Making it Possible Day 18 - Board of Directors

Today for our Making it Possible series, we would like to recognize the dedicated members of the ALS Society of Alberta Board of Directors.

Thank you to the ALS Society of Alberta Board of Directors, for leading the Society to provide the best possible supports for our families across Alberta and fund ground-breaking ALS research.

Our incredible leaders, Nancy Lyzaniwski, Cathy Martin, Gord Banting, Tara Pentney, Heather Haddow, Jim Robinson, Kimberly Howard and Pamela Keenan.

This incredible group of leaders led our Society through the last year, dealing with a pandemic that shook the world. Their constant and unwavering support was there to ensure we continued to make each day the best possible day for our families affected by ALS. All having been personally touched by ALS, their commitment to the cause is unwavering.

We are so thankful for their service – in the words of Margaret Mead…

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.

Making It Possible Day 17 - Bernie Ward

Bernie Ward was diagnosed with Kennedy’s Disease in 2006, after noticing changes in his speech. The ALS Society and the support groups have been a great support for Bernie, especially during Covid with the move to virtual meetings, allowing him to participate more regularly. Bernie has shared his Making it Possible story via video, please watch it here.

https://www.youtube.com/watch?v=mTjFBT8cFnE

Making It Possible Day 16 - Norma & Wayne Erickson

Wayne Erickson was diagnosed with ALS in 2012. During his diagnosis Wayne was known to share his personal experiences with those around him, teaching students and care staff about ALS and the needs of an ALS patient. He was the kind of person who always wanted to help, he was always able to be open and honest about his situation and his needs, making things very easy for Wayne’s caregivers to help him. If you asked any of the caretakers that worked with Wayne over the years to describe him, you would hear the same sentiment, “never grumpy, always the first to offer a solution”.

Wayne was a gifted artist, and photography is what he loved to do. If you were to take a look around the home of Wayne and his wife (Norma Erickson), you would see an array of beautiful wildlife photography, proudly framed and displayed on the walls for everyone to enjoy. One photo in particular, the snowy owl, became a bit of a symbol for Wayne and for the ALS Society of Alberta. The snowy owl represents freedom and flying high, something our families can surely relate too.

Norma, is also an artist and dedicated to her work. Norma has been quilting for over 35 years and has been making beautiful quilts for the WALKS to End ALS since 2015. In 2019 after hours and hours of hard work, the Eagle quilt was born, this amazing quilt was inspired by Wayne. Norma continues to keep Wayne’s legacy alive with her love of quilting. Each year, she creates a beautiful new piece for us during event season, to raise money for people living with and affected by ALS. Earlier this month, we were lucky enough to raffle off not just one, but TWO of Norma’s beautiful creations, aptly named, “The Twins”.

Making It Possible Day 15 - Edana Gust

My name is Edana Gust.  When I was diagnosed with ALS on April 1, 2019, I told the doctor that it was April Fool’s Day and I was hoping he was joking.  He assured me it was no joke.  My husband Doug and I were just numb from the diagnosis.  I’ll provide a little background on how we arrived at the diagnosis.  A year or so earlier, I had noticed some discomfort with my right knee, and we started a process to find out what was happening.  The consensus was that it was osteoarthritis, but nothing seemed to be helping and my mobility and balance were beginning to suffer.  In December 2018, my voice changed and there was concern that perhaps I had suffered a stroke.  All the tests for heart conditions came back negative so I was referred to a neurologist.  After a CT scan and MRI, I was scheduled for an EMG on April 1 and the diagnosis of ALS was made. 

The next month can be described as a grieving process where we wrestled with the reality of the diagnosis and came to grips with what the future might hold for us.  Life is a journey, we don’t get to pick what’s placed in path, but we can choose how respond to the unexpected.  Fortunately I didn’t have to wait long until I was able to attend my first ALS Clinic where I was able to meet the amazing resources dedicated to supporting those living with ALS.  I met Michelle with the ALS Society shortly thereafter Rob came for a visit.

