Making It Possible Day 11 - Dennis Rommel

My name is Dennis Rommel, and I am humbled and honoured to be chosen as Ambassador for the 2022 Walk Together for ALS event taking place in Edmonton on June 11.
 

I was diagnosed with ALS in December of 2020. I had been experiencing symptoms for three to four years. In September 2017, my mobility became quite challenged, and I went on long-term disability before retiring in the fall of 2019.

After a fall at home, I spent three weeks at the Royal Alexandra Hospital in November 2020 and underwent many tests. I was originally told I may have PLS (Primary Lateral Sclerosis). I had my first appointment at the ALS clinic on December 1, 2020. During that first appointment, my diagnosis was changed to ALS. It came as a huge shock when I first heard those words. December 1 is also my wedding anniversary to my wife, Lorna, of 42 years.

My main support system is my family. They have been great on a daily basis and always available to talk or just listen. I’ve also been connected with a support group where I’ve met so many wonderful people that are going through similar challenges. The ALS Society has given me so much support, as well. The mobility aids I’ve been provided with have improved my daily life significantly.

I’m looking forward to the walk on June 11, and I hope that people will consider supporting the ALS Society of Alberta.  I am extremely grateful for the ALS society and all that they have done for me and my family since my diagnosis.  They have made this extremely difficult time so much easier.  In closing, I have a quote to share from a book I’ve been reading “Perspectives – 17 things I learned about living your best life while battling a terminal illness” by Wayne Thomas:

“One day at a time – that is enough. Do not look back and grieve over the past for it is gone, and do not be troubled about the future, for it has not yet come. Live in the present and make it so beautiful it will be worth remembering. Happiness is a journey, just as life is. Enjoy the ride.”

Making It Possible Day 10 - Judy Lien

After countless appointments and tests, Judy was diagnosed with ALS in September 2019. It was then that Judy and her family discovered the hidden treasure of the ALS Society. Dr. Wendy Johnston, at the ALS Clinic, along with her staff, provided much needed support through in-person Team Meetings and many phone consultations after COVID hit. Whenever a need was mentioned, the ALS Society provided it within days. A porch lift in the garage enabled Judy to go out and join neighbours having coffee in the garage – this continued even when COVID required everything to be locked down. Other equipment from ALS Society included a wheelchair, a lift for getting into bed, a cough assist machine, raised toilet seat and many small items that made life easier.

Judy’s huge “Rachar” family holds a raffle each year at their annual Family Christmas Party with proceeds going to a charity of choice.  In 2019 the proceeds were offered to Judy and her family to assist in her care. Judy, in her typical big-hearted way, insisted the funds instead go directly to the ALS Society. Judy worked for 40 years in a long-term care facility as a Care Aid. She often went in to work after hours to help if they were short staffed. She loved working with the elderly and was affectionately known as “Momma Judy” by the younger staff she so eagerly mentored. Her wacky sense of humour saw her through many tough times, especially during her illness. Judy loved to entertain family and friends, sew, and garden. If you ever left her house hungry, that was your own fault. When she was no longer able to cook, she gave instructions and recipes to her partner, Ed, preparing him for his future without her. Caring for others was Judy’s nature. Right up to her last days, she continued to care for everyone around her, including the Home Care aides who assisted in innumerable ways.

Judy passed away January 22, 2021, in the arms of her loving son with other family close by. Her mischievous grin and the sparkle in her eyes will always be remembered. ALS never dampened her spirits, and in so many ways, she was stronger than those she left behind. The poem below, written by one of Judy’s Home Care aides, shows the true impact she had on others. She is truly missed, and always remembered with a full heart.

 Love: Ed, Todd and Audrey XO

Judy I love you so much today

I want to say that you mentored me from that chair

from that place that you are in right now, everyone of us

came through that door broken and left better than

when we came in. how many people actually do

something to fix broken people, you did, you didn’t care

what it took to fix a broken situation, you did it

anyway, the love I witnessed for your life partner Ed, it

was so amazing to see you hold each other up. I was so

incredibly blessed to have been a part of your

journey, your love for your dear Todd, how he knows you

will always be his safe place, you taught me to be

the most amazing mom and to fight like hell for my kids

always both feet in. Audrey was the keeper of your

heart, you let her know you will always be there when the

world closes off. she can still speak to you and you will

hear her. Judy in an unapologetic way, you held Steve’s

hand on Friday and between the two of you I witnessed

a promise that he will keep your sister’s heart, I love you

my dear friend, so very very much. I thank you for your

years of service that you gave to everyone in your career

as a healthcare aid but as a family member most of all. I

love you for taking me in and teaching me to love and to

be merciful, from that chair in that body you taught me

to love so fiercely, always know that I will be the best

damn HCA because of you.

