June 19 - Cheryl Ward

Today Cheryl Ward shares her #MakingItPossible story on day 19 of ALS Awareness Month.

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"I received a diagnosis Mar 7, 2017 for some speech and swallowing issues I’d been having and it wasn’t a good one; ALS (Amyotrophic Lateral Sclerosis to be exact). Doesn’t that just take the wind out of the sails? It was kind of a nasty outcome but it is what it is. At least now I knew and could deal with it.

The day after the diagnosis, I met with the whole ALS Clinic Team. Everything is all together at the South Calgary Campus. I attend a clinic every 3 to 4 months. I call it one stop shopping. It makes it so much easier. There was lots to learn about this disease, that’s for sure.

From December to May, I was privileged to take part in Dr. Korngut’s Pimizide double blind study. Hopefully, people facing this diagnosis will benefit soon from whatever results the study unfolds. I am now working with the ACETS people to personalize a communication hub for digitized speech and to retain the ability to use computers.

My sister and brother-in-law have been great. I couldn’t get through this without them. My next door neighbours are terrific and friends and family are very supportive.

It’s been a year now living with this disease. I can still do most everything, just slower, and most of it is thanks to the help and support of the wonderful people from the ALS Society. From special kitchen tools to walkers and manual and electric wheelchairs, they have made it possible to continue living my life with a great deal of independence. They provide a listening ear and a compassionate heart whenever it is asked for.

The ALS Society is needed to help us walk this incredibly complex journey with patients and families. Please do whatever you can to let this support continue."

Thank you Cheryl, for sharing your experience with us.

June 18 - Bill Goodwin

On day 18 of ALS Awareness Month, Bill Goodwin is sharing his #MakingItPossible story with us.

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"I was diagnosed with Motor Neuron Disease (MND) in 2014 and after a 3 year period of testing I got the official diagnosis of ALS in 2017. I started noticing problems in 2013 trying to step up on the curb and my leg just wouldn’t do it. I found myself stopping on the sidewalk to let people go by. I couldn’t balance or bend down and get back up again. I talk to my leg to try to get it to move, but it just doesn’t listen! Because my leg doesn’t listen I lost my ability to go from gas pedal to break and gave up my drivers license. The scooter supplied to me from the ALS Society allows me the freedom to get out and about and socialize with friends and neighbours, as I often do my half hour loop around the neighbourhood and it’s pet friendly too! Being able to socialize and get out and about is very important to me.

My family and grandkids are transitioning along with me; from seeing me go from a cane, to a walker to a wheelchair. I don’t want them to feel like they need to stay away from me. I’m still Papa and they accept the way I am, and know I’m not going to rub off on them, or it’s something they can catch or get sick from. I wanted them to know they don’t have to be afraid, I’m still the same person, just things are slower.

My son in law was scheduled to work the day of the Walk for ALS. His employer said “No” the Walk is more important and my son in law was there to support my team! That meant a lot to me. I am always doing something family wise and had a nice time with all celebrating my Birthday! We are thankful for the Society and everything they have supplied, but more importantly all the kind, supportive wonderful staff that are all Angels!"

Red Deer WALK for ALS

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This year marked the 15th Anniversary of the Red Deer WALK for ALS, and it was an overwhelming success! Hundreds of people gathered in Kiwanis Picnic Park to channel hope for a future without ALS, raising an incredible $89,000 and counting! Thank you to the Red Deer WALK for ALS Committee for all that you do, and to Michelle Parker and Deborah Hansen for your continued leadership!

Drayton Valley WALK for ALS

The first annual Drayton Valley WALK for ALS this past Saturday raised over $20,000! What an incredible achievement! Thank you to Melanie, Marcie and Nicole for all of your hard work in the planning of this event and all the volunteers and participants who came out to West Valley Lion's Park this past weekend.

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June 15 - Jim Christianson

Today we are sharing Jim Christianson's story on day 15 of ALS Awareness Month.

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"After constant MRI's and feeling very tired, I found the right doctor in 2009 where my new journey began living with ALS. I am affected by physical symptoms, but strong emotions and frustration are also a big part of my journey. I feel very inspired by other people at our monthly coffee group. It is important for me to get out and connect with other people, even though we are all different we are all on the same page. A few hundred pounds are lifted off your shoulders because you realize you are not alone and can relate to one another. I love joking around, smiling and making other people smile. This means a lot to me. I know this is hard on my whole family and they are all very supportive and I feel very lucky to have them in my life, as well as my precious pup Sassy!"