We were living in a two-story house and owned a bungalow style condominium that we had as a rental property.  We began plans to renovate the condo and make it “wheelchair accessible”.  What a blessing to eliminate stairs and have everything on one level!  The ALS society provided a porch lift, a scooter, and a walker, so I had my mobility back!

My speech continued to deteriorate, and I met the speech therapist with ACETS to began learning the fine points on use of speech devices.  I now have my speech device and know how to teach it my favorite phrases.

I have been blessed with incredible support from friends and family and we keep in touch through zoom and “socially distanced” visits.  I am thankful that I can continue to knit and crochet.  In 2020, I set a goal of knitting 20+ sets of toques and scarves for my brother to give as Christmas gifts.  I started them in July and completed them by September.  I then began a quest to complete an afghan for each of my nieces and nephews.  The first 20 were complete in time for Christmas.  The next twelve are now complete.  In the midst of the afghan project, I did 7 baby blankets for the new additions to the family, and 40 preemie hats.

I am grateful for the ALS Society and the support they continue to provide.  It was wonderful to be asked to share my story.

Making It Possible Day 14 - Stephen Fairley

Stephen and Sharon

One morning in November 2019 we were having coffee in bed and Stephen did not feel up to going to a retiree’s luncheon so I found a picture of a puppy that was available and we agreed to drive to Red Deer and interview this pup.  Little did we know this was the onset of Stephen’s ALS and the beginning of a love affair with little Patch.  Although Stephen’s breathing continued to deteriorate finally resulting in an ICU admission December 26 and eventual diagnosis of respiratory onset ALS in March 2020 Patch provided such joy to our lives.  Stephen smiled more than in our previous 35 years of marriage.  Since then, the ALS Clinic and the ALS Society, and in particular, Michelle, have provided such unwavering positivity and support.  Of course COVID has impacted everyone but it terrified us with Stephen’s difficulty breathing.  The ALS Society providing Stephen with a motorized scooter enabled him to go on walks with Patch and I.  This way we were able to still greet neighbours and enjoy the outdoors.  Since then, we have been incredibly grateful for all of the various assistive aids provided by the ALS Society that have enabled Stephen to continue living at home.  We have also found lots of pleasure in reading the Louise Penny Inspector Gamashe series aloud.  It is delightful to be reading a series located in Canada by such an extraordinary author.

Making it Possible Day 10 - Sea Change Brewing Co. Releases Adam's Pale Ale

This is an incredibly exciting day, as we celebrate the life and legacy of Adam Rombough with this amazing new partnership with Sea Change Brewing Co. in Edmonton. The family and friends of Adam Rombough continue to Make Things Possible, with a new partnership that coincides with ALS Awareness Month. Prime Minister Justin Trudeau concurs, including his thoughts below.

June 10th - Sea Change Brewing Co. has partnered with the ALS Society of Alberta to raise awareness and funds for Amyotrophic Lateral Sclerosis (ALS), in memory of Edmonton community member, Adam Rombough.

After being diagnosed with ALS in 2017, Rombough dedicated his final 14 months to fundraising and generating awareness for the disease, before passing away on May 8th, 2018 at the age of 34. Throughout his battle with ALS, Rombough maintained his larger-than-life attitude, and can be remembered saying “I’m not dying slowly, I’m living quickly.”

To carry on his legacy, and continue advocating for ALS, Sea Change Brewing Co. has crafted their new Adam’s Pale Ale, which was released today, June 10th. For every four-pack sold, the brewery will donate $1 to the ALS Society of Alberta. The brewery is challenging everyone to post a photo or video of themselves cracking open the Adam’s Pale Ale, and to use the hashtag #OneOnAdam to spread awareness.

“June is ALS awareness month, a time to reflect on and reaffirm our support for those individuals who have been diagnosed with this disease,” said Canada’s Prime Minister, Justin Trudeau in a letter stating his support for the campaign. “This important campaign is named in honour of Adam Rombough who died from ALS. His fight with the disease and kindness towards others serves as an inspiration to our nation. Through Adam’s legacy, we are able to come together and support those with ALS while honouring his life.”