~ Miriam Hofer

Making It Possible Day 9 - Calgary Clinic Team

The ALS Clinic at South Health Campus, Calgary has been a long standing partner with the community: a committed group of individuals that go above and beyond their role supporting families affected by ALS. Each member of the team has a distinct background and specialty, but they all strive to provide individualized care based on your unique needs. 

In addition to their crucial roles at the Clinic, the team supports and participates in the ALS Society’s fundraising activities and events! Year after year, they participate as a team in Betty’s Run for ALS, because they know that together we can make a difference.

We want to give a heartfelt thank you to the team at the ALS Clinic for making it possible!

Making It Possible Day 8 - Sheldon Watt

Back in March, we were inspired to hear about Sheldon Watt’s community supporting him at a Charity Curling Bonspiel, held by the Carbon and District Agricultural Society and Curling Club. The longtime volunteer and club member had recently been diagnosed with ALS, and friends came out from across the province to support Sheldon, Laurie and the rest of the Watt family. A total of 16 teams took part, and $10,550 was raised for the Watt family to help cover their additional medical and home modification costs.

However the Agricultural Society also made a surprise $3000 donation to the ALS Society of Alberta, knowing the support that we give to families such as the Watts. We wanted to take this opportunity to share Sheldon’s story, while also thanking the Carbon and District Agricultural Society for their amazing spirit and generosity.

Early in 2020, Sheldon Watt noticed that something wasn’t right while working as a partsman. His hands were cramping up and his arms were progressively getting weaker, making it difficult to pull inventory off of the top shelves. By February of 2021, with doctors having advised him to keep an eye on the cramping but without much further assistance, Sheldon retired from his job as he just wasn’t able to perform the role anymore. After pushing his doctor, he finally was sent to Kinesis, who then referred him to the ALS Clinic in South Calgary.

Sheldon was asked at Kinesis if he had any hunches or thoughts as to what the issue might be – and he immediately let them know that he thought it might be ALS, as his dad passed of it in 2003. However, with no other cases every recorded in the family, it did not appear to be a case of familial ALS. After his diagnosis on July 14, 2021, Sheldon underwent genetic testing – first for the two most common genes that cause familial ALS, and then when those were both negative, for a much wider test of less common ones. Again, all negative. From all accounts, this is a very rare case of two genetically unrelated cases of ALS in the same family.

Since receiving their diagnosis, Sheldon and Laurie and their children and grandchildren have adapted and continue to move forward together. Unfortunately, the Class A motorhome that was just purchased and meant to continue their long-standing family tradition of travel and camping was returned to the dealership. That was a hard moment for them. But watching the disease progress and affect his mobility and strength forced the decision.

However, Sheldon is so incredibly positive about some of the other aspects of this change in life that ALS has brought. For example, Laurie is retired and is now his caregiver, and he loves spending so much time with her that they weren’t able to before. He also notes that the ALS Society is always one step ahead with adaptive equipment, sending out recommended items to see if they will be of help, and always ensuring that they have what they need. Sheldon expands on his experience and advice here:

“I am really enjoying the ALS Society Support Group Zoom calls. I get the chance to meet other people fighting the same battle. Everyone is so positive and that sure helps, seeing other people going through it.  It is good to see other people dealing with this and how they are doing. We are all connected by this disease, and seeing people have a positive outlook is great.”

“In addition, my extended family (four sisters and their husbands) have all been a great help, everything from driving me to infusions, to helping move stuff. One of my sisters came out to get an electric scooter from another friend on my behalf. The community support is also incredible, from the Agricultural Society to the Lions Club, to individuals in the area - they support in any way they can.”

“It’s a hard thing to do, to ask for help, when you have been the one helping others through the years. Half is physical, the other half is between the ears. That’s almost as hard as what your body won’t let you do, coming to grips with the disease. You have to be able to set pride aside and ask for help, especially considering our caregivers. Laurie needs help too, so we need to take the help that is offered.”

Thank you Sheldon, Laurie and family for sharing your story for ALS Awareness month. And thank to you to the community of Carbon for your incredible support and generosity as well!

Making It Possible Day 7 - Staff Highlight: Rob Lognon

Rob Lognon, one of our dedicated Client Services Coordinators, has spent 6 years with The ALS Society of Alberta. 6 years is plenty of time to make meaningful, long-lasting connections with our families affected by ALS. Rob, with his hard work and dedication, is no exception! When asked what made him want to join the Society, Rob said “the amazing opportunity to serve people who really need help at a critical moment in their life through an excellent organization.”