Jim loved his job working at the Fire Department for 10 years and later becoming a Press-Technician. "I miss working so much, but feel truly blessed my friends from work still come over."

Even though it's harder for Jim to do the things he once could do with ease, he continues to make a difference in this community of Barrhead. Just recently he donated his time and talent to his senior community by taking professional pictures of 17 individuals who celebrated their 90th Birthdays in June! "I enjoy helping others through my love of photography."

"I truly appreciate the equipment I have received to meet my needs and all the support given to me and my family through the ALS Society. They are awesome."

Jim also donated a print (a picture he took of a Cedar Waxwing) for our raffle table at the Edmonton WALK for ALS!

Thank you, Jim for sharing your #MakingItPossible story with us!

June 14 - Jody Round

On day 14 of ALS Awareness Month we wanted to take the opportunity to feature one of our Edmonton WALK for ALS Committee members, Jody Round.

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Some of you might recognize Jody from the Edmonton WALK during the warm up but Jody has actually been volunteering with the ALS Society of Alberta for several years now. Prior to her work with the Edmonton WALK for ALS, she was responsible for coordinating the Barrhead WALK for ALS for many years.

Not only was Jody responsible for pumping everyone up at the warm up for the WALK, she was also in charge of the VIP Table, parking, helped with the BBQ and numerous other tasks leading up to the WALK and the day of. Jody has been an incredible addition to the WALK Committee and has been such an integral part of #MakingItPossible for both clients and families to have a memorable time at the WALK.

Thank you Jody for all that you do on our WALK Committee and continuing to make such a huge impact in the lives of people living with and affected with ALS.

June 13 - Rick Meston

We continue with ALS Awareness Month with Rick Meston's #MakingItPossible story and becoming the Drayton Valley WALK Ambassador. 

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"I started showing signs of a medical problem early in 2016 but they became more serious by December of 2016. Over the next few months I went through many medical tests until November of 2017 when I was diagnosed with ALS by the neurologist at the ALS Clinic at the U of A campus. At the time I had no knowledge of the condition and didn’t comprehend what my doctor meant when he said it was the worst diagnosis I could get. As the condition has progressed with the destruction of all the muscles in my body, the loss of use of limbs and hands and the ability to breathe and the inevitable conclusion, I now know what he meant.

I must admit when the ALS Society approached me about being an Ambassador for their WALK, I was somewhat reluctant to have my situation out in the public. But I thought about all the support the ALS Clinic and Society offers and decided I should. The ALS Society through fund raising events like the ALS Walk supplies many things to make life better for ALS sufferers. Mobility aids like walkers, wheelchairs, porch and stair lifts, breathing devices and psychological help as well as funds for research that will someday hopefully find a cure for this terrible disease.

The love and support of my family and friends and the tremendous support of the ALS Clinic and Society helps me make the best of each day I have left.

Thank you."

Thank you Rick for sharing your story with us. The Drayton Valley WALK for ALS will be taking place this Saturday, June 16th.

June 12 - Andrew Debogorski

Today is day 11 of ALS Awareness Month, and we are sharing the story of Andrew Debogorski, and how he is #MakingitPossible to celebrate life's greatest milestones, including his beautiful wedding that took place in April.

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“On April 28, 2018, around 10 months after Andrew’s diagnosis, we married each other in the most beautiful church ceremony, in front of our dearest loved ones and supportive members of the community. The ceremony was incredibly uplifting and though we were surrounded by others, Andrew and I felt intimate with each other in this moment with God.

Following the ceremony was the reception, made entirely possible only by family and friends who completely planned the event from start to finish, making it a smashing success and everyone had an amazing time! It was no small event, with a guest list of 100 adults and around 30 children, and a massive potluck feast and sports bar turned into elegant reception venue! At the very end of the night, Andrew and I had a beautiful few hours together in our home and didn’t get to bed until almost 5am! This moment is one I will always hold in my heart and I thank God for every day. Andrew said the entire day had been like a “fairytale,” and continuously went on about how much he had enjoyed it. It’s only through the love and devoted support of our family, friends, and community, that we were able to make this day happen.

The ALS society of Alberta has been invaluable in terms of assisting with Andrew’s medical equipment, where unfortunately, the government of the NWT has not assisted, as ALS is currently not recognizable as an eligible disease to obtain extended health benefits. Most of Andrew’s daily needs are supported with equipment we’ve obtained through the ALS Society’s equipment share program, and our representative is always checking in to see how we’re doing and to offer us support in any way we can. We are so grateful for their support and it has made the biggest difference in preserving Andrew’s quality of life and dignity.”

