Making it Possible

June 24 - Thank You To Our Volunteers

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We would like to recognize and highlight our volunteers on this 24th day of ALS Awareness Month.

Most of the ALS Society’s events - including the Walks and Betty’s Run, would not be possible without the ongoing support of our volunteers.

From the organizing committees to our volunteers on the day of the event, we are so fortunate to have such an amazing team of volunteers across the province that continuously donate their time and effort to support families affected by ALS in Alberta.

 Thank you to our volunteers across the province for all that you do and continuing to make such a huge impact in the lives of people living with and affected by ALS.

June 23 - Brent Adams

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For the 23rd day of ALS Awareness Month we are featuring Brent Adams. Thank you Brent for sharing your story.

I was diagnosed with ALS in 2013 but had signs of the disease two years before this. I kept losing my balance and falling. It has been a slow processing of this disease, that has been a blessing and a curse depending on what is happening at that time. I’ve been very fortunate with having the support of the ALS Society of Alberta and the ALS Clinic at South Health Campus. I would never been able to deal with all the changes this disease has made to my life. Every change has given a new challenge to figure out how to deal with it. At first it was walking sticks, then a walker, manual wheelchair, scooter, and now a power wheelchair. These changes and equipment have not been easy to adjust to but with the patience and understanding of the ALS support team the transition has been easier. The latest and greatest equipment has been my new power chair. It has given me the freedom I never thought possible. It took me a while to learn to control it and is has left a lot of marks on the walls and baseboards to prove it. I have discovered the use of the lift and tilt of the power chair. I can now get into the upper cupboards where all the snacks are kept. I can use the microwave and now I can finally barbeque. I haven’t been able to cook my own steak for many years. The ALS Society provided me with a ramp to our back deck so I can get on the deck with my power chair. This might not seem like much but it is everything for me as I can enjoy the backyard barbequing with our friends. These little treats make all the difference with not allowing this disease to take over your life. It’s also been great having the support of family and friends who are on this journey with me.   

June 22 - Sharon Wood

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Today we are featuring Sharon Wood on day 22 of ALS Awareness Month.  Thank you Sharon for sharing your story.

TOES? That’s correct, toes! It all began with my toes.  We were in southern California for the winter and I was on my way to the pool when I walked out of my left sandal.  Somewhat baffled, I slipped the sandal back on and finished my walk.  In the weeks to follow this became a fairly common and annoying occurrence.  Little did I know on that sunny day in February 2017 that I would go from walking unaided to using a cane, then a walker and finally a wheelchair.  Having this disease has given me many opportunities to explain what ALS is and talk about my journey.

One of the exciting results began with a friend who, when she read about the Lethbridge Walk to End ALS, formed a team calling them Team Woodfest.  They entered at the last minute and had a successful outcome.  She has already started planning for this year.  ALS will eventually be solved, in part by the efforts of thousands of folks like my friend.  Every dollar raised helps in aiding ongoing research.

June 21 - Gish Warriors

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It’s day 21 of ALS Awareness Month! We have heard some amazing stories so far and today is no exception. Today, we are featuring Elmer S. Gish School in St. Albert.

Students, teachers, and parents at Elmer S. Gish School have been working endlessly on their fundraising efforts towards the ALS Society of Alberta. Some of the different activities they have done over the past year to raise funds include collecting pledges for their triathlon and Gym-a-thon, selling hot chocolate, lemonade, freezies, and friendship bracelets and the much anticipated Ice Bucket Teacher Challenge which took place during the school’s year-end assembly.

Not only have they raised surpassed their fundraising goal and raised an incredible $10,600, but they have also done a fantastic job of spreading awareness of what ALS is, how it can effect anyone and how the cause is near and dear to the members of the Elmer S. Gish community. 

Thank you to every single student, teacher, and parent who donated, raised money, and participated in these events. Your funds will make such a difference to those who are living with and affected by ALS and we are so grateful for all that you have done!

June 20 - Joyce Berg

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Today marks day 20 of ALS Awareness Month and we would like to share a story from Joyce Berg.

In March 2005, Joyce started having problems with her speech.  Then in November 2006, she was diagnosed with PLS.  This was devastating news but with her positive attitude she accepted the challenge and vowed to make the best of each day.  

The ALS Society of Alberta has helped make Joyce’s journey a little easier so she wanted to give back to the Society.  Joyce and her husband are participating in their 8th Lethbridge Walk to End ALS this year.  Over the years they have had friends and family join in the Lethbridge Walk too.  To date, Joyce has raised almost $50,000 and she hopes to reach $60,000 this year.