He cited his impact on clients and families as a main reason for staying: “I feel like I am able to really make a difference. I’ve also met so many people who have impacted me and taught me a great deal.” A story about one of those people that have impacted Rob’s life helps to encapsulate the tangible benefits of ALS Alberta. “I had a client who had a very active social life. She always looked forward to visiting with friends who would come over any day of the week. Eventually she found it more and more difficult to climb the stairs to her second storey bedroom toward the end of the day. So we installed a stairlift at the request of her occupational therapist. She was elated! She told me that that stairlift gave her at least two extra hours every evening. Before, she would have to gauge her energy and often had to go to bed early so she could make it up safely. But afterwards, she didn’t even have to think about it. She could enjoy her evenings without a second thought.”

“I think we quickly become a piece of solid ground in a seismic time. Through our client services and equipment programs, we are able to help clients with what they need, when they need it.” We owe our stability and reach to our amazing staff, like Rob Lognon.

Making It Possible Day 6 - Angela and Orest Yarmuch

After much investigating, testing, and the nerve conduction studies, we officially received a diagnosis for my husband, Orest, on November 24, 2017.  This is the day we began the ALS journey. We had no idea this could be the cause of Orest’s changing health so we were completely blind-sided with this news.

Orest’s journey began with him being able to still manage doing everything for himself. I have come to realize ALS keeps taking little nibbles of a person and slowly it means needing more and more help. It also means eventually not being able to take part in those things one found so enjoyable; especially, those things enjoyed with the grandchildren – very sad realization. Not being able to visit our families in their homes is sad too since their homes aren’t equipped to handle Orest’s special needs. Now they come to us more often and that’s a good thing too. Dinners together, sleepovers, weekend visits at our home make so much difference for Orest.

I am writing from the perspective of a spouse who is fulltime caregiver. As ALS nibbles away at my husband I have had to come to terms with our new life. Though I am at home most of the time, I find this has become my unexpected blessing/opportunity to spend the time I would like to finish those family scrapbooks along with other hobbies I enjoy. So, I would have to say that is my “Making it Possible” to continue this journey.

Orest, generally, has come to accept his condition & only occasionally gets frustrated that he has become so dependent on me. We have given me the title “ULPN – Unlicensed Practical Nurse”. It gives us a laugh when one is needed. We have also begun saying that we are regularly ‘editing’ how we do things for him. That gives us another little laugh. As his dependence has increased, I find myself saying in my head “How would I want to be treated if this was me?” This, along with my faith, has helped me so many times. Being in the body that ALS is nibbling away at is far more difficult than doing the practical things needed to make a new day as enjoyable as possible. I would say this is Orest’s “Making it Possible”.

We are both so thankful for all the care and support we receive from Homecare and the ALS Society. Recently it became urgent to have a lift installed in the garage. From my call to Homecare, having an assessment, then ALS being here to do the installation, was only a matter of days. Our immediate family members have their concerns but that seems alleviated when they see how quickly Orest’s needs for equipment, etc. are met. Feeling alone in this journey is gone knowing we have this caring support and encouragement behind us.

To all the spousal, family, friend or professional, caregivers out there; be encouraged for you are most certainly Making it Possible for your ALS person to keep going on their ALS journey.

Making It Possible Day 5 - Strings For A Cause: Louis Sousa

Leading up to our dad’s diagnoses we noticed  whatever neurodegenerative disorder he had was progressing rapidly. From June 2020 to May 2021, Louis went through a lot of changes within his body; these included his ability to speak, and his ability to swallow which eventually led to drastic weight loss. In May 2021, Louis made the decision to receive a peg tube to give him the nutrients he needed.

The muscles that were responsible for breathing were becoming compromised. In early 2021, he was introduced to the BIPAP machine. The Bilevel Positive Airway Pressure is a type of ventilator that helps with breathing by pushing air into the lungs opening them up. When it became apparent that he was having a difficult time breathing, on his own, he was urged to use the BIPAP as often as possible. He struggled getting comfortable with it.  The lack of use of the machine made it nearly impossible for his lungs to filter out the carbon dioxide from his body causing some cognitive and behavioural changes. He was introduced to oxygen in July of 2021 (this can be dangerous for ALS patients due to their lungs not filtering properly).

With his continued struggle with the BIPAP and the added oxygen he eventually went into respiratory failure on July 9 of 2021. We thought that was it, we thought that was the day that we would lose him, but thankfully he woke up the next day in the hospital. We were blessed with another 2 months with him. 

