What It Feels Like: Living with ALS

Adam Welburn-Ross was just 43 when he received a devastating diagnosis: he had ALS.

Emma Jones 14 minute read May 6, 2022
Adam Welburn-Ross, a patient with ALS, wears a grey shirt and looks into the camera. He has a salt-and-pepper beard with brown hair combed back.

"The problem with that is that when you're classified as a rare disease you don't get the funding that cancer gets, you don't get funding that a lot of other neurological diseases get," says Adam Welburn-Ross.

Adam Welburn-Ross was 43 when he finally had a diagnosis. A scary fall brought him to the emergency room, and neurologists noticed his brain wasn’t communicating effectively with his muscles. Doctors told the father of two, and hockey and music lover that he had ALS.

Amyotrophic lateral sclerosis (ALS) — better known as Lou Gehrig’s disease –— causes the body’s motor neurons to deteriorate, leading to muscle weakness. Eventually, the neurons stop functioning, according to the Mayo Clinic. Patients lose the ability to walk, talk, eat, and even breathe.

ALS has no known cause. There’s a genetic component in only about five per cent to 10 per cent of cases. In most, it is likely a complicated interaction between genetics and environmental factors, explains ALS Canada, although what these factors are is not clear. There is no known cure and few treatment options. It is effectively a death sentence.

About 3,000 people in Canada have ALS. About 1,000 of them die every year and 1,000 more will be diagnosed. Life expectancy is only two to five years after diagnosis.

Healthing,ca spoke to Adam about how this devastating diagnosis changed his thinking. Although he’d always been a positive person, he realized most of the things we spend our lives worrying about are irrelevant. He now lives day to day, enjoying the moment, but is also focused on creating a legacy and advocating for ALS research.

This interview has been edited and condensed for clarity.

How did you realize you had ALS?

In April of 2017, I was catching the ball of my left foot a little bit. I started getting some cramping in my legs that I never had before. It’s very, very subtle, to the point where you think it’s a one-off or you’re just being clumsy.

I was 43, I thought I had to take better care of my health in the gym. I had some lower back issues when I was a kid. My doctor thought it was to do with the sciatic nerve, so we fixated on this path. I was getting X-rays and they weren’t finding anything; it just dragged on and on.

In August of 2018, after a family trip to Ottawa to visit my mom, I was unloading the car, taking things upstairs to unpack. On the last trip, I got to the top of the stairs, put one foot on the top step, and all of a sudden, my legs buckled and I was about to fall down the stairs. Fortunately, I caught myself.

I checked myself into hospital and was there for two days. On the second day, the head neurologist did ECG and another test that looked at the brain signal to the motor neuron. And he saw right away that it was communicating, but not firing. At that point he said with 90 per cent certainty I had ALS.

That must have been hard to hear. 

I was in the hospital by myself because I was thinking I’m just getting checked up. You don’t think you’re going to be handed that kind of diagnosis.

The neurologist and his team were really great, but they had to leave after my appointment. After telling me I had a terminal illness, they wheeled me out into the hallway to wait for the porter.

I was sitting there alone, just beside myself. It was probably the most emotional I ever was.

It’s bizarre, because on one side it was the lowest point I ever felt, but it was also the exact moment where everything fell into place. I saw what I needed to do.

My wife and I had been talking about separating for about two or three years and I was in another relationship. I knew I wanted to be with my partner, Danielle, who I live with now. I’d have understood if she wanted to run and I wouldn’t blame her because this is not a great diagnosis, but she stayed.

I started to think about some of the most ridiculous things you would think about. All the obvious stuff, like I’m going to miss my kids’ weddings, I’m not going to see my grandkids. I was getting very upset; it was tearing me apart. And then I thought, I can’t stop. I can’t live in a future I don’t know and mourn something I think I’m going to miss out on. That’s not how life works. You’re only guaranteed today and we’re all on the same path. So, I said to myself, ‘Okay, let’s not worry about tomorrow, let’s just focus on today. Let’s try not to think about what you can’t do, think about what you can do.’

That was a big portion of my coping mechanism — stay focused on the here and now and start to deal with it.

ALS is a horrible disease. You wouldn’t wish