Wendy and Michael Wilson: Living with ALS, in Their Own Words

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By Wendy Wilson

Hello! We are the Wilsons. I’m Wendy, Michael’s wife and caregiver. We focus on enjoying that chill family life in Oklahoma City with our 14-year-old daughter, Londyn, and two dogs, Luna and Sparky. And we are a family living with ALS.

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Michael and I met during college at Oklahoma State University in 2005 when he mysteriously stepped out of the shadows to help me with a crossword puzzle. Three years and a fun scavenger hunt proposal later, we tied the knot and got busy building our careers, family, and plans for our future.

Londyn is rocking her first year of high school. She’s honing her art of argument and mad burns in debate and thankfully staying out of high school drama. So far, this year she has devoured 35+ books and has big plans for her personal library (AKA a bookshelf in her bedroom).

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I am a registered dietitian and lactation consultant and recently started my private practice which allows the flexibility for me to set my own schedule and work to support my family as much as possible. Whenever I find free time and energy, I like to exercise outdoors, hike, cook, read, craft/make/build things...I’ll try pretty much anything as long as it doesn’t run a huge risk of me breaking a bone. Have you ever gone Latin or ballroom dancing? It’s FUN!!

Michael went on to become manager of the mechanical engineering department of a local architectural and engineering firm where he designed commercial buildings. When he wasn’t hard at work, Michael enjoyed playing disc golf and softball with his friends and family. He could load a dishwasher with the skill of a professional Tetris player! That all changed when he was diagnosed with ALS.

His Diagnosis

After his father passed away in November 2014, Michael started having muscle fasciculations in his right arm. We thought it was just the stress of his loss, but after a few months it spread to both arms and abdomen. He started seeing a neurologist in the summer of 2015. With twitches being the only symptom, we were told it was likely benign fasciculations, but he should continue to see the neurologist to closely monitor for signs of muscle weakness. Unfortunately, around September 2016, visible muscle atrophy was noticed in his right hand. After ruling everything else out, he was officially diagnosed with ALS in February 2017 at the age of 35.

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We decided to get a second opinion at the Mayo Clinic in Scottsdale, AZ and made an adventurous family road trip out of it. Londyn was 7 years old at the time and we wanted to create some memorable moments. Our trip took us to some of nature's finest at the Grand Canyon, entertaining shows in Vegas, and all the yummy food along the way. Pro tip: do NOT do an Easter egg hunt in a Vegas hotel room. Your child may find the 20 plastic eggs along with a stranger’s thong between the curtains.

Finding Support

We’re very fortunate, we have an incredible support system in our friends and family as they are always willing to help. I was very resistant to accepting help in the beginning. Before she passed away, Michael’s mom started doing our laundry and dishes when I was at work and while I wasn’t super excited about someone else handling my undies, I got over it really quickly because it was such a relief when I didn’t have to do it. Other small things here and there are noticed and appreciated, like when someone carries the portable ramp or cough assist.

We probably could do better at asking for help more often, but we know it’s there if we need it.

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A huge thing is we continue to go out with friends and family and try not to let ALS stop us from doing what we enjoy. We haven’t gotten brave (or maybe crazy?) enough to float the river like we used to, but we still go out to eat, crack up at comedy shows, and drink too much…I mean, just the right amount when we get all the friends together!

Londyn is just amazing. She was only 7 years old when this journey started and has been incredible with her understanding and ability to roll with the situation. She is always willing to lend a hand whether it’s helping Michael scratch his face or eat a snack. It hasn’t been without a few heartbreaking moments like missing out on a bedtime story because I was busy giving Michael his Radicava infusion, but we try to be mindful of these moments and give Londyn the space to express her frustrations, which are few and far between.

What People Should Know about ALS

I think the general public does not realize the significant impact ALS has on every aspect and detail of a person's/family’s life. They typically think of surface level things, like “it must be hard to not be able to walk or not be able to use your arms/hands” but don’t realize that means he needs help getting to the toilet, showering, brushing his teeth, fixing his hair, scratching itches, picking boogers. Everything.

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If we have an early event, we have to get up two hours earlier than usual to get Michael ready to leave the house on time. And if someone else is taking Michael out, they might not realize they need to pick him up and drive our van, they have to know how to use his cough assist, feed him, empty his catheter bag, and possibly drive his chair for him if it’s cold outside because his body stiffens up in cooler weather. And it’s understandable because unless you’re in it and doing it, you don’t realize everything it entails.