In addition to the Prime Minister, keep an eye on our social media channels today for other notable community members that have indicated their support and will be using the social media hashtag #OneonAdam.

Adam’s Pale Ale can be purchased at select liquor stores across Alberta.

Learn more on our website at alsab.ca/seachange!

“Adam was one of my oldest and closest friends. His optimism and zest for life was completely infectious. The fact ALS can strike anyone – regardless of who they are, and there is no way to prolong their life once it does, is really scary. I know Adam would be absolutely amazed that his face is on a beer can, I don’t think he’d quite believe it. Through this partnership, we’re encouraging people to have #OneOnAdam and to help spread awareness of this awful disease.” - Kris Andreychuk

“When Kris came to us with the idea for this partnership, there was no hesitation. Adam was such a huge part of the Edmonton community, and touched so many lives, this is the least we could do. We crafted the Adam’s Pale Ale truly with Adam in mind. It’s super flavourful and approachable – just like him. We hope to make a difference in the search for a cure for ALS – every little bit counts.” - Pete Nguyen, Sea Change Brewery

“We were lucky enough to meet Adam in 2017, and in the short time we knew him, he certainly left his big heart in those he touched. His legacy continues to live on with the Adam’s Pale Ale fundraising campaign, and we are so appreciative of the support of Kris Andreychuk, and Pete Nguyen of Sea Change Brewing Co., and all of Adam’s family and friends for making this a reality. We hope “Adam’s Pale Ale” provides a reminder of how Adam lived life to the fullest, and helps make your day a memorable one. “ - Karen Caughey, ALS Society of Alberta Executive Director

Making It Possible Day 9 - Lori Huolt

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. Today 2 1/2 years later, I have now 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.

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 8 - Wayne Thomas

In 2015, in my early 40’s, while running with a friend, I noticed weakness in my left foot.  Over the next months and years after the weakness continued to progress and after several misdiagnoses, I was given the life-changing diagnosis in 2017 that I had Amyotrophic Lateral Sclerosis (aka ‘ALS’, Motor Neuron Disease or Lou Gehrig’s Disease).  

After the initial shock, me and my wife Joanna, have been proactive in fighting this illness and remaining strong.  Towards the end of 2017, we flew to Japan and spent five weeks receiving Radicava infusions and continued on with the treatment when I returned home for nearly two years. I also participated in a voluntary clinical study for Pimozide and also another for Reldesemtiv. While down in California, I also donated my blood for another clinical study so that the researchers could check for any biomarkers that may lead them to future findings for other ALS patients. Obviously, as are many ALS patients, I am interested in new research. Nurown and AMX-0035, for instance, have indicated initial interesting findings in their Phase 3 clinical studies.

With the support and prompting of several friends and colleagues, I have chosen to leave a legacy by writing a book to document my journey with ALS. I feel there is an opportunity to not only raise awareness of, and funds to fight, this horrible disease but also provide a bit of humor and hope for people to help them live their best lives as they face their own struggles in life. I knew going into this project, I would not be looking to make money, so at least 70% of the proceeds are going directly to the ALS Society of Alberta. The remaining 30% will simply cover publishing and printing costs. It is called: "PERSPECTIVES: 17 Things I Learned About Living Your Best Life While Battling a Terminal Illness" https://www.amazon.com/dp/0228845505

The ALS Society of Alberta has been fantastic to me and my wife. For every dollar that they raise, 60% goes directly to ALS patients and their families for much-needed equipment and the remaining 40% goes to the National ALS Society for research that is used to help find effective therapies and hopefully a cure that will benefit all ALS Fighters around the world. They have supported us with equipment as we needed it and in addition, all the people that work there have been an amazing emotional support to us as well.