Joyce always has a smile on her face and says she couldn’t do it without the love and support of her family and friends.

Thank you so much, Joyce, for sharing your story with us.

June 19 - Katherine Gartner

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On day 19 of ALS Awareness Month, we are featuring a story from Katherine Gartner.

Since my diagnosis last year, the ALS Society has been with me every step of the way.  Their genuine concern, ongoing support, encouragement and the extensive equipment loan program has Made It Possible to adjust to my new reality.

Family outings, including a trip to Las Vegas, Nevada and St. George, Utah, and a recent trip to Edmonton for my brother’s wedding as well as park picnics and bbq’s were made so much easier by using a transport chair and walker.

Last fall I was invited to attend a Calgary Flames game courtesy of Mickael Backlund and the ALS Society.  What an exciting evening and yes, Mikael led his team to victory by scoring the first goal of the game.

The combination of Calgary Transit Access and the recent addition of a power wheelchair from the ALS Society has Made It Possible for some sorely missed independence.  Not only can I attend some of the numerous medial appointments on my own, I can now spend a warm afternoon at the zoo, go over to my mom’s for a visit or spend a rainy day at a shopping centre.

Together with my family, we thank the ALS Society for all they offer us as they make this journey so much easier.

June 18 - Bill Isbister

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On day 18 of ALS Awareness Month, we are featuring Bill Isbister.

I first started to notice some muscle loss about 3 years prior to being diagnosed and I knew something wasn’t quite right, later I was diagnosed with ALS on July 24th 2018.

I grew up with 6 brothers in my family and no sisters. I was building cars at a very young age before becoming an Auto-body Mechanic for 42 years.  I often think how I laid every brick and rock in our yard at our family home, how I built the greenhouse out of old collected windows and doors. Everything I did I used my hands so I miss my hands, along with my arms, I can’t hug or clap my hands anymore, it’s the little things.

I enjoy the coffee groups we attend and I am grateful for all they provide, we have learned a lot about things we never knew we needed. This is a very merciless disease that affects any race, occupation, age, religion, rich or poor. Our strong faith sustains us through the changes and loss of dexterity. We are all affected very differently but everyone is affected. I hope sharing my story is a voice to help others, to raise awareness; as well it brings a measure of comfort to express my emotions.

We are grateful for the love, friendship and support of our family and those we continue to meet. We would like to thank Mikael Backlund from the Calgary Flames for providing the opportunity for me and my family to attend the hockey game Calgary vs Edmonton. It was a wonderful experience.

June 17 - Dale Block

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We can’t believe it’s already day 17 of ALS Awareness Month! Today, we are hearing from Dale Block.

“Two years into our diagnosis, we can say that we are making the best of our time.  With the help of our family and the ALS Society, we have been able to take a number of trips to places all over the world.  The Society has lent us a variety of equipment or has arranged for it to be available on the other end of a trip.  Various family members have taken holidays with us and even our caregiver was able to come on one trip. This has made it possible for us to deal with all our needs on a travel and daily basis.  The clinic in Calgary has been second to none and the ALS group has been a great and compassionate support emotionally and has helped us to connect with other clients who truly understand.  All these new connections are invaluable and we are so very grateful for them.  With care from professionals, organizations, the ALS Society and our friends and family, we are able to enjoy as many of our days that we can and make memories that will be with us forever.”

Thank you so much, Dale, for sharing your Making It Possible story with us.

June 16 - Ken Rusk

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Today is day 16 of ALS Awareness Month and the Hinton Walk to End ALS. We are featuring the Hinton Walk Ambassador, Ken Rusk and his Making It Possible Story.

“My name is Ken Rusk, and I am honoured to have been asked to be the Ambassador for the Hinton Walk to End ALS on June 16, 2019. I would like to share some of my story with you including how I became afflicted with ALS and my journey with it so far. In late October of 2016, I suffered a deep muscle injury to my left calf.  After months of this injury not fully healing, I began to notice a constant twitching in my left thigh. After a couple of more months passed by, I noticed the twitching had moved up the left side of my body and into my left shoulder. I reported the twitching to my doctor and she scheduled me for an MRI. The MRI came back inconclusive and I was left with no definitive answers. Early in the spring of 2017, I was out walking with my daughter and she noticed that my left foot kept slapping down on the ground with each step I took. I simply wrote this off as a result of my calf injury, which had still not healed completely. At a following appointment with my doctor, I told her about my concern and she diagnosed me with drop foot. She then scheduled me to see Dr. Makus, a neurologist at the Hinton General Hospital in November of 2017. After noting the twitching in my left thigh, Dr. Makus asked me if I had ever heard of Lou Gehrig’s disease. He recommended I go for further testing.

