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.

50/50 Draw is Live!

We have had lots of people inquire, and we finally have it ready to go! The ALS Society of Alberta’s 50/50 raffle will take place on June 13th, in honour of Betty’s Run for ALS and the Walks to End ALS. Funds raised will go towards client service and equipment for our amazing families living with ALS in Alberta.

We need your support - please share this link with all of your family and friends! Minimum prize will be $4000, with a maximum prize of $10,000 if we sell out.

Thank you!

April 2021 Newsletter - Prairie to Peak

Please check out our April 2021 Newsletter for news and upcoming events!

Karen's Purple Shirt Party - ALS Selfie Challenge!

Karen’s Purple Shirt Party was started by Rick Wagenaar and his four sons in memory of their wife and mother, Karen Wagenaar, who they lost to ALS in 2017. Since 2018, they have dedicated their time and energy into annual fundraisers, sharing Karen’s story while raising awareness and funds for the ALS Society of Alberta. We have been so moved by their support, and the support of the entire city of Medicine Hat, as they continue to make Karen’s Purple Shirt Party a reality even in the midst of the COVID-19 pandemic. They have come up with a unique, viral campaign that we hope you will all take part in!

Traditionally, Medicine Hat High School's basketball programs dedicate one home game each year in support of Karen’s Purple Shirt Party. This has turned into a large event over the last two years, raising $3,007.05 last year and $1,190.00 the year prior. Due to COVID-19, they were forced to move in a different direction to raise awareness for those impacted by ALS. Thus, the ALS Selfie Challenge, 2021 was born!

There are two ways to participate in this event:

1. Just the selfie (more details below)

   • Take a selfie using the “ALS Selfie” filter searchable on Instagram stories. Tag 3 friends challenging them to do the same and tag @ALSAlberta, and post on Instagram and Facebook.

2. Selfie & donation

   • Follow the above steps adding that you donated and are challenging your 3 people to as well.

This challenge is simple – there is a new ALS Selfie filter on Instagram. To take part in the challenge, we want to see your photos with this filter in place! The challenge will run from April 26-April 30, where you post your selfies online and donate if you are able, while challenging three friends to do the same. To donate to this campaign, just click here!  

The Purple Shirt Party and Medicine Hat High School have provided some great additional information for you to reference, and they challenge other schools around Alberta to participate as well. Everything you or your school will need (posters etc.) to participate is in this link.

We promise, even some of us tech-unsavvy folk at the Society could follow their instructional video and get our selfies taken!!! How to take a selfie with the ALS Society filter -  https://drive.google.com/drive/folders/1isEd6-iJ9PsYH7fZ7bNka3z3bazIaBcu

We look forward to seeing all of your beautiful faces the week of April 26!

The 2021 Edmonton Walk To End ALS Ambassador - Belle DeZutter

I am honoured and humbled to be chosen as the ambassador for “The Walk To End ALS 2021” and to be able to share my ALS journey, with all of you.

My journey began in July of 2017, that’s when I realized that after many frequent falls, weakness in both my arms and legs that it was time to see my doctor. After all the testing that is required for a diagnosis of ALS, the day had finally come, on March 9th, 2018.  I was relieved to finally get the diagnosis of ALS, a diagnosis that I had known in the back of my mind all along.

You see, I have Familial ALS. Familial ALS happens through inheritance, it occurs in 5 to 10% of ALS patients. I have had two brothers pass away and now my niece has also been diagnosed. When I received my diagnosis, I was flooded with the feeling of sadness and urgency to fulfill things I had been putting off. It was now, that with clarity, I knew what my body needed and what my heart wanted.

Well now I was ready to start this new chapter in my life, I was determined to live my remaining years filled with positivity and resilience.

My first step was reaching out for help from the ALS Society of Alberta. They made me feel special and gave me confidence that I didn’t need to worry about any challenges there were in front of me because they would be there. They were just a phone call away from assisting me in my needs. As this disease progresses and as the loss of my mobility continues, there becomes more of a need for special equipment and the Society promptly delivers these items to my home.