In summary, 2020 was a difficult year for the world. As an ALS patient, we often feel isolated already due to our disability. When there is a global pandemic, many of us were trapped inside for over a year away from our friends and loved ones and many still are. After I was diagnosed my wife and I made the decision to purchase a second home in Palm Desert, California. We made that decision so that we could escape the snow, ice and cold that is a big part of Calgary's winters and with Covid-19 we were even more grateful. Last year in the fall, we flew down for the second year in a row and enjoyed warmer temperatures where I could get out and experience vitamin D. Our plan, assuming my health continues to hold up, would be for us to head down again later in this year and spend another few months in warmth (and sea level which helps my weakened breathing). This not only gives us something to look forward to, but also provides us a good mental health experience as we continue to make memories and live a life of gratitude.

Making It Possible Day 7 - Kari Evans

Walk With Kari to End ALS

The “Walk with Kari to end ALS” was created by the many friends and family of Kari

Evans in her memory. Kari was a one of a kind lady who was admired by everyone

around her. She was a wife to her husband Dale and mother to her two kids Shanelle

and Bryson, as well as a beloved friend by many.

In short, Kari was sunshine. She was never seen without a smile or a skip in her step.

She was known for her loud contagious laugh and her happy personality. She enjoyed

life and all the little things. A couple of her favourite things included going for a run and

having coffee on her deck in the sunshine.

Kari was diagnosed on August 12, 2019. Kari was a runner. She loved to run as it was

one of her favourite pastimes. She had noticed weakness in her leg that kept getting

worse. The diagnosis hit hard as she had just recently lost her mom to the same battle

just a couple months previous. She had just watched it all take place and then with her

own diagnosis, watched her world come crumbling down. This was the point in time

when we discovered that we are dealing with Familial ALS. This type runs in family

genes. First it was Kari’s Grandmother, then her mom and now her. As hard as it was for

her and for everyone around her discovering that diagnosis, she had hope. Shortly after

her diagnosis she was enrolled in a clinical trial that took place in Montreal. Kari

constantly looked for the positive side of every situation and kept her spirits as high as

possible. She was the person that helped the people around her look for the brighter

side to every situation and knew that everything happens for a reason. She loved all the

doctors, nurses and researchers that she came across, and they loved Kari. Travelling

to Montreal every couple weeks wasn't easy. It especially became hard when Covid hit

and travelling was limited. Soon enough Edmonton opened a clinic where she could get

her treatments. Eventually those trips got harder and Kari’s mobility became the limiting

factor for her to be able to travel to get the treatments. Kari passed away on November

14, 2020 with family and friends by her side.

Kari’s community is determined to not let her legacy die so this summer, with the help of

the ALS Society of ALberta, they have created the “Walk with Kari to End ALS”

fundraiser where we can raise money and awareness to help get one step closer to

finding a cure. It is also a way to carry on a tradition to help her keep fighting from

heaven and have a day we all come together to remember our amazing friend.

Making It Possible Day 5 - Jenna Doll

Jenna’s Story … continued part 6

What Life is Like Now.

Well, it has been a ride and I am thankful to everyone who has joined in on my journey! We have been tackling challenges and are taking it day by day causing me to be a “fly by the seat of my pants kinda gal.” The strength and mobility in my arms and legs have proven to be a challenge and I have perfected what I like to refer to as the “floor ballet” aka the odd fall here and there. I have began using a walker to help my balance and reduce the amount of “ballet performances”. I continue to take my radicava infusions and am hopeful for new medicine trails to start soon.

We are doing our best to look for the simple joys and take advantage of the good days.

Our family is grateful to the Alberta ALS Society and all the support they continue to provide us. They have had a positive impact on my quality of life, providing me with items that I use daily that give me independence. Most recently, the ALS Society has provided me with a scooter as part of their equipment loaner program. The scooter will give me the freedom to go for walks this summer with my family. I will be able to make memories and be present with them; for this I will forever be grateful. They have also connected me with my zoom coffee group that consists of others across the province who have been diagnosed with ALS. The group is a wealth of knowledge, advice, perspective and a safe place to share honest and open feelings.