Two months later, on January 9, 2018, Dr. Kalra, a neurologist at the Kaye Center in Edmonton, confirmed that I indeed had ALS and immediately put me on permanent disability. Over the course of the next few months, I was able to continue to be fairly active and mobile with the use of my walking sticks and a brace on my left foot. A few months later, I found myself in need of a walker. And finally, in February of 2019, an electric wheelchair became necessary as the disease continued to progress.

Throughout my struggles of the progression of ALS, I have to thank Christy and the ALS Society of Alberta for providing me with the equipment that I have needed to make my life more comfortable. In addition to providing the walking assistance equipment, they have also equipped my home with stair lifts, as well as a wheelchair lift to provide me easier access to and around my home. Without the ALS Society and the support of my family and friends, I could not imagine what life would be like trying to cope with this disease. So I would like to thank everyone for their support and encourage everyone to come join us at the Hinton Walk to End ALS on June 16, 2019 at the Green Square in Hinton to help raise awareness and to support all people affected by ALS.”

June 15 - Leading Edge Mobility

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Today we are featuring one of our vendors, Leading Edge Mobility for day 15 of ALS Awareness Month.

Leading Edge Mobility, located in Lethbridge, is one of the vendors the Society has been working with for many years.  They deliver, pick up and maintain our equipment that is on loan to clients. The Leading Edge Mobility team is very knowledgeable and responsive to the needs of clients.  Leading Edge Mobility works with our equipment team and Client Services staff in providing the right piece of equipment to best fit the needs of each client.  Their care and understanding of client needs is greatly appreciated.  Responding in a courteous and timely manner helps make each day the best possible day for clients and their families.  With their support we are helping clients Make it Possible.

To learn more visit www.leadingedgemobility.com

June 14 - Jim Park

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On Day 14 of ALS Awareness Month, we are sharing Jim Park’s Making it Possible story.

“My name is Jim Park and I was diagnosed with ALS on April 4, 2018. That day changed mine and my family’s life forever. My words were starting to come out slurred and I did not know why. Fast forward thirteen months and I am reminded daily of the severity of this horrible disease. In November of 2018, I stopped driving, and eating or drinking anything by mouth. I am also on breathing assistance during sleep and my hands don’t really work anymore. I can no longer speak at all and use an iPad with text to voice apps on it. Fatigue is one of the hardest things to deal with as I ‘run out of gas’ at the most minimal movements. My family helps with everyday living challenges and my wife is exceptional at keeping me grounded and happy.

I am happy. I’m happy because I have my family and friends and the ALS Society to help me navigate through this time in my life. The ALS Society has introduced me to many people that know exactly how I feel and we can communicate our thoughts and issues. I can borrow whatever equipment I need and the Society is there immediately to make sure everything is in order – how cool is that?! My family and I may be living with ALS but the Society makes things so much better and for that, I can’t thank them enough.”

Thank you so much, for sharing your story and your kind words about the Society. We are always so grateful to hear stories about how the Society can help.

June 13 - Len Landry

We are so excited to share Len Landry’s Making it Possible sotry for day 13 of ALS Awareness Month.

“I was diagnosed with ALS in September 2013. I had symptoms for about a year and wasn’t too sure what was going on. It is amazing how much love I was shown that I didn’t expect from people from my past and present. 

I grew up having fun, with a sense of humor and I’m kind of crazy. That’s just part of my DNA and that never changed, even since being diagnosed with ALS. Like I told my daughter ‘rough and tough and hard to bluff and ‘you gotta stay positive’, so I may as well practice what I preach.  When I was still living at home I wrote ‘you gotta stay positive’ on her bathroom mirror with her lipstick to remind her, it’s going to be okay.

I know I am in the best home now that I can be in at the Good Samaritan. The staff here are great and I feel pretty lucky and blessed to be here. My favourite time is lunch/dinner where I can be the “class clown” and make other’s laugh. Not to mention our social group, we call ourselves “The Southside Wheelers” as we all like to get out and about watch some sports and still go for the odd beer. There is no judgement as we all have different diagnoses.

I can’t be any more grateful than I am for the ALS Society and everything they have done for me through all their support and equipment provided. I feel very blessed.”

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June 12 - Les Bodnarchuk

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On day 12 of ALS Awareness Month, we are sharing Les Bodnarchuk’s Making it Possible story.

