June 15 - Jim Christianson

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

"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.

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. 

"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.

“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.”

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. 

"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!

"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!"

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!

"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

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!

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."

June 3: Wayne Thomas

Today is the third day of ALS Awareness Month, and we will be joining Global Calgary at 8:40 a.m. for an interview with our Betty's Run for ALS Ambassador, Wayne Thomas. Thank you Wayne for #MakingitPossible to spread awareness about ALS throughout Calgary. Click here to read his story.

Click here to watch Wayne's interview!

June 2: Shirley Sigurdson

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!

ALS Awareness Month Begins with John Orfino: June 1

Today marks the beginning of ALS Awareness Month across Canada. To honour our incredible community, we will be sharing a story each day from someone living with or affected by ALS. Today we begin with John Orfino, and how he and his friends and family are #MakingitPossible to have regular poker nights!

"My brother Glenn wondered what he could do to entertain me because I am bed ridden and watch TV all the time. So he brought one of his poker tables and 6 to 9 guys come and we play Texas Hold-em for a couple of hours once a week. I look forward to the next game because I have so much fun with the boys. I’ve programmed my computer with poker lingo and sayings that make the guys laugh. I have become a poker Shark but the guys keep coming back because they know how much fun I have. I am so thankful for my brother Glenn who absolutely hit a grand slam by creating a legitimate poker game night for me to have so much fun."

June 30 - Colin Davis

Wow, today marks the final day of ALS Awareness Month. We are so grateful for each and every story we received, and it was an absolute privilege to share the ways that our clients, volunteers, and donors are #MakingitPossible. 

Today we celebrate one of the most committed, hard-working fundraisers in the country, Colin Davis. Each year, he works tirelessly to raise funds for Betty's Run for ALS. Betty’s Run is all about inspiring care, hope and community for those living with and affected by ALS.

Fourteen years ago, Colin lost his Mom to ALS. Ever since, he has quietly worked behind the scenes to support the ALS cause. Incredibly, Colin has raised over $200,000 for ALS research and client support. Most importantly, Colin does this because he wants to make a difference and by sharing his story with his friends and family. Colin has raised an incredible amount of awareness about ALS.

It is Colin’s belief and commitment to ensure people living with ALS receive the necessary support and also to help to find a cure. The ALS Society could not provide the supports without the great work of Champions like Colin. Thank you Colin for #MakingitPossible.

June 29 - Peter Benders

Today we are celebrating the 2017 Hinton WALK for ALS Ambassador Peter Benders and his inspiring dedication to raising awareness in his community. 

“Hi, my name is Peter Benders. I am 67-years-old and have been living in the Edson area for 38 years. I have worked as an electrician in the oil field. I retired at 65 and started working on all of the unfinished projects at home. This lasted for about a year, but later that summer I noticed slight muscle twitching in my arms. In addition, I began to experience cramps in my hands and arms, and some muscle weakening. Shortly after my first symptoms, I saw my doctor who was not taking any chances and referred me to a neurologist. The test results were not positive at the time, but she wanted to see me back in six months. At that time she told me “I hope I am wrong, but I think it is ALS,” and referred me to the ALS Clinic at the University of Alberta Hospital where the diagnosis was confirmed. Still not knowing how bad this disease actually was, I was undergoing more tests. The first time I met with the ALS team I was asked questions like “Can you still eat, breath, talk, look after yourself, etc.” I then knew what I was facing.
Fortunately for me the progression of my ALS journey has been relatively slow. I always had 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 the mountain.

With all of this in mind and the help of the ALS Society of Alberta, the ALS team at the University of Alberta, Edson Healthcare Group, the love of my friends and family and the support of Mikael Backlund with the Calgary Flames who helped in #MakingitPossible for me and my family to go to the Flames vs. LA game in February; all of this inspires me to continue and be thankful for the life I have lived and to make the best of each day I have left.