I have recently been asked to participate in upcoming ALS Research Projects. The outcomes of these projects will hopefully provide further insight and steps towards finding a cure for ALS.

The ALS Society has been so good to me and I know my days would be so much more challenging with out their support. They have been such a blessing and I am so grateful to all the support they receive from people like you. I first handedly see the impact in your donations and I thank you for that from the bottom of my heart.

~Jenna

To read more on Jenna’s Story, check out:

https://www.alsab.ca/news/2021/3/1/salsa-presents-the-als-project-jennas-story

Making It Possible Day 6 - Purple Shirt Party

We continue to be inspired by the commitment and unwavering support within the Medicine Hat Community. This story shows the meaning of commitment as Megan Getz and Chad Watson truly made a difference in the ALS community this year in the fight against ALS.

In 2018, the first annual "Karen's Purple Shirt Party" in support of the ALS Society of Alberta was held. After losing wife and mother, Karen Wagenaar, to ALS in 2017, Rick and his four sons brought their family and friends together to pay tribute to Karen and her journey with ALS. The first Karen’s Purple Shirt Party was held on April 14, 2018 and raised almost $25,000. Since then, Rick and his family have remained committed to doing something special in honour of Karen, and continuing her legacy through their support of the ALS community. We are so honoured to be a part of the Wagenaar family's incredible legacy, and to continue sharing Karen's story with the community. We are so looking forward to everything that they accomplish as they pay tribute to Karen.

 This past year, the pandemic put a halt on all events across the province. However, this didn’t stop Megan Getz and Chad Watson from Medicine Hat High School from coming up with a creative way to host the Purple Shirt Party with the Wagenaar family. Talk about pivot, shift, creativity and sheer dedication. Their ingenuity shone through as they came up with the ALS Selfie Challenge.

 “This year because of COVID, we couldn’t have the basketball game and we were really upset about that, but we tried to think of a way that we could still do something, so we decided to do this selfie challenge. So, it’s kind of a substitute for the time being until we can have that big basketball game again,” said Megan Getz, an organizer of the selfie challenge and phys-ed teacher at Hat High.

 Medicine Hat High School’s basketball teams weren’t able to wear purple on the court to support Karen’s Purple Shirt Party this year, but the school challenged staff and students at all junior high and high schools in the division to take selfies using an ALS Society filter and post on social media, to raise awareness for the ALS community in Alberta.  The selfie challenge was a huge hit across the province. There were at least 9 schools that participated and many members of the ALS community. Our own superstars, Mikael and Frida Backlund from the Calgary Flames did the selfie, donated and challenged other hockey players. Mikael had the opportunity to host Karen, Rick and their four sons at a Flames Game, so this challenge was especially meaningful.

 Thank you to Megan and Chad for your commitment and dedication to the Wagenaar family and the ALS cause. You truly make a difference.

Making It Possible Day 4 - Dennis Rommell

Hello my name is Dennis Rommel.  I was diagnosed with ALS in December of 2020.  I had been experiencing symptoms for 3-4 years.  My mobility became quite challenged in 2018 that I had to go onto long term disability before I retired in the fall of 2019. After a fall at home and a 3 week stay at the Royal Alex Hospital in November 2020, I was originally thought to have PLS (Primary Lateral Sclerosis).   Many tests occurred during my stay at the hospital (CT scan, MRI, blood work and nerve conduction tests at the Glenrose).  When I left the hospital, I had to become used to using a wheel chair for my mobility.  I had my first appointment at ALS clinic at the Kaye clinic on December 1, 2020.  During that appointment, my diagnosed was changed to ALS.  Came as a shock at first hearing the words, I'm now dealing with a different deck of cards. December 1st is also my Wedding Anniversary to my wife Lorna of 41 years.  It was an emotional day for sure. 

First and foremost, accepting the diagnosis and the why me situation. The team at ALS clinic are great, very thankful for their wonderful patient/doctor support.