 Our coffee group meetings once a month are a great way to let our hair down and to meet other people with ALS. We often just talk about what is new in our lives, we talk about new therapies, upcoming clinical trials, family, and coping with hardships that we were experiencing. The best thing about the group is we are comfortable together. We are comfortable enough to feel and express our sadness and to cry and to tell a joke or two (there’s always lots of laughter). Now that COVID-19 is here we have had to go on ZOOM for our meetings and it’s been a different experience for all of us to navigate with our computers. But we’re all ALS soldiers and as soldiers do, we adapt to circumstances that are put in front of us.

The ALS Clinic has also been outstanding with the medical team being so helpful and supportive as we are navigating through this new change in our lives. I am so blessed with the positive attitudes of all these special people that fill my heart with acceptance and resilience. It’s also a reminder of the necessity to provide support and services for those battling ALS.

This year let’s all get out there virtually and raise awareness as we Walk To End ALS! As a village, we can do this and not one more person will hear those terrifying words “ALS”.

 Let’s forever have HOPE (Heart Open Please Enter) that there will be a day where we can enter into a world without ALS. And as these pictures show, someday we all can throw that cane away.

Happiness is a journey, not a destination

The 2021 Betty's Run for ALS Ambassador - Pete Truch

I am honoured to be the Ambassador for the 2021 Betty’s Run for ALS, especially as it is the 25th anniversary. As the Ambassador, I want to be the voice for those that can’t speak, those that can’t leave their homes, and those that are struggling much worse than I am. I want to represent and speak for all of us in Alberta living with ALS that I have had the pleasure of meeting over the past year and a half.

When I reflect on my diagnosis, and how I have managed to deal with it in a positive mindset, I think back to when I was just 14 years old. I had a pack of matches with a saying written on it: ‘It doesn’t matter how long you live, but how’, and I have tried to live my life by that motto ever since. Finding the bright side of life is generally what I try to do – even when diagnosed with ALS in August of 2019, I made the doctor laugh by saying, “Doc, I find that hard to believe since I never played professional baseball.”

My diagnosis came in a roundabout way, after medical appointments that were intended to investigate a severe leaky heart valve. The astute doctor noticed a twitching in my arm, which led to a referral and the diagnosis of ALS in August of 2019. Looking at a potential diagnosis of months to live, my wife of 49 years Doreen and I lived life to the fullest – a family reunion, a trip to Orlando, and a trip to Vegas among other events.

The ALS Society of Alberta, and Michelle Savard in particular came into our lives then, offering support, mobility equipment required for travel, and advice on how to move forward. Then COVID-19 hit, and while our travel plans were curtailed, I was given the chance to participate in the ALS Society’s virtual support groups. Through these, I have met so many people that I am representing as ambassador – people with different backgrounds, and at different stages of the disease. Meeting these people and becoming friends with them online has given me a new perspective, and I am in awe of the determination and strength of all these Albertans. 

As this year’s ambassador, I am passionate about educating society about how devastating this disease is, telling not only my story, but those of the 300+ Albertans currently living with it. About the incredible support we receive from the Society, and how imperative the funding of that is to us living with ALS. About the expense of equipment for day-to-day mobility and communications that we would have to cover personally for if not for the ALS Society providing it free of charge. And so importantly,  about the rapid degeneration that occurs physically with ALS, and how we are desperate for research funding to find a cure.

Doreen and I have travelled the world, visited 68 countries, and have lived our lives trying to continuously learn new things and take on new challenges. ALS is certainly the biggest one I have faced, but I am focused on facing it with humour and positivity. I have never complained about all of the wonderful things that have happened to me, so I refuse to complain now about the bad. I thank you for your support of Betty’s Run in 2021 – it is needed so much for myself, and all those I am speaking on behalf of this year. 

ALS Society of Alberta's March E-Newsletter

We have started a new version of our newsletter, to be Emailed and posted every month online. Please have a look here, and let us know if there are any stories/topics that you would like covered in the future.

