipping a switch – there was their mindset before, and their mindset after the Society became part of their lives. The Society is what helped navigate the day to day, managing real-life scenarios such as how to properly set up the home and how to safely take vacations. Chad wanted to focus on how to make the most out of every single day – while he couldn’t control how ALS was progressing, he could control how he reacted, and how he spent his time. Life with ALS was about making things possible, instead of accepting the limitations.

Leslie Ring-Adams was the Keenans’ Client Support Coordinator, and from the get-go made them realize that what they thought might be impossible was actually possible, starting with a trip to Vegas with Chad’s closest friend Kyle to watch an NHL playoff game between the Winnipeg Jets and Las Vegas Knights. When Chad initially questioned the viability of the trip, feeling he wouldn’t be able to enjoy it with his physical limitations, Leslie stepped in “with a timely entrance of a movie action hero” (Chad’s words), offering a motorized scooter. And this was what the ALS Society of Alberta brought to the Keenan family – they were a cheerleader saying “you can do this!”, whether that was a trip to Las Vegas or having the equipment to safely have a shower. Chad and his family and friends could continue to live their lives, even if it meant figuring out an alternate way to make that happen. As Pam says, the ALS Society helped them navigate the day-to-day, and was always a step ahead of his needs.

Pam, Chad and their daughters took a number of vacations together during his illness and travelled to Palm Springs to celebrate their 21st wedding anniversary and New Year’s Eve just a month prior to his passing. Pam describes their ALS journey as giving them a new perspective on life, where every moment feels precious.  There is very little about ALS that is in a family’s control, other than how they respond. And with that in mind, the Keenans lived their lives to the fullest in the face of such adversity.As Pam says, “It was about finding the joy in life. Even in the most challenging situations, there is always something to be grateful for.”

When asked about the tangible ways in which the ALS Society of Alberta supported them during Chad’s illness, Pam is quick to mention the support groups for both patients and caregivers. The opportunity to make connections with people who understand what you are going through was imperative to keeping a positive attitude. The support of those groups led to life-long friendships. The equipment loan program was key to their lives during Chad’s illness as well, always helping them stay a step ahead by knowing what they would need before they even knew themselves.

Pam supports the GivingTuesday campaign for the ALS Society of Alberta, and in addition to her family’s story, shares this request for your support as well. “The ALS Society of Alberta was instrumental in helping make our lives easier through equipment loans, ideas on managing issues, and access to support groups. They, along with other charities, have been impacted by COVID as most of their fundraising was event-driven. If you are considering charities to support going forward, I would vouch for the real and tangible ways they use their money to support families dealing with ALS across the province.”

Chad Keenan passed away on January 27, 2020, leaving behind his wife Pam, daughters Tianna and Ainsley, his parents, sister and brother-in-law, parents-in-law, and a large and loving extended family.

Making it Possible - Lori's Lovebugs

Day 29 of Making It Possible – Lori’s Lovebugs

Today we’re going to feature a pretty amazing group that you may have heard of, Lori’s Lovebugs. Lori’s Lovebugs come from beautiful Camrose, Alberta and each year they walk as a team for their dear friend, mother, co-worker, Lori. Lori's story was featured on their Walk To End ALS fundraising page.

Here is Lori's story…" in the summer of 2018 I began experiencing slurred speech and weakness in my right hand. I was sent to see a specialist in Edmonton and on March 14th, 2019 I received the news that I was diagnosed with ALS.
This news was devastating but by the strength of my family and friends, I was able to find the strength and determination to fight this disease.
I want my message to people to be “Be strong, be positive, and never give up.”
I am losing my speech and the use of my hands but I continue to live a full and productive life surrounded by my husband, kids, grandkids, family, and friends.
As I continue with my journey I am surrounded by my family and friends who are on this path with me.
As most of you know there is no cure or and little treatment for this disease. It is underfunded and we ask for your donation in hopes of one day finding a treatment or cure."

We couldn’t help but want to share this amazing team’s story after seeing their commitment to the cause this year raising over $20,000 dollars for the Walk To End ALS.