We can’t attest to what it’s like to watch someone go through limb onset because our dad never lost his mobility; however,  in his final days he did become too weak to walk and hold himself up. Losing our dad was something we thought we had been preparing for since his diagnosis.  When we lost him we found out that we were nowhere near prepared nor would we ever have been. He was the heart and soul of our family; he was the best man we had ever known. We will miss him dearly until we meet again.

Making it Possible Day 4 - Lori Huolt: Camrose Ambassador

My personal journey began on March 14, 2019. I had just returned home from a lovely trip to New Orleans for Mardi Gras. I had an appointment booked with my neurologist the next day. I was still in holiday mode and on top of the world. As we did my tests I was excited to shares stories about my vacation and a new granddaughter. Life was good.

Then I received the news... you have ALS. At first, I was numb then I realized this was my new reality. As I shared my news with family and friends I felt a strong feeling of love and support. "This is now going to knock me down without a fight," I thought. I am going to live life to the fullest every day.

At first, I was having slurred speech and losing the use of my right hand. In 2021, 2 1/2 years later, I have lost my speech and have weakened arms and legs. My determination keeps me going. I was fortunate to be selected 1 year ago to participate in a promising clinical study that reduces progression by up to 33%. I believe I can beat the odds of the 2 to 5-year life expectancy.

I am so blessed to have a wonderful family. My husband of 34 years is by my side, his love and support are unbelievable, the kind of love every girl dreams of. My two grown sons and daughter-in-laws are in constant contact with me or see me every day and always followed by "I love you". They always make me laugh so hard I cry. Then there are my 2 granddaughters. My favorite words are "I want to go to Gamma's house", they are my everything.

My friends are always there for me, texting to check up on me or just to send me their love. Sooo... that is why my life is good even as I battle this horrible disease. As most of you know there is no cure or ALS at this time as we continue to raise awareness and help fundraise research for this very underfunded disease, I hope one day we find the cure we so desperately need.

2022 UPDATE:

I have been blessed to add 1 year to my personal journey. So much has changed…I have lost speech but have gained a communication device. I can no longer walk but have gained a wheelchair and a van to go wherever I want. I have lost the use of my hands but have gained the helping hands of my loving husband, family and friends. It’s not what we lose in life but what we can do to make our lives better!

My Motto is and always will be to stay strong, stay positive and never ever take anything for granted. We are all blessed.

Making It Possible Day 3 - ALS Coffee Group North

It’s 1:30pm on the second Friday of the month. One by one little boxes appear on the screen, with their names in the bottom left corner, giving the only clue to who’s behind the darkness that precedes their reveal. For the regulars this group is kind of a second family. I can sense a slight feeling of anticipation to see who will actually appear on the Zoom screen, because doctor’s appointments, a poor sleep the night before, or the general busyness of living with ALS make it hard to always show up. In short order we have our answer. There are 8 clients today. Zoom has been a necessary transition because of the pandemic, but it’s also afforded people the ability to connect with others across Northern Alberta. Vermillion… Barrhead… Edmonton… St. Albert… Morinville.

There’s Nancy in her kitchen… then Colleen with stylish wallpaper as her backdrop... Richard with the safe blurred background so we can’t see how messy his kitchen is. Jim comes on and in hushed tones, says goodbye to his wife who is on her way out the door. She leaves the frame, but then does an about face and leans into the picture with a big hello to the group. There’s a refrain of hellos! Dennis and Lorne are regulars. Lorne is there with his BiPAP on, making it a little hard for him to talk, but not to listen. Dennis, our 2022 Edmonton Walk Ambassador, is leaning in, trying to read the tiny lettering of everyone’s name, welcoming everybody by name. Morgan shows up, a little reserved, since it’s only his second time, but that quickly fades as the group draws him in. The always affable Danny comes last, rounding out the group with his wit and smile, bringing a boost of energy to the group.

After the round of greetings subsides someone asks where so-and-so is? “I think they said they will be vacationing in BC this week,” Colleen says. The regulars know each other. And the new people are not strangers for long, just family that haven’t met yet. It’s a community of kindred spirits that have gathered from across the province courtesy of technology. A group of individuals that are as different, as they are the same. That likely never would have crossed paths. Save they all share one common, terrible thing: an ALS diagnosis. And that has forged a bond not often seen.

We take turns going around the group, sharing our updates from the month. One person shares that for some reason every time he brushes his teeth, he cries. Someone chimes in, “me too!” The rest nod in solidarity. A discussion around mental health ensues. “Maybe we should get a speaker to come in to talk about it?” “Great idea! I see a counselor I was given through the ALS Clinic who would be perfect!” Several others concur as they have seen the same counselor.