In November 2016 I started experiencing some loss of mobility in my right foot.  In August 2017 I was diagnosed with ALS.  Since then I have been attending the ALS Clinic at South Health.  The entire staff at the ALS Clinic are there with me every step of the way and provide tremendous support in helping with the changes.  As the disease progressed, I realize how fortunate I was to be supported by the ALS Society.  At each turn of events the ALS Society provided valuable pieces of equipment, advice, and emotional support.   This helped me maintain quality of life and allowed me to stay in my home with the help of my wife, Jean.

Last December, with the support of the ALS Clinic, the ALS Society of Alberta and the ALS Society staff in Ottawa, I was able to attend my daughter’s wedding in Ottawa.  As an added bonus, I was able to walk my daughter down the aisle and have the first dance.  Thank you everyone for helping create a beautiful memory.

Early on in this disease, I promised myself that I would not be bitter or angry.  I try not to look back on my life and activities. My world and capabilities are shrinking.  Facing each day brings challenges that are mentally and physically exhausting.  I chose to view my daily life through a positive lens.

This year for Betty’s Run, I chose ‘Making Lemonade’ as my team name.

There's an old adage that says, ’When life hands you lemons, make lemonade’.

It is a phrase that gets used and said without much depth or detail. If you do nothing, the lemons will dry up, shrink and go moldy.  Or you can open it up and squeeze every drop out of it.  For me, I could not do this myself.

I have been humbled to the core of my heart with support in helping me ‘make lemonade’.  

ALS is causing a moving target of physical and emotional needs.  It has taken a large village to provide the support and equipment required for me to make the most of each day.

June 11 - Marjorie Ebanks

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Today we are featuring Marjorie Ebanks and her #MakingItPossible story, as told through her family.

“Even though Marjorie lost her fight to ALS on March 15, we believed she would want to focus on what was made possible for her while alive.  What we believe would be her own words, we think she would write something like this:

‘While living with this disease, I tried to focus on the blessings in my life including all the things that seemed impossible but made possible.  Friends rented a van so that I was able to have a manicure and pedicure and lunch with them in Sylvan Lake.  A voice device enhancement device given by the ALS Society helped increase the volume of my voice so my grandkids could hear me when I read to them.  An electric wheelchair was also provided by the ALS Society to help me gain some form of independence.  Meals were made by friends and family so my husband Owen, could attend to me.  Faithful friends stayed with me on Thursdays so Owen could play one his favourite games, dominoes!  Friends from church built me a ramp so that I may continue to visit my grandkids in their own home. And rides were provided to spend time with my brothers and sisters at the ALS support group.  I looked forward to those meetings to share and relate my new friends. 

So many things were made possible for me and the above examples were just only a few.  It allowed me to continue to live a life of grace and dignity.  Thanks to the ALS Society for their support and may God richly bless your organization for the support you provided me.’ “

Thank you so much to the Majorie’s family for sharing this beautiful story about Marjorie.

June 10 - Adam Rombough

Today, on day 10 of ALS Awareness Month, we wanted to take some time to share a video and honour our 2018 Edmonton Walk Ambassador, Adam Rombough. Adam’s “A-Bomb” team broke fundraising records and inspired the community to come together to channel home for a future without this disease. This video captures Adam’s Making it Possible story and the inspiring outlook he had.

Thank you so much to the Rombough family for continuing to carry Adam’s legacy and to Hoopla Media for creating this remarkable way to tell Adam’s story.

Link to video: https://www.youtube.com/watch?v=uqtr1bbRNfQ&feature=youtu.be

June 7 - PLS & Kennedy's Group

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Today on day 7 of #MakingItPossible, we are featuring the Calgary PLS & Kennedy’s group. This support group has been around for 15+ years and the group is always fun, sharing so much wisdom and of course, laughter.

 

Here are some comments from the members of the group:

 

Corey  - “Once a month I come to spend time with a very special group of people! This group of people that even through their own adversities are able to resonate a sense of understanding, compassion, love, and acceptance in such a positive, uplifting, and safe environment,” he says.  “The group is something that I look so forward to being a part of. This group of people, truly makes a difference in my world, and all that they touch. Thank you to the ALS Society for bringing us together. Life is a journey, not a destination.”

 

Karen – “Support and understanding from this group helps keep me grounded.”

 

Willie & Sylvia – “The support group meetings are so uplifting and it’s good to know someone has our backs.” “Thank you so much to the ALS Society of Alberta for the walker, it is so helpful in the morning.”

 

Thank you everyone for sharing your thoughts and comments with us for this Making it Possible story.

June 6 - Gail Rauw

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Today we are featuring the inspiring story of Gail Rauw on day 6 of of ALS Awareness Month.