Accepting what I've been dealt and appreciating every day.  Things I first gave up was driving, my wife is now my designated driver. 

Things we love to do, is taking holidays in Mexico, our last trip was to celebrate our 40th wedding anniversary in Puerto Vallarta.

We are hoping to travel to Nipawin, Saskatchewan this summer if COVID restrictions allow.  Nipawin is where my wife and I were born, we moved to Edmonton in 1985.  We are going to visit with family and friends.  Also, we have a trip planned to Jasper, AB in September for my Birthday. 

My main support system is my family, they have been great on daily basis always available to talk and just listen. The ALS Society have given me a ton of support.  Helping with required needs for more independence and mobility.  I am so thankful for all the support they continue to provide for me. Also surely appreciate the Coffee Group zoom meeting twice a month, it is great to connect with others that know what I am going through.  We have a few good laughs & also tears, it is helpful sharing those emotions with other patients.

PLANS FOR THE FUTURE; just living each day to the best of my ability. Travelling this summer and spending time with family and friends. Looking forward to the Walk for ALS with family and a few friends. (of course socially distanced and safe)

Making It Possible Day 3 - Todd Bertamini

Making it possible.

My name is Todd Bertamini, and I am 50 years old.  My journey started in early 2017 when I was having issues doing calf raises and standing on my tippy toes, specifically my left foot.  I began to talk with my family Doctor and had the first of many EMG’s and an MRI.  But my focus on my left foot had to be halted as I ended up breaking my right ankle when out fencing and stepped into a badger hole (still to this day blame it on my left foot weakness). A few months to take care of the broken ankle and late 2017 started again with EMG’s and Doctor visits.  Within theses visits I discussed that ALS is in my family; so, a genetic test was performed, and it was confirmed early 2018 that I had Familial ALS (SOD1).

Since then, Rob and everyone else at the ALS Society of Alberta and the ALS Calgary Clinic have been of great assistance on my journey.  I have been in several research trials and am currently enrolled in the Biogen trial targeted at SOD1 gene.  I am a firm believer in participation of any trial I am able to join, as it provides a future for ALS patients and finding a cure. 

I was recently selected as a Community Fellow in a pilot program and enjoyed a few days attending a highly informative and inspirational ALS Canada Research Forum.  Along with the Research Forum I have joined with a few others and ALS Canada to have input on the start up of a Canadian Learning Institute.  With both programs I continue to advocate for ALS care and research and keep a positive outlook for change.

Prior to diagnosis I was highly active; playing hockey, baseball, golf, hiking or rodeo with my kids.  I still enjoy a few of those but slowly eliminating some as my capabilities diminish.  I live North of Calgary on an acreage with my wonderful wife and two amazing kids that push me everyday to enjoy it all.  Not everyday is great, some days I just have to sit on the sidelines and watch but glad to be able to appreciate every moment.  Each day I keep positive and have my family and friends drive me to be the best I can be and continue to advocate to a world without ALS.

Making it Possible - Mary Shannon Will

Day 2 of Making it Possible features Mary Shannon Will, an artist based in Calgary and Alburquerque that was diagnosed with ALS three years ago. With an artistic spirit, Mary decided to provide photos of her life, which comprise this video photo essay. Please take a moment to watch her story, and get to know Mary a bit better.

Making It Possible - Louis Sousa

We started noticing Louis’ slurred speech November/December of 2019. We made a doctor's appointment with our family doctor and we went to see him on January 2nd. He kind of thought it was a mild stroke that he had in his sleep, so then he was sending us for all those tests (MRI, CT scan). Then we were told that the MRI wouldn’t happen until January 20, 2021, a year later. So I asked the people who do the MRIs, what if we pay? They said well you can get it done within a week, but you need a special requisition. So then I phoned the doctor again and he said come on in. So he got us in to see the heart and stroke doctor at the U of A and that’s where they did the MRI and CT scan so we didn’t need to pay…we’d been going through this process all of 2020 and if we would have just gotten that MRI in January 2021, a year would have been lost with our medical system. From the heart and stroke, that’s when the doctor said he sees everything normal with those results. We were referred to the Kaye Clinic, to the neurologist group.