March E-Newsletter: Prairie to Peak

SALSA presents THE ALS PROJECT: Jenna's Story

One of our AMAZING clients, Jenna, took the time to chat with SALSA (Student ALS Association at the U of A).

Jenna explains her ALS journey thus far in this open, honest, and beautifully written interview.

We hope this story inspires you as much as it has inspired us. Jenna, you are an absolute light amongst us!

“I got diagnosed (with ALS) rather really quickly due to COVID-19. What had initially started me to go down this path was after Ramsey was born (son), he’s a December baby! I had two very difficult pregnancies so I feel like a lot of the ALS symptoms were hidden with being pregnant. In January (2020), I really started to notice the mobility in my hands. I call it t-rex hands, it’s just like the muscles cramp. And I had been experiencing that for years and I just assumed that it was a muscle cramp that never lasted for very long. But then after Ramsey was born, I really noticed my legs were quite weak and I kind of chalked it up to being on bed rest—and then the pseudobulbar effect, the emotions were really all over the map. You know you talk about that postpartum just cause you could cry and you could laugh and go back and forth within 60 seconds. It was a whole whirlwind of emotions.

So in early June, end of May, I really noticed my legs and my arms were quite weak and I couldn’t chalk it up to being postpartum anymore, so I made a call and went to see my local doctor. We talked about what I thought it was. I assumed it was AMS and so I explained my symptoms of weak hands/legs and my shoulder constantly felt like there was a pinched nerve. So I went to the doctor and explained it to her and she referred me to a neurologist in Edmonton at the Glenrose Hospital. And because of the symptoms that I had explained, they wanted to see me in-clinic immediately. So I went to my family doctor on a Thursday and by Tuesday of the next week, I was in the Glenrose starting testing. I had an EMG (muscle test to examine muscle response) right off the hop—and the testing wasn’t going well—and when it was all said and done, the doctor said that it was very serious and he wanted to admit me to either the Grey Nuns Hospital or the University Hospital that day.”

“My dad drove me up to the city and because of COVID, I couldn’t have a family member with me. So he dropped me off at the emergency doors at 7 AM, went in and I said I was there to see the doctor—they pulled up my chart, took a read, and called in the neurology team. I was in the emergency room for the day. They (neurology) started off with the process of elimination. They do blood draws and test you for everything they could possibly think of. Because I was in-house, I was able to get a CT and an MRI that day. By 8 o’clock that night, I was moved into the neurology unit at the University—I then had swallowing and physio assessment. Then on the Friday of that week, the doctor had called another team of neurologists to do a second opinion. So with them, they came in, did the EMG testing again—and they stepped out the room to talk about it. This was close to lunch. They came back at about 12:30 and they had decided that they had ruled out everything else that it could possibly be and I was diagnosed with ALS.

I was by myself in the city. I called my family because they wouldn’t release me until they spoke to my husband. So I called all my people, got my kids sorted out. My dad and my husband came up, spoke to the doctors and I was released— and then the 10th of July, I went to the Kaye Clinic, met my team of doctors, and came up with a plan. So we did that and started medication and therapies and kind of just digesting the news.

And then we bought a house. The house we were living in was too small and was not really going to suit my needs. So we bought a bigger house and my dad and my mum, friends, and community, all came together and renovated it. So we have walk-in showers, we widened all doorways just to be proactive for what our future is. The renovations were complete in November and we moved in and now we just live. My husband always says we live 15 mins at a time and we just do what we need to in that 15 mins and move on.“

“When you get diagnosed with something like this (ALS), you really take a step back and you look at your life and what’s important and what’s not. I’ve always been easy going, go with the flow, that’s my personality— but with a little bit of some high strung in there. Just like you know, the things that would maybe upset you like you burn supper. Like you can be a little hard on yourself, but now I’m like oh you burned supper? Just move on, order pizza. Like the little things have no importance and I’ve been given the ability to look at what’s important and who’s important in your life. Your address book changes, the people you thought would be there for you, maybe aren’t and the people you never expected, they come into your life and so it’s a gift as much as it is a curse. But I look at it and I think okay, you can either spend your days sad or hurt or mad, but at the end of it, that’s not how I want to live. So I have my moments where I am mad or sad, but then it’s over because really, that’s not what’s important.