One of the women shares how when her hands aren’t working right, she is driven in circles, “is this ALS? Or arthritis? Or is it something else?” There’s a chorus of agreement. “It happens all the time!” Richard says he feels like a dog chasing his tail, “Is it the meds? ALS? Something I ate?”

Someone shares they are thinking about buying an accessible van and asks for advice. Even though they are still mobile, they want to be prepared. Jim gently suggests that maybe they’re “overthinking it.” It’s so hard to prepare when ALS doesn’t follow a set course and goes where it goes. Maybe you’ll never need it? Morgan remarks that ALS is so different for everybody. Lorne offers what worked in his situation. Nancy empathizes, “If it’s any consolation, my mind always jumps ahead.” It’s hard not to.

One of the guys asks if swollen feet are common and that leads to a range of helpful, and some amusing remedies, thrown into the pot of communal wisdom. He takes notes and promises to report back next meeting on what worked.

Danny says, “this is what makes this group special, everyone’s eyes are different.” They see solutions that you might not see. Jim says that after he was diagnosed, he felt like “a bug swimming in a bowl of water.” Looking for anything to grab onto, but not able to climb out. “This group is fantastic,” he says, “it helped me take it one day at time!” Richard says this group has become a safe place. “This group is a second family, where you can talk about things you might not want to talk about with you own family.”

Time flies and before you know it, it’s time to say goodbye. Farewells are said and one by one the screens disappear. This family of ALS warriors have helped each other make it possible to carry on and fight another day.

Making It Possible Day 2 - Bill and Angel Redisky

Bill is a carpenter by trade and has always loved the outdoors. Fishing, camping and travelling have always been high on his list. We spent a ton of weekends with our four kids quadding in the mountains or fishing the riverbanks.  Bill and I started travelling in 2005 and have always tried to get a trip in every year. 

Bill was diagnosed April 6,2020 - right at the beginning of Covid. The time in his life when it's so important to spend time with family and do everything on " your bucket list". We had planned to renew our wedding vows that September and go to Hawaii for a second honeymoon, but Covid SHUT IT DOWN. As ALS progressed - as did Covid .

We became very discouraged. By the summer of 2021, ALS took Bill’s ability to walk, feed himself or do any of his daily care needs. It was then that we decided that no matter what, we had to get it done. Time was not on our side. 

After 35 years of marriage we renewed our wedding vows on July 3,2021. The theme of the wedding was “Moments and Memories". We knew we wouldn't be able to rebook the condo in Hawaii as it was not wheelchair accessible, so we started looking into every all-inclusive resort in Mexico, a place that we have loved for years. 

We faced so many hurdles with equipment, timing, and treatments needing to be done, but it finally all came together in September of 2021. With help from family, friends and the ALS Society we were set to go. 

The trip was the best gift we could have asked for, as it gave us both a chance to have some normalcy back in our lives. We spent our days at the pool where Bill could stand alone for the first time in months with no support. We dressed up for dinner every night. We smelled more flowers and enjoyed more sunrises than ever before. As stressful and as hard as it was to get it all put together it was the best thing we could have done. Bill and I got to step back and " be ok" even if it was for just a little while. It's all about the Moments & Memories…

Angel Redisky

Making It Possible Day 1 - ALS Awareness Month Feature

To kick off ALS Awareness Month and our Making it Possible series, we are excited to share with you a segment on the ALS Society of Alberta done by Global Edmonton’s Trending program.

This video features the stories of three of our families – the Williams family, the Rommel family, and the Spelliscy family. 

Please take a few moments to watch this video and share with your friends and family. And thank you to the Global Edmonton team for taking the time to learn about ALS and raise awareness about the disease. 

https://youtu.be/dE3FalKaLFo

Making it Possible Day 29 - Trevor Bradshaw

My name is Trevor Bradshaw and I am proud to be called the Ambassador for the Red Deer Walk for ALS for 2021.

I was diagnosed with ALS in July 2019, but looking back, the symptoms presented themselves much earlier. I was riding my beloved Triumph motorcycle when a deer hit me. My left leg became numb. Thinking it was a result of the accident and hard work my back had endured over the years, we thought it was a pinched nerve. Then my energy level and physical strength became very weak. I couldn’t accomplish what I used o during a work day. It took one more year before my diagnosis through the ALS Clinic in Calgary. I was 62 years old.

I was a heavy duty mechanic with Finning for 14 years then started a construction company and gravel pit. The work was very physical but I enjoyed it immensely. Customers became lifelong friends. After the diagnosis, I began selling off equipment and focused on spending time with my family and friends.

Before COVID, I got to travel to Arizona, doing a motorcycle trip with friends. Took my family to Nova Scotia and an incredible trip to Iceland. Exploring Banff, Jasper and Cypress Hills has also allowed family time. But just enjoying coffee or happy hour with friends and family is equally important to me.