 Louis said he started noticing his speech in October 2019, but us, we didn’t notice it until basically late November/December 2019. And he always had twitching, but you don’t hear much about ALS so you think it’s probably just tired muscles, like everybody twitches once in a while right? Then the slurred speech happened and then he was losing a lot of weight. Louis also has Crohn’s Disease and we had seen his doctor for that and he said for him to be on a special diet with lactose-free and gluten-free foods, so we thought that was why he was losing weight, but it was because of ALS… he was tired all the time and he was on the CPAP machine and now he’s moved on to the Bipap and that’s helping him a lot better for sleeping.

 It’s changed his life cause he can’t speak, and that’s been tough. He had to go into long term disability September after working with the same company for 40 years. He worked in asphalt, so he was on the street where he had to stand all day, like for 12 hours a day, and he’d come home with hip pains, back pains. So he had to stop. And we’ve always had values, like live everyday as you can and enjoy it, but you know you’ve got that (ALS) now sitting at the back of your head… but we’ve always had the same values. We see more family, we FaceTime them more, more people check in now. But otherwise, we’ve always been family orientated and his friends still keep in touch, but it’s hard when he can’t speak. But FaceTime is the way to go because I can be there, and I can help with Louis’ speech, so that’s what we’ve been challenged with.

Louis has an ALS iPad and he can do the sentences, but he really doesn’t like technology, never has. And even when he was working, he had an iPhone, but he would always speak to text. So it’s been very difficult that way. And his speech has gotten much worse, like a lot of us have a hard time understanding. So we tell him to just give us the one word and he still can’t get it, so he writes it down on the iPad. And his swallowing, he told me the other day that it took him 45 mins to eat a waffle. He also does the tucking to drink his liquids and we thicken a lot of things. And for a lot of foods he did like, he doesn’t want to eat cause it seems as if they have no taste or it takes him forever to chew. He bites his cheek a lot. And we belong to the ALS Society, so I do the coffee/caregivers groups and he’s done the coffee groups and you don’t see many with Bulbar ALS. And a lot of them you’d never know (they had ALS), the ones that we have met through the Society. I think there’s one other person that has Bulbar ALS, but otherwise most of them, they all speak but most of them I think it’s their limbs that have been impacted. Also his hands aren’t as strong as they used to be, but other than that, he is still able to walk. And I always make him a list of things to do throughout the day, so he does keep busy. And my daughter, she lives at home, my oldest, and she helps a lot with Louis, so that’s kind of a blessing since he’s not home by himself. But I’ve moved my job and I’m now only 5 mins away. But we’ve had a great team!

The ALS team? Remarkable, not a negative thing to say. Our appointments are very long when you go there. You go every 3 months and you’re there for 3-4 hours. You see the nurse, the social worker, the speech therapist, the dietician, the psychiatrist, the respiratory therapist and then the last person we see is the neurologist. You can email/phone them and within a day you’ve got a response back. And even the ALS Society, like Deb and Christie, thank heavens for them. Like the equipment we’ve received for Louis, and they are just so supportive. But you know, a lot isn’t said about ALS…like people don’t understand what it really is. And you never hear about it, which is very sad. Some of it is discouraging, but the team is remarkable, we have nothing negative to say. We’ve been blessed with them. With a recent ALS diagnosis, have a great support system and keep a journal of when things happen so that when you have to talk with the doctors, you can keep track of when you notice things. When I go to appointments, my binder comes with me and I write everything down. And one wonderful thing is, they allowed us, the first time we went to meet the ALS team, to record the meeting and my daughters were on speaker, so that’s a very good thing/idea… it was remarkable for them to allow us to do that. Reach out to people and enjoy as much as you can.