You find joy in the little things. Like my kids, I'm so much more relaxed as a parent now. So I feel that with this diagnosis, it’s really also been a gift because you think differently about the world around you— what was important to you before you got diagnosed, is probably not important to you after you’ve been diagnosed. And the things that are important aren’t money or status or how many Facebook likes you got. What’s important are the people who are there. In a world where you’re so connected to your phone—I could go without a phone because that’s not your focus anymore. So it’s really been about disconnecting, unplugging, and focusing on the connections that mean something to you.”

“I feel that at first, you’re numb. I like to live in my own happy bubble, so I don’t dwell on the future. I’m realistic. I know what the future will be I guess, but I don’t dwell on it. But at the same time, you have to be proactive, so getting your ducks in a row. My speech has been affected. I used to be a very fast talker and now I feel like I’m a slow talker—so that’s been difficult. With managing (ALS), I am trying all the available drug therapies that I can which within Canada, there’s only 2 approved drugs and I am on both of them now—one of the IV drugs I take is incredibly expensive. But then we figured it out, we got the medical coverage that we needed to get the drug paid for. But I wish I could have known that in July so that I could have started the drugs in July versus October. But I feel that you need to have the right kind of mindset, if you have that negative mindset, I feel like your ALS symptoms are going to progress faster. You need to have a healthy mind and a healthy mental awareness I feel for any diagnoses. But for myself, I feel better if I’m having a good day. If my brain or my mind or my heart is sad, I don’t have as good of a day with my body.”

“So I feel like a big part of it is a healthy mind or a realistic wrap around of what you’re dealing with. You can’t just put your head in the sand, you have to be aware of it and proactive- so start voice banking, thinking about what are your next steps or where you’re going to have deficits. So for me, my speech is going to be a deficit so I want to get voice banking, video clips, and recordings, as well as maybe I need to start researching for an eye gaze, just the next set of equipment so that I already have an idea of how it works and how it runs. I make sure I call my brothers and they call me because I feel like you can lose touch with them if you are not seeing them on the regular due to COVID. So I think for them, their family values have become more important to them as well as for myself. Like we have huge community support, people coming together that you don’t necessarily know, but they’re dropping off a lasagna on your doorstep. People have shown up and weeded my flowerbed that I don’t know, so that’s been really nice. I guess that’s the beauty of living in a small town where everybody kind of knows you. I feel like the community has really come together for myself and my family, so that has been a blessing. You have ALS, ALS doesn’t have you. You really have to find the joy because it can be a long dark road, but it doesn't have to be.”

Danny Getzlaf's ALS Christmas Ice Bucket Challenge

In 2014, Pat Quinn and Pete Frates created the Ice Bucket Challenge, raising funds for ALS research around the globe, while simultaneously raising awareness of the disease. It also raised hope in every person living with ALS - the disease finally had the public's attention, and it was no longer a fight battled in silence. 

Today, Danny Getzlaf is relaunching the IBC here in Alberta, with a twist - last time, we were all able to participate in the warm summer months. It won't be quite as pleasurable in December! But don't we all need a little stress relief? And those of us with kids that we are quarantined with at the moment - doesn't throwing a bucket of ice-cold water on them sound fun some days? 

All joking aside, being in isolation this month in Alberta we can all suddenly empathize with so many that live with ALS. Unable to do the things that used to be commonplace. Unable to go to places that were like our second homes. Unable to hug our loved ones - for many with ALS, to be able to just lift their arms and give someone a hug is something they will never experience again. And that is what this campaign is all about. 

We do the Ice Bucket Challenge because we can - we can still lift our arms to raise the bucket; we can still take deep breaths after being doused by a surge of cold water; and we can still run away if the shock is too much. The Ice Bucket Challenge reminds us that despite our current Alberta quarantine, for most of us this is a temporary situation. For those with ALS, the restrictions are in no way voluntary and are even less temporary.