Edmonton WALK for ALS

We had an incredibly inspiring day at the 2018 Edmonton WALK for ALS on Saturday. Over 1,000 people gathered in William Hawrelak Park to celebrate the lives of people affected by ALS in Alberta, and to raise funds for client support and research. We were honoured to have Tamis and Perry Rombough share words on behalf of our WALK Ambassador, Adam Rombough. Thank you to everyone who joined us, and to our sponsors, volunteers, donors, and participants for making this into one of the largest WALKs for ALS in Canada. 

June 9 - Adam Rombough

Today is day nine of ALS Awareness Month, and we are celebrating the 18th Annual Edmonton WALK for ALS. Today we will honour and celebrate the life of our Edmonton WALK for ALS Ambassador, Adam Rombough and his incredible contribution to the ALS cause. Again, Adam's "A-Bomb" team broke fundraising records and inspired the community to come together to channel hope for a future without this disease. 

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"My name is Adam Rombough and I am honoured to be the 2018 Edmonton WALK for ALS Ambassador. I have always approached life with passion and determination no matter what challenges I am faced with. In October of 2016 I was out for lunch with a client who asked me how long I have been waiting and how many drinks I had already had, because my speech was slurred. The answer was zero; this was one of the many symptoms that I had been experiencing. When I asked my family doctor he did not seem concerned, he brushed me off. After months of pursuing answers from other doctors, in February of 2017 at 32 years old I was diagnosed with ALS, a disease that is always fatal and has no cure. Because of these facts I chose to accept my diagnosis, rather than sitting around feeling sorry for myself. I embraced opportunities that were being presented to me. Within one week I had retired from my career, and then I started living my life the way I wanted to. I began by traveling and started working on a documentary about my life with ALS. I also spend a lot of time developing the relationships that I value the most, because I have realized that that is the most important thing in my life. 
    
Even though I choose to look at the positive things in my life everyday there are countless obstacles that I must face: relocating, renovating a house to fit all of the needs of being in a wheelchair, scheduling endless medical appointments, and purchasing and finding the right equipment to best suit my ever-changing needs. All while losing my ability to speak and take care of myself.  It has been overwhelming to say the least. Throughout my journey I have realized we are not lacking loving and caring professionals who are willing to do what it takes to make my life easier and more comfortable. What we are lacking is funding and research which is why I am humbly asking you to get on board with supporting the ALS Society of Alberta. 

The work that they do and the research that they fund has allowed me to focus on living my life to the fullest. I like to believe that I am not slowly dying, but I am quickly living". 

June 8 - Glen Jarbeau

Today we are featuring Glen Jarbeau and his wonderful commitment to celebrating life and seizing every opportunity. Glen has been an exceptional advocate for the ALS Society of Alberta, attending the legislature to advocate for the best possible care and participating in media interviews. Just yesterday, Glen was interviewed by CBC Radio Active Edmonton to talk about his journey with ALS. Click here to listen. Read Glen's story below, specifically about how he succeeding in #MakingitPossible to attend his brother's wedding!

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"Three months ago I told my brother and sister in law I didn't think I would make it to the wedding, but my spirit is strong....and I got there! A big team of people made it possible for me to have the equipment needed to attend my brothers wedding in Calgary. I cried like a baby at the wedding and made everyone else cry too. Being with the people I love is kind of like a long goodbye or a long farewell. 

I have received excellent care from the whole medical profession and with the support of the ALS Society I'm able to stay at home to spend more time with friends and family. Although ALS is a relatively rare disease the needs of ALS patients are shared by many others. Most of us or those closest to us will need Homecare at some point in our lives. I appreciate the recent investment the government has put into Homecare and recently I met with Associate Minister Brandy Payne and thanked her for the great care and ensued a friendly challenge for her and her staff to spend a day every year with a patient!"
 

June 7 - Maria Dixon

Today we are celebrating Maria Dixon and her dedication to #MakingitPossible in raising funds for the Edmonton WALK for ALS! She has already raised nearly $900 for this cause. Read her story below.

 "I first began seeing odd symptoms, it began with slurring of my speech and I began losing the use of my right hand and arm. That was July 2016. The beginnings started with many trips to Edmonton to see Neurologists. Still with no diagnosis I went on the internet to find out where my symptoms fit. After going to medical appointments for five months I asked if it was ALS. They were surprised by my question! Therefore it was January 2017 that I was given a definite diagnosis. That's when my world turned upside down. There was no support system in my home town of Grimshaw to help me. So I made up my mind to move to Edmonton where I had a support system and was determined to make the best of it. It is very hard not to have family close by because it limits me for going out. I am determined to live the rest of my life to the fullest despite many challenges. Together with friends and family and support staff from the ALS Society and the Norwood Extended Care gives me the courage and hope to continue my journey living with ALS.  Thank you all for supporting and sponsoring my ALS WALK on June 9th!"