I have met this illness with a sense of humour, courage and determination. Having the support of the ALS Society and Clinic has been exceptional. You only have to mention an issue, and it is quickly resolved. They have installed lifts in our home and various medical equipment which will allow me to stay in our home longer.

With this support, I have been able to spend my energy on living life to the fullest and what means the most to me. Please support this worthwhile cause to help end ALS.

Making it Possible Day 28 - Lorne McCree

My ALS limb onset diagnosis came in June 2019. Symptoms started in the early spring of 2018. During my regular gym exercising my weightlifting protocol was subtly becoming more difficult, particularly exercises involving my legs. In the early summer of 2018 while speed walking on the gym track, suddenly my right foot was not working properly. Continuing that exercise in the normal fashion was not possible. At the time I blamed it on my new shoes.

During the course of 2018 balance issues became a problem and my right leg was not allowing me to walk normally. It became difficult using stairs and to stand up without leaning against a wall or using handrails.

We lived in a two storey house and decided to move to a bungalow. The move was made in September 2019.

As things progressed my family doctor did not have a diagnosis. She referred me to a neurologist. In January 2019 the neurologist performed nerve conduction tests, the results of which were normal. She arranged for an MRI which was done in May 2019. By this time my ability to walk needed a cane. More testing was done and then referral to the Kaye Clinic was made. My appointment was in June 2019. More nerve conduction testing was done and the result was the diagnosis of ALS. This was the beginning of my relationship with the neurologist and the Kaye Clinic. It was also at this point information about the ALS society was given to me. My registration with the society happened in July.

My wife and I have six grandchildren, two in Fort McMurray, two in Grande Prairie, and two in Saskatoon. It really goes without saying what our passion is, but we love our grandchildren. In order to see our grandchildren on a regular basis we traveled a lot, but that is what we liked to do. Also another passion of ours was visiting the Temple Garden Spa in Moose Jaw, Sask every year, twice a year .

My other passion was my work. My love of airplanes had me working at the airport of a diamond mine in the NWT. My primary role was directing aircraft landing at and taking off from the airport. Sometimes it could get busy because getting in and out the mine could only be done by air. There are no roads.

My diagnosis resulted in my last tour of duty at the mine in 2019. Our last visits to see our grandchildren, and visit to the Spa, were in the early winter of 2020. By this time climbing stairs and long drives were a challenge because of a lack of energy and poor mobility. Now our grandchildren visit us, unfortunately hampered by Covid, but they do the travelling now.

My new passion is playing scrabble on facebook with my mom, my sisters, my brother, sister-in-law, and other friends. Another passion is Facetime with my grandchildren when they are not visiting.

My wife has become my primary caregiver. Her role has become progressively more work. My oldest son initially moved to Edmonton to provide assistance. My three other sons are very supportive and as time has gone on they visit regularly to help out. My brother built a wheel chair ramp in my garage which now allows me to get out of the house because using stairs is not a possibility any more.

Support from the ALS Society has been phenomenal. The support provided has been beyond my expectations. They are always willing to discuss my issues and always ready to help resolve my issues. They have provided every piece of equipment needed to help me live my best. Wheelchair is my exclusive method of mobility now. The ALS society arranged for ceiling lift tracks installed in my living room, bathroom, and bedroom in order to get in and out of the wheelchair.

Another important thing they do is contact me regularly to see how I’m doing and offer more help if it’s needed. It has been outstanding service provided by outstanding and caring people. Something very special about them is the coordination of `coffee group’ meetings on zoom. This has allowed me to make contact with other people with the same condition. This is a positive aspect for my life and my deepest and sincerest thanks go out to the society.

Support also comes from AHS, AADL, and the Kaye Clinic. In early 2020 breathing while lying on my back was a challenge. The clinic arranged for me to get a BiPAP. The Kaye Clinic also stays in contact with me and offer any help if needed.

My own research into ALS led me to join two facebook groups, Whole body healing for ALS and ALS Natural Healing (Holistic) and an international online organization, HealingALS.org. This research also led me to develop a treatment plan. This plan includes a supplement protocol involving numerous supplements, a program involving acupuncture, physiotherapy, massage therapy, iv therapy, removing mercury fillings from my teeth and removing teeth that had root canals.

There is no way of knowing for sure if any of the plan has helped but it worth trying at least until the medical community, with their now exhaustive research around the world, can find a cure. Riluzole was part of my treatment plan for a year but uncomfortable side effects forced me to stop.

At the beginning of my diagnosis I was involved in a drug trial. The drug was pimozide.