To participate in Danny Getzlaf's Christmas Ice Bucket Challenge for ALS, take a video of yourself (or your kids/grandkids) having a bucket of ice-cold water poured over your head (Danny’s includes a slow-mo replay, to give you an example). Then post on social media, make a donation here, and challenge at least three friends to do the same. Be as creative as you want! Please, of course, do not break any COVID regulations, or put yourself in any danger!

With the Christmas Ice Bucket Challenge for ALS, Danny is raising funds for the ALS Society of Alberta, which has continued through the COVID-19 pandemic to fulfill its mission: To make each day the best possible day for those living with and affected by ALS. The need this year is great, to ensure that the Society can keep providing the programs, support and equipment to Albertans living with the disease and their families in the future. 

Who is Danny Getzlaf?

Diagnosed with ALS in November of 2017, Danny is a passionate advocate and fundraiser, dedicating much of his time to raising awareness and funds for ALS, and supporting those living with it. His passion and tireless dedication connect with so many in the community, and as such he is the perfect person to relaunch the campaign.

As the 2019 Edmonton Walk to End ALS Ambassador Danny expressed it as such:  

“Like I mentioned before, I’m not a scientist like Stephen Hawking or a famous baseball player like Lou Gehrig. I’m just Danny from Morinville trying to do the best. Somehow I’ve been able to relate and touch people throughout the ALS community. They’re very supportive. They like what I’m doing. I’m just the voice of ALS patients this year. I’d like to continue that for years to come.”

Video credit: Stephen Dafoe of Soaring Pig Studios

We are OPEN.

Clients, Families, and Friends,

We wish to inform you that with the new restrictions put in place by AHS on 08/12/2020 we continue to maintain programs and services at both the Edmonton & Calgary locations. We remain dedicated to our mission to make each day the best day for those living with or affected by ALS.

If you find yourself in a situation in which you need to pick up or drop off equipment/items at either of the offices, we ask that you call ahead of time so that we can coordinate your visit with an available staff member.

Calgary Office : (403) 228-3857

Edmonton Office: (780) 487-0754

Support groups will continue to be held online at this time. For more information please email alscommunications@alsab.ca

We are here for you, please stay safe and reach out if you have any questions or concerns

ALS Society of Alberta

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.

Giveaway Alert - Facebook Fundraising Contest

We're in the midst of our GivingTuesday Campaign and we want you to get involved!

It's a challenging time to have traditional fundraisers with your family, friends, and community so we thought of a safe way to rally the troops and raise funds and awareness for the Society, all while having a chance to win a little something for your efforts!

You can start your own Facebook Fundraiser from the comfort of your home. “How” do you ask?

Go to “facebook.com/fundraisers”

Under “Raise Money”, click on “Select Nonprofit”

Search for “ALS Society of Alberta”, and click on it when the name appears

On the left-hand side, enter your fundraising goal, a fundraiser end date of December 2, 2020, and then a title and description.

Click on “create”,

It’s published! You can then share on your newsfeed, invite friends, and accept donations.

All donations come via Paypal to the ALS Society of Alberta, with no charge to you or the Society.

We have two prizes!

1st place (with the most funds raised) - $100 gift card to Indigo

2nd place (runner up of most funds raised) - $50 gift card to Golf Town

Both seem like some pretty great holiday stocking stuffers/gifts!

We will declare a winner at 4 pm on December 1st! Please let us know if you have started a fundraiser, as we don’t receive notifications when one begins.

Giving Tuesday 2020 - Equipment Loan Program

The ALS Society of Alberta's Equipment Loan Program is an integral part of how we fulfill our mission - to make each day the best possible day for those living with and affected by ALS.

By providing the required equipment at no cost to Alberta families, we reduce the substantial financial burden of this disease. Please watch and share this video as we raise awareness and funds to help families with ALS in Alberta.

Please help us continue to fulfill our mission, by supporting us this GivingTuesday.

https://www.canadahelps.org/.../giving-day-campaign-2020/