The love and support of my family, most of them in the Netherlands and the financial support by Canadians gives me hope that one day we will find a cure. The WALK for ALS is extremely important in raising the awareness of this disease. Hope to see you all at the Hinton WALK for ALS on Sept. 10, 2017. Thank you.” – Peter Benders

June 28 - Angus "Scotty" Smith

Angus Smith, better known as “Scotty”, is a celebrated musician, teacher and a ham radio operator. One of his proudest successes was when he made contact with astronaut Chris Hadfield. Scotty has not let ALS stop him from sharing his musical gifts, and he still shares or offers instruction. His past students even visit and play for him. Scotty is originally from Scotland; he jokes about renaming his Stratocaster guitar the “Scottocaster”. He has played with musicians from all over the world and played at very prominent venues. This very talented man continues to share his stories and everyone is simply drawn to him.  Scotty shares what a difference the ALS Society has made. The tilt manual chair and the EZ-lift chair have made getting around and relaxing less of a challenge and are #MakingitPossible for Scotty to embrace his greatest passions!

June 27 - Helen Banks

We are nearing the end of ALS Awareness Month, but we still have some incredible stories to share! Today we are celebrating Helen Banks and how she uses mobility equipment when #MakingitPossible to live each day to the fullest. 

"When I was diagnosed with ALS, my daughter Kim and family invited Jim and me to live with them in the Bar-F Ranch House just west of Hinton so they can assist Jim in looking after me. I am very grateful to the amazing ALS Society for providing a lift chair, walker and scooter so I can manoeuvre the long distance from the kitchen to the parlour and outdoors. Energy management is one of my greatest challenges and the equipment makes life easier. Many thanks to the ALS Society staff!

In order to maintain a positive outlook, I treat life as an adventure and moving in with the Tew family has just extended my adventure." - Helen Banks

June 23 - Wayne MacIntosh

For today's #MakingitPossible story, we would like to honour Wayne MacIntosh, a Fort McMurray resident who is currently living with ALS. In April of 2014, Wayne began experiencing muscle twitches, weakening, weight loss and fatigue. His doctor at the time was unfamiliar with ALS, driving Wayne to consult with a different doctor, who then referred him to a neurologist. After several weeks of testing, Wayne’s neurologist concluded that he most likely had ALS, and referred him to the ALS Clinic at the University of Alberta where the diagnosis was confirmed.

At first, Wayne found it shocking to learn that he had acquired a disease with no cure that is typically fatal within three to five years from symptom onset. Over the next few months he retired from his job and spent time with friends and family across Canada and in the United States. Wayne has also acted as an Ambassador for the Fort McMurray WALK for ALS, taking place on July 16 in Birchwood Trails. 

“The love of my friends and family and the hope for a cure for this terrible disease is the fuel that provides me with the inspiration to be thankful for the life I’ve lived, and make the best of each and every day I have left,” Wayne said. “The WALKs for ALS are extremely important in raising awareness of this disease, and help fund research that will one day find a cure.”

Thank you, Wayne.

June 22 - Henri Unverricht

It is day 22 of ALS Awareness Month, and today we are celebrating the 2017 Camrose WALK for ALS Ambassador, Henri Unverricht! Thank you Henri for #MakingitPossible to raise further awareness in the Camrose area. Be sure to join us this Saturday for the Camrose WALK for ALS! Visit www.walkforals.ca for further details. 

"Without the ALS Society, I wouldn't have been able to stay at home as long as I could. It's always done on a family level. We are one big family - personal connection with the people, both family and staff. My sleep quality is very good with the bi-pap; it helped right off the bat. The moral and physical support is exceptional as well as support for the family. In the summer of 2015 I experienced shortness of breath and in May of 2016 I was diagnosed with ALS. I lived in Camrose with my wife Violet since 1993 until 2004. In 2004, we moved to Edmonton, then back to Camrose in 2012 where my wife was born and raised. I was born in Lausanne, Switzerland." - Henri Unverricht

June 21 - Ken Goudie

Today we are celebrating Ken Goudie in honour of Day 21 of ALS Awareness Month. Ken shared that without his lift chair, he would have to stay in either his bed or his wheelchair. His lift chair gives him an opportunity to "visit a very cozy spot". Thank you Ken for sharing your #MakingitPossible story!