My plan for the future is to never give up! My attitude is positive and I surround myself with positive people. Stress reduction is very important as well as elimination of anger.

I recently received this quote from a friend of mine. It is so appropriate.

“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.” – Thomas Edison

Making it Possible Day 25 - Sylvia Tensfeldt

"They" say that if life gives you lemons, make lemonade. Sometimes life has felt like I have been required to make lemonade, lemon chiffon pie, lemon pound cake, lemon squares ... When the diagnosis of ALS was received, it felt as if a lemon landslide had occurred and I had run out of inventive ideas to deal with the problem and frankly, I was sick of lemons. Unfortunately, the lemons had landed and there was no alternative but to accept the situation and know that there would be more lemons to deal with in the future. As a single mother and sole proprietor, having always done things by my own handiwork, I thought I might have to deal with this all on my own

and the thought was daunting.

But as I stepped back from the thoughts that this was all bad, I did become aware that you can rely on others in your "universe" who would lend a hand, even if it was only to help consume some of the lemonade, lemon pies, lemon cakes etc.

They could even suggest more uses for lemons or come play with you in the lemons. Who thought it possible? The truth is, that it does take a village to help navigate all the channels that come with any difficult diagnosis because we do not have all the answers or recipes ourselves.

My stitching has always been a meditative process for me and I wished to try to give back in some way to the Society who has been there to help. I have found as this particular project has progressed, that I have more helpers out there than even I have appreciated and I hope upon its completion their generosity will have been properly honoured and that whomsoever takes ownership of the project will see that it takes many to make it work for all of us. Afterall, could

you imagine a world without lemons? Think of the bland seafood, the boring desserts and the unrefreshed atmosphere ...

- Sylvia

Sylvia has graciously started her own very successful fundraiser for the ALS Society of Alberta, “It Takes A Village”. So far she has raised just under $9000 (and counting…)

Here’s how it works:

Visit : https://secure.e2rm.com/registrant/startup.aspx?eventid=349736

For a donation of $250 + you can choose one of the options and have your name/initials or company name/initials added into the art piece

Choose a building/structure from “Sylvia’s List”

All donations, no matter the amount are accepted (and Sylvia is VERY thankful)

There’s only a few spots left! Once the piece is finished, we will be auctioning off the art. All proceeds will go to the ALS Society of Alberta to help families living with or affected by ALS right here in Alberta.

Making it Possible Day 24 - Ariella Mihova

My mom, Gail Rauw, was diagnosed with ALS in July of 2018. She (“Nana”) had 6 beautiful grandchildren, whom she cherished. One of her granddaughters (my daughter), Ariella, was inspired to make a difference by raising both awareness and money for the ALS society. For Ariella’s 6th birthday (March 2019), she asked for donations in place of birthday gifts and raised over $630. For Ariella’s 8th birthday (March of this year), she once again asked for donations, and celebrated with a virtual painting party with friends (her Nana was a talented painter). Sadly, her Nana passed away that day. Ariella continued her advocacy mission, and reached out to the ALS society to support her endeavour. They quickly provided books, balloons, and bracelets, which Ariella brought to her class and distributed. She also started an “ALS club” for any classmates who wanted to know more about ALS. Ariella’s love for her Nana shines bright in many aspects of her life, and she is motivated to spread awareness of ALS.

My mom was an absolutely amazing grandma, mother, wife and friend. We miss her tremendously. We are so grateful for the support we received from the ALS society throughout her illness, as well as the support we continue to receive.

Making it Possible Day 23 - Belle DeZutter

Belle DeZutter – A Digital Story by Mike Lang

Build Community. Discover Wisdom. Inspire Change.

The 2021 Edmonton Walk To End ALS Ambassador let's us in on how her ALS story began, how she has dealt with the diagnosis, and her life since, all through the eyes of our talented friend, Mike Lang.

”Mike has worked with hundreds of patients, family members and health care providers, from across all injury and illness groups, to help them create short 3 min Digital Stories of their experiences.”

Please take a moment to watch to Belle’s Story.

#MIP #MakingItPossible

https://youtu.be/b9hGoFnwZBA

Making it Possible Day 22 - Friends of Southpark Cove

One of our lovely clients, Christine, was able to be a part of a beautiful community in Stony Plain, Alberta. This community, Southpark Cove, truly embraced Christine during her illness by surrounding her with positivity, fun and comfort.

Recently, our dear friend Christine passed away. The staff of Southpark Cove immediately reached out to us, looking for a way to honour her life. Staff, tenets, family and friends all came together to raise money for the ALS Society of Alberta in her memory, but that wasn’t all. They asked the Society to create a framed memorial piece for the entertainment room of their complex, the same room Christine spent so many days enjoying the company of everyone at Southpark Cove.