"I first began seeing odd symptoms, it began with slurring of my speech and I began losing the use of my right hand and arm. That was July 2016. The beginnings started with many trips to Edmonton to see Neurologists. Still with no diagnosis I went on the internet to find out where my symptoms fit. After going to medical appointments for five months I asked if it was ALS. They were surprised by my question! Therefore it was January 2017 that I was given a definite diagnosis. That's when my world turned upside down. There was no support system in my home town of Grimshaw to help me. So I made up my mind to move to Edmonton where I had a support system and was determined to make the best of it. It is very hard not to have family close by because it limits me for going out. I am determined to live the rest of my life to the fullest despite many challenges. Together with friends and family and support staff from the ALS Society and the Norwood Extended Care gives me the courage and hope to continue my journey living with ALS.

Thank you all for supporting and sponsoring my ALS WALK on June 9th!"

June 6 - Rocky Leer

Today we are sharing the story of Rocky Leer, who is #MakingitPossible with his family and friends to live each day with hope and optimism. Read his story below!

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"Hello my name is rocky and this is our story. I say our story because thank God I'm not going through this alone. I was blessed into a large caring family great friends and have made some wonderful new friends that support each other in our individual journeys.

February of 2016 is where things started. Like a lot of people that year, layoffs caught up with me and I was out of a job at 52 years old and within a month I developed a slight limp on my right leg. At first I wasn’t worried at all; I hadn’t gone more than three weeks without working my entire life and chalked the limp up to falling on some ice walking the dog. But the limp just got worse and at 52 finding a job was far harder than I ever experienced, and five years prior I went back to school and became a drilling fluids engineer. Going back to school and then my father getting sick with a respiratory illness where he was in foothills ICU for two months had already put us in debt so we sold our house before we lost all equity. Getting back to the limp it wasn’t going away so much for the slipping on ice theory. I went to our doctor in Red Deer, he seemed to think it was a old injury to my back but put me on a waiting list to see a neurologist.

At the same time we decided to make the move to Medicine Hat, something we had thought of doing for awhile because our oldest son lived there with our daughter in law and two of our three Grandkids and after all it sounded like I was going to be fixed with an operation. Things were starting to pick up as I was contacted by my former employer and told to stay in touch things we’re looking up.

But that optimism didn’t last long, I needed a cane to walk I began to fall down and my arms were starting to get so weak I couldn’t pick up my Grandkids. Finally my doctor in Medicine Hat realized this was no back injury. It was over a year since I was put on the waiting list to see a neurologist still no reply now I was being fast tracked. I had checked my symptoms online and ALS was the first thing that came up but I wasn’t experiencing any problems breathing or swallowing so I dismissed it or more accurately wanted to dismiss it I was convinced I had MS.
Like I said I was fast tracked now to do an MRI and see a neurologist and within 20 minutes I was diagnosed with ALS. It was like the world was pulled out from under my feet. When you’re told you will be in a wheelchair and your average life expectancy is 3-5 years it feels deflating and watching the ripple effect on friends and family is heartbreaking as I said we had recently had to watch our father, grandfather and great grandfather go through his terminal illness and my family did not need this at all.

The diagnosis was devastating but for the first time in two years we knew what we were finally dealing with and as crazy as it sounds it was a relief. I hadn’t been able to work now for two years and my EI was done we lost one of our vehicles and had to apply for government assistance.

Now here’s my favourite part of the story, remember the friends and family I was bragging up at the start this is where they come in. The only good thing that came from this whole ordeal was the overwhelming love and support from my friends and family and to say the people at the ALS Society are great is a gross understatement I’m so glad to have them in my corner. And having served in the military, acknowledgment to my military family who without them I wouldn’t have known Canada is the only country in the world who recognizes the link between service and ALS.

And the Royal Canadian Legion who also stepped up now we are working together to help reach other veterans with this disease. Because of all these wonderful people I can enjoy the time I have and have a greater purpose and watch my grandkids grow up. The picture I’ve shared is from the night we were guests of Michael Backlund to a Kings vs Flames game it was the best night we had had in forever. All of us are die-hard fans and it was my Grandson and daughter-in-laws first NHL game I’m planning on taking my other two Grandkids to their first game next season. I’m not sure how to end this except with what I say to fellow ALS warriors and what they say to me and that’s one day at a time and hope, there’s always that." 