Making it Possible - Cheryl Ward and Kylie Cooper

The following provides a view of ALS through the eyes of a child who has experienced the loss of a loved one. Cheryl Ward was diagnosed with ALS in March 2016 and sadly we lost her in October 2019. Cheryl was very proud of her Nephews and their families, and her Great Niece Kylie Cooper gave the following speech in February for her 4H Public Speaking presentation. Kylie is 11 years old and is a Junior in 4H. She chose the topic, then did all of the research herself and presented live to an audience of approximately 50 people. She won for her age level and was able to move on to District Level for presentation. Thank you, Kylie for providing such a wonderful tribute to your Great Aunt, while educating people about ALS.

Just One Wish

Close your eyes, go on! Now imagine yourself sitting in a doctor’s office and they tell you that you have been diagnosed with Amyotrophic lateral sclerosis. Open your eyes.

Good morning/afternoon madam chairperson, honorable judges, ladies and gentlemen, guests and fellow 4H members. Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrigs, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow and eventually breath.

Our brain is connected to our muscles through millions of specialized nerve cells, called Motor Neurons. Motor Neurons act as our bodies “internal wiring” and allow us to move our bodies as we choose. The brain will send a signal along the motor neurons telling the muscle to move. This signal is an electrical impulse created by chemicals in our neurons. Which is what a person living with ALS loses the ability to do.

Unfortunately, my family is familiar with the disease as my Great Aunt Cheryl was one of the estimated 3,000 Canadians living with ALS. My Auntie Cheryl was diagnosed in March 2016, at the age of 65. 80% of the care is shouldered by family members, and the other 20% by the ALS Society of Alberta. People living with ALS require costly equipment to help them try to function as normal for as long as possible, which most of the equipment is provided by the ALS Society, relieving a bit of the burden off the family.

ALS is a drain on the caregivers physically, emotionally, and financially. In the beginning, our family was able to care for Auntie Cheryl, but her body deteriorated quickly ending with having to hire homecare. The sensory neurons in people living with ALS continue to function normally, meaning they continue to feel the sensations of hot, cold, discomfort, pain etc. The mind also often remains completely alert and lucid, a person living with ALS has a lively, unimpaired mind, but is trapped in a paralyzed body.

This was probably the hardest part for me, trying to have a conversation with her but not being able to understand what she was trying to say, as the muscles in her face, lips and tongue no longer worked. She did end up getting a voice box, where she was able to type what she wanted to say, and it would speak for her. Eventually she was unable to use it due to the loss of the muscles in her arms and fingers. It made me sad to see her lay in her bed unable to move or communicate, but still have the mind to want to be able to do things.

80% of ALS patients pass away within 2-5 years since diagnosis, although 10% have been known to live 10 years or longer. I am sad to say that Auntie Cheryl was among that 80%, as she passed away in hospital on October 13th, 2019. She fought hard to stay in her home for most of her illness, but in the end, it was just not medically possible.

My one wish would be that Amyotrophic lateral sclerosis would be words that no one had to hear.

Making it Possible - Eleonore Grafe

My mom Eleonore’s core motivating force was LOVE- and it was her love that has had a profound impact on the people and friends she met on her journey through life. She taught all of us to be caring, affectionate, forgiving, and empathetic towards others, especially those in need. Her persistent efforts to meet the needs of her family and friends was endless.

In November 2014, mom developed a left foot drop. It continued to the point of getting a brace for her left leg, and then she began having pain in her arms, fingers, and toes. We started her eventual diagnosis of ALS in 2015, meeting with Dr. Sudharsian, Neurologist, on an annual basis. Despite these appointments, mom continued caring for my dad at their home, driving her car and attending her many functions, which included volunteering at our local Dinner Theatre and attending her Liberal meetings.

2017 sent her a huge curve ball in life, as my dad ended up in an extended care hospital and it was time to clean out their home of 56 years and put up the For Sale sign. Mom was having difficulty walking and began using a walker, and moved into an assisted living apartment at Points West Living. There she met many people she knew as my mother knew everyone in Red Deer, and those that just met her loved her. She even participated in their radio/ newspaper advertising, and everyone recognized her voice on the radio. She was always busy participating in the events at PWL and continued her beloved Dinner Theatre.

2018 was the time she met a lovely man Rob, from the ALS Society, and she just raved about how pleasant he was. Rob introduced us to the ALS Clinic at the University of Alberta, and she and I made the trek to meet the ALS team. It was a very positive appointment and the team made every effort to accommodate Mom’s future needs. As her ALS progressed mom received her electric wheelchair through Rob at the ALS Society, and she was so happy to be independent with this chair. Every morning mom would be up dressed in matching outfit and have her make up on.