My name is Gail and this is how my story about living with ALS started. I first noticed slurred speech in the fall of 2017. I kept hoping it would disappear but it slowly progressed until I decided to take it up with my GP in June 2018. By July 20, 2018 I was told that I definitely “met the criteria for a diagnosis of ALS”. On an ironic note, I spent 30 years in a research laboratory at the U of A studying brain neurochemistry so I knew exactly where I was headed. With the support of my family, we started to roll with the punches and get on with living. We hurried up and did some travelling while I was still mobile with trips to Japan and California in 2018. In March of this year my two daughters organized a surprise trip to Maui for a vow renewal. Maui has always been one of my favourite holiday destinations and my family often heard me say that I would like to renew my vows on the beach. Twenty nine family and friends travelled to Maui for the special day. We made some great memories. My family and friends have been most supportive. My husband drives me to my Radicava infusions (although I can still drive myself). He has worked the casino fundraiser and will be doing the Edmonton Walk to End ALS with my daughter and granddaughter. My other daughter comes from Victoria for every clinic visit. For her 6th birthday party, my granddaughter asked for donations to the ALS Society instead of birthday presents. and raised over $600! I am fortunate to have the ALS clinic at the U of A. With the help of their speech pathologist and ICAN at the Glenrose, I have banked my speech as well as done some message banking for the future. The ALS Society downloaded the speech app I need to my iPad and I am ready to go when my voice is gone. The ALS Society is a blessing! They have helped me navigate the brutal waters of an ALS diagnosis and focus on what I can do and not on what I can’t!

June 5 - Patricia Latremouille

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Wow! It’s already day 5 of ALS Awareness Month. Today we are featuring Patricia Latremouille.

Patricia was initially diagnosed with PLS in 2013 but in 2014 her diagnosis changed to ALS. Patricia’s message to others living with ALS is “It’s possible to live your life”. Her message is one of creating possibilities, which fits so well into our #MakingItPossible campaign.  Patricia wants others living with ALS to know that it’s possible to continue to have new experiences and find ways to cope and adapt as ALS progresses.

Patricia stays active in the community by regularly travelling across the city to her daughter’s home to spend a day a week with her grandchildren and uses Access Calgary services to make these trips along with other outings in the city. When her family visits from the UK, day trips to the Calgary Zoo, the Calgary Stampede, and Banff Hot Springs have all been on the itinerary! Just a few weeks ago Patricia went camping with her husband and friends in Radium which included a visit to Radium Hot Springs.

She says, for her, having the right equipment such as a power wheelchair makes the change in function less noticeable because it enables her to continue to have new experiences with family and friends.  Patricia regularly attends events supporting the ALS community such as the ALS Support Group and Betty’s Run. She always brings her genuine interest in others, her belief in possibilities, and her smile!

Thank you Patricia, for sharing your experience with us!

June 4 - Sylvia Tensfeldt

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On day four of ALS Awareness Month, Sylvia Tensfeldt shares her inspiration with us.

“Receiving a diagnosis of ALS in any of its many forms has a devastating effect on anyone and everyone in their family.  Suffering its effects each day is much like a death by a thousand cuts.  Each day or week you notice yet another activity, which you have so long enjoyed, has been taken from you.  Without the support of family and the ALS Society, this would be so much worse.  The Society has been instrumental in ensuring that I, and many others, can continue to reside in our homes and lead a somewhat independent life.

                The support of the Society and its members has also shown me that there are talents that have been silenced or taken which I think should be honoured.  Before my limited artistic talents are taken from me, I want to produce something that could perhaps provide the Society with much needed support to continue their good work and to also honour talent that I saw in other members. 

                I am therefore taking the opportunity to highlight a photo taken by a member that resonated with me.  I have designed an embroidery project that I hope to complete by late fall which represents the feeling that while our physical abilities may be silenced, the spirit can still soar.  In return, I hope that people will support the Society by sponsoring this project with pledges.  The entire picture contains approximately 40,000 stitches and my goal is to raise at least $1 per stitch.  There is a link attached where you could pledge amounts to your ability (i.e. 1 cent per ten stitches ($40.00).   Once completed, I will auction the framed work to encourage further funds.  Please help me achieve my goal for project I have called “The Spirit Still Soars”.”

For more information and to donate to Sylvia’s project, click here:  https://www.alsab.ca/news/2019/5/30/stitchin-for-support

 

June 3 - Flawrence Szymanski

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On this third day of Making it Possible - A quote from Flawrence Szymanski.

“It’s hard when you are told you have ALS. I still do my count cross stitch, ceramics, and stain glass. You have to take it one day at a time. I am lucky that I have a great husband, family and friends. I am still able to go for coffee with my friends, go to the movies and play cards. It’s important to do the things you can do.”