June 5 - Danny Getzlaf

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Today is the fifth day of ALS Awareness Month, and we are celebrating Danny Getzlaf and his amazing contributions to awareness and fundraising in Morinville and beyond. Danny has been hosting a number of initiatives in support of the Edmonton WALK for ALS, including button sales, BBQs, raffles, silent auctions, media interviews, meat draws and more. This past weekend, Danny and his community raised over $11,500! The support that Danny has garnered in his community has made such a significant impact for the Society, and has raised a tremendous amount of awareness. Danny has even coordinated buses to transport folks from Morinville to the Edmonton WALK for ALS on Saturday! Danny has been #MakingitPossible for his team to reach its fundraising goal $30,000, which will greatly aid in the Society's mission of making each day the best possible day for people living with and affected by ALS.

Thank you Danny for all that you do for this community! To read more about his fundraisers, click here.

June 4 - Chad Keenan

Today is day four of ALS Awareness month, and we are sharing Chad Keenan's story and how he succeeded in #MakingitPossible to go to Vegas and watch the Knights in the playoffs! Read his story below.

"What happens in Vegas… simply must be shared!

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My ALS related symptoms started slowly, progressed over many months, and this past year impacted my activity levels to the point of frustration.  It was early in May 2018, age 42, that I was officially diagnosed with ALS.  By that time, my active routine of coaching both of my daughters’ soccer teams, providing assistance to my 85 year old grandmother with vision loss, and living la Vida loco travelling with family, hiking, biking, watersports and choosing stairs over elevators, was being replaced by a sedentary existence.

It feels better to know the beast within.  While the emotion of being diagnosed with ALS is best described by the expletive rant of a drunken sailor, putting a label to my degenerating health issues, has been a re-launching point of perspective and appreciation.  Days after sharing my diagnosis with family and friends, my best bud Kyle sent me a text, asking if I am keen to fly with him to Las Vegas later that week to watch playoff hockey; his favourite NHL team the Winnipeg Jets take on the Vegas Knights.  YES, is what I instantly wanted to respond, but I did not.  In my head, I questioned how I was going to physically take such a trip.  Earlier this year, I regrettably cancelled a long awaited vacation with my family, thinking my physical limitations of being on crutches, exhausted all the time, unbalanced and frequently falling, would nullify any enjoyment of the trip for myself and those with me.  How would I be able to enjoy Vegas?  Kyle was unwavering in his commitment to make it work, push me everywhere in a wheelchair and do up my buttons if need-be.  My family was supportive and encouraging, and then the final piece of the puzzle presented itself.

Having only been diagnosed with ALS the week prior, my rather empty schedule had quickly filled up with visits to the Neuro-Science team at the South Health Campus in Calgary, along with home visits and telephone conversations with ALS Clinic representatives from Alberta Health Services and representatives from the ALS Society.  Where initially my family and I began to muddle through imagining how best to move forward and cope with my diagnosis, a team of support joined us!

Like a timely entrance of a movie action hero, Leslie and her colleagues with the ALS Society, upon hearing of my Vegas trepidation, offered me a motorized scooter.  I had not thought of utilizing a scooter.  Leslie promptly delivered the scooter to me at home.  Later that day, for the first time in ages, I experienced an unassisted neighbourhood walk/scoot.   It was so freeing; the motorized scooter enabled me to re-gain independence. I was looking forward to Vegas!

Now for those that don’t know, Las Vegas is super accessible for wheelchairs and scooters.  Ramps and elevators everywhere to take you up and over streets, around stairs, and into shows and the newly built T-Mobile Arena where the Vegas Knights play.  We enjoyed the hockey game, watched shows, toured the sights and sounds of Vegas from one end of the strip to another, and even travelled via taxi and Uber to and from the airport, thanks to the portability of the scooter dismantling and assembling in less than a minute.  Amazing!

I was emotionally touched by the ALS Society for providing me with a scooter.  I continue to appreciate their support in improving the accessibility of my home.  The ALS Society makes it possible for me to overcome challenges and better enjoy those all too precious moments in life with my family and friends.

With sincere thanks, Chad."

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June 2: Shirley Sigurdson

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Today marks day two of ALS Awareness Month, and today we are sharing Shirley Sigurdson's story. Our client services team joined Shirley at the zoo on Wednesday so she could see the pandas. We provided a tilt manual chair that could allow her to see the pandas safely and comfortably. We are so happy we could help in #MakingitPossible for Shirley to attend this monumental exhibit, and are thrilled she had such a great time!