Christy was able to visit Southpark Cove just last week to accept the donation and drop off the new memorial.

Thank you Southpark Cove for providing such a positive environment and for being a wonderful group of friends.

Making it Possible Day 21 - Tanis Meginbir: Devil's Head Coffee

Growing up with my brother, Chad, was a great adventure. He would push the limits on activities, make anyone smile with his goofy humor or be a shoulder to cry on. He had a heart of gold and would make lasting memories with anyone he met.

My parents would joke that on holidays the first thing we needed to do was find out where the nearest hospital was. There was always a good chance we would be spending time there due to Chad’s love of exploration and how “clumsy” he was.

As we grew older, Chad was my biggest fan. Being 8 years apart, he was my support system, a true “big brother” (especially being 6’4”) and was always there to make me smile or calm my nerves during uncertain times. In 2017 my husband, Chris, and I took a risk and decided to open our own business, Devil’s Head Coffee Roasters Ltd. Chad and his wife Pam were always there for us to test ideas with; problem solve and were interested and supportive in our new venture, even though he did not like coffee.

When Chad shared his ALS diagnosis to us, it was a shock. I still remember the day sitting on my couch in 2018 and listening to the news while holding my young son. Chad was strong, but I could see he was still processing the news himself. But in typical Chad fashion he made us smile, laugh, and promise to live life to the fullest with him. We agreed to be adventurous, make every moment count and spend as much time together as we could. We made lasting memories that I will always remember. Chad will continue to inspire me throughout my life to always find the joy, even during difficult times.

Making It Possible Day 20 - Allan Simon

Me and My ALS

My first inkling that something was wrong was in the fall of 2018. My voice had become gravelly and I seemed to constantly have phlegm in my mouth and throat. Then in the winter I began to limp slightly although I had no pain. I called my family doctor who suspected I might have suffered a slight stroke. So I went to the emergency department at Foothills; they quickly ruled out stroke and called in a neurologist. Right away, I knew. Of course the neurologists are very careful before issuing a diagnosis – they finally did so in August – but I knew.

Since then, my disease has followed the predictable path: as I write this in April of 2021, I have completely lost the ability to speak. I can drag myself a few steps with the help of a walker, but I have fallen a few times. I have trouble chewing and swallowing my food. My breathing and my upper body functions have so far been only slightly affected, but of course I realize it's a matter of when, not if, these too will fail me.

Reading this, you might think that I am miserable. In fact I'm not. I am 75 years old, and I have carried the ALS gene all my life, without knowing. For many people with this gene, the disease manifests itself at a much younger age. If my fairy godmother had said to me when I was 50 “Buddy, I'm sorry but you have ALS. But, you know what, I'll give you another 25 years so you can see your children grow up and establish their own families and careers, so you can enjoy your grandchildren,so you can travel the world with your wife who you love so much, so you can find enjoyment and recognition in all aspects of your life, how about it?” I would have gratefully accepted!

I am actually lucky that the covid restrictions have coincided with my illness: I can participate in the meetings of my fraternal organization and I can play duplicate bridge with my friends because these happen online. If there were no covid, I would be cut off from these activities.

My condition has been immeasurably alleviated by the support of my wife Meredith, my children Nycole and Roland and my granddaughters Jillian and Jessica. I would be remiss if I didn't especially thank the ALS Society of Alberta and the Alberta Home Care program. They have both been amazing, not only supplying me with things like a wheelchair, a walker, a transfer bench, an iPad with the “Predictable” program and many other aids, but doing so in a friendly and unbureaucratic manner – they never let me feel like I'm imposing, although I must be!

One photograph shows Meredith, me, Mikael Backlund, Roland and his partner Allison at a Flames game. I am very grateful to Mikael for making this possible,we had a great time. The other has me on Beechey Island in Nunavut, a stopover on our cruise through the Northwest Passage, which had always been a dream of mine.

Making it Possible Day 19 - KIDCO

In 2007, Ken Renton from Kidco Construction responded to the need for support of families in Alberta affected by ALS. Mr. Renton immediately got behind Betty’s Run for ALS.

Every year since then, the Renton family has quietly supported the cause in addition to many charities. They have given more than $150,000 to support families living with ALS and fund much needed research here in Alberta.

Even after Mr. Renton retired, his daughter Danielle continued to support the cause and participate in the Run. They invite their entire staff to participate on the day of Betty’s Run.

The Renton family represent what community is about in Calgary. Giving back to the community has always been Kidco’s philosophy.

Thank you to Kidco for making is possible for Albertans affected by ALS.