People also don’t realize where services are limited or lacking. Like health insurance doesn’t cover enough home health or caregiver services at all to allow me to work full-time or be away from the house for more than a couple of hours here and there. And most people can’t afford to pay for those services out of pocket. Or if they can afford it, it’s hard to find a consistent caregiver.

Or if a person has ALS and doesn’t have friends or family to care for them, there aren’t nursing homes who will accept people with ALS. Family caregivers often have to leave their jobs to care for their loved one due to a lack of options. Then that leaves them in a financial bind now and in the future when they haven’t been able to build up their Social Security or retirement savings to retire. It affects everything now and in the future.

LIVING with ALS

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Now that his body no longer allows him to do many of the things from his past, Michael has been able to shift his focus and abilities elsewhere. He has found many ways for technology to help him continue to do as much as possible, including helping our daughter with homework, playing his Star Wars game, advocating for everyone affected by ALS, and doing our taxes every year!

There is no shortage of funny situations we find ourselves in, and we always try and take the opportunity to laugh when they happen. Like Michael locking himself in the van, getting his wheelchair stuck in the sand and having to use a riding lawn mower to tow him out, or our big dog, Luna, getting her cold nose in Michael’s booty when he’s helplessly dangling in the Hoyer lift as I’m taking him to the toilet.

I shared this in a social media post not long ago, and I think it really sums up who we are:

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"Last night we were asked for the first word that came to mind when we heard the word ‘joy.’ Tonight I have my answer: THIS.

This husband who amazes me every day. This daughter who I get to watch grow and develop into a wonderful human being. This life.”

Special thanks to Wendy, Michael and Londyn for allowing us to share their personal journey with the ALS community. To learn more about how you can help and get involved in the fight against ALS, visit our website HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to our blog or follow us HERE.

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Comments

Submitted by: Sharon M. on Wed, 12/20/2023

Wendy, I understand how your lives have changed. My husband had ALS for 2 years before he passed away in 2004. I will keep you all in my prayers. I am very supportive of the ALS Association.
They are WONDERFUL!!

Submitted by: Stephanie O. on Fri, 12/22/2023

Sharon,
Thank you so much for your support, and we are very sorry for your loss.

Submitted by: Laura R. on Fri, 12/22/2023

Oh my goodness, thank you for inviting us all into your life. I am honored but also inspired. I have heard a lot of sermons on the value of service, but you have preached one of the loudest to me through these paragraphs. Thank you for using your communication skills to allow us in to your family and your life.

Submitted by: Rachel R. on Tue, 12/26/2023

Wendy, I have not seen Michael since we were children, his sister Melissa was one of my best friends and their family was always amazing people. I want to tell you thank you for sharing your story about ALS.I never knew about what it is or what it affects until I read your story. You are an amazing woman and your story as well. I want you to know your family is Beautiful and the love you all share seems effortless. Thank you for inspiring me and sharing your story. I know it will also inspire others who are struggling with ALS or know someone who is.

Submitted by: Johna C. on Fri, 01/05/2024

Great story!! I love getting to read others personal stories of dealing with ALS because even years after having family members pass away from the horrible disease, I still refer to things DAILY that happened or were so funny to me and my family! I think it's a great way to keep things alive whether I sound like that silly girl stuck on that or whatever! Honestly, I don't think watching that disease take over two of my family members lives will ever go away!

Submitted by: Stephanie O. on Tue, 01/09/2024

Johna, I am sorry for your losses, but glad you are able to still find joy in the memories of your loved ones.

Submitted by: Judy J. on Thu, 01/18/2024

Wendy, Michael and Londyn,

Thank you for sharing your story! As a family, we lived with ALS in very much the same way as you. While reading your story, I both laughed and cried and I totally agree that “joy” is THIS. ALS brought our family so close in so many indescribable ways (though you found a most excellent way of describing it). We lost my husband almost two years ago after living with ALS for five years. During that time, we shared many challenging, interesting and humorous times (like the dog’s interest in the Hoyer - lol). Our three children have grown to be incredibly compassionate young adults, with an acute awareness and attitude of service for others facing disabilities (not typical of many in their age group). Like Michael, my husband Dan’s positive attitude and interest in helping others throughout this journey was and still is inspiring. God bless you for sharing, bringing a dose of reality and inspiring us.

Submitted by: Debbie P. on Thu, 01/18/2024

Thank you so very much for these intimate insights into.your lives. My husband was diagnosed eight months ago..it's overwhelming but to read your story of love and fun is like alittle candle in the wind xx

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