I know she struggled daily but she had a force for spreading good in the world and her legacy - this compelling force of good touched many lives. She lit up a room wherever she went with her beautiful smile and laugh. Sadly for all of us who loved her, mom passed away in her sleep, December 18, 2019; however, she is lighting our paths as we are walking, and this beautiful wonderful woman, has taught us to love and respect each other and most of all to never ever give up!

Making it Possible - Awesome Lemonade Stand

Making It Possible Day 26 – The Awesome Lemonade Stand

Over the past month, you have seen us post a few times about the little Lemonade Stand that could: The Awesome Lemonade Stand.

What started out as a small project for the Andreychuk family to honor their late friend Adam Rombough, ended up taking on a whole new life once Covid-19 changed the world we live in. Like many other events in Edmonton and around the world, they were going to take their Lemonade virtual!

The Andreychuk’s (Katherine, Kris, Claire, Adam & Elizabeth) didn’t let a pandemic stop them from raising awareness for ALS. This family spent hours baking (thanks to Baba!) the yummiest treats, brewing the tastiest lemonade, and packing them up in the most beautiful packaging you could imagine. But their work wasn’t done there, they made home deliveries to each person who requested a goodie bag.

Claire, Adam, Elizabeth, and Fam doubled their goal by bringing in more than $5000.00 for the Walk To End ALS in Edmonton. If that isn’t making it possible, we don’t know what is.

Making it Possible - Margaret (Peggy) Stairs

Peggy loved her friends, loved to socialize and have a fun time, all with a sparkle that no one could resist. She was always classy, impeccably dressed and had a lovely disposition. She truly left her mark with every person she touched.

In 2006, Peggy was diagnosed with Primary Lateral Sclerosis. She faithfully attended the PLS support group in Calgary and considered the members as close friends, deeply appreciating their support, and giving support, through this difficult journey. She loved attending the group and valued the connection she had with each member. And not surprising, the group loved Peggy.

Peggy was born in Toronto and moved to Calgary as an adult, and it remained her home until her final 5 years in Victoria. The challenges Peggy faced as a child growing up prepared her to face life's challenges and to not just persevere but to triumph. She resolved to make the best of a situation and to seize the opportunities that presented themselves.

Peggy had her yellow belt in Judo, a pilot license for gliding, was intimately involved with the Canada Cup Sailing Challenge, and would have LOVED to had the chance to travel in space! She worked as an Executive Secretary for many years, a Realtor and owned All-Type Secretarial Services. When she was no longer able to work due to PLS she spent her winters in Puerto Vallarta. She loved the heat and had wonderful friendships in the ex-pat community.... some of her best memories!

She kept her dear friends close, one of those friends being Jean. For 31 years, Jean and Peggy had a very special mother-daughter type bond. They traveled together to Japan, Thailand, India & Nepal with wild and wonderful adventures that Peggy enjoyed reminiscing about.

As PLS started to take away Peggy’s independence, she didn’t allow it to take away her spirit. Peggy passed away on her birthday, March 5, 2019, with Jean by her side after celebrating her full life with champagne and her favorite chocolate cake. Peggy left a legacy to ensure we continue to “make life better” for our families.

Making it Possible - Peter Benders

It has been five years since Dr. Karla at the University of Alberta diagnosed me with ALS. Not knowing how bad this disease actually is and with the little knowledge I had about the disease, the first time I met with the ALS team at the UofA Kaye Edmonton Clinic, I was asked questions like can you still eat, breath, talk and look after yourself - then I knew what I was facing.

I’ve always had a love for motorcycles and the outdoors, which gave me the opportunity to see this beautiful country from the seat of a motorcycle and from the top of a mountain. Fortunately for me the progression of my ALS journey has been relatively slow. However, as a result of this disease I’ve had to step back and/or give up on being able to do the things that I love which has had a significant impact on my life.

With all of this in mind I would like to give a special thanks to the all of the people and support systems in my life who have had a significant impact on my journey with ALS, and continue to inspire me to be thankful for the life I have lived and to make the best of each day I have left. This includes: the ALS Society of Alberta; the ALS team at the UofA Kaye Edmonton Clinic and South Health Clinic; Edson, Cochrane, and Rockyview Homecare; and the support of Mikael Backlund with the Calgary Flames who made it possible for me and my family to go the Flames / LA game. Most importantly, I am thankful for the love of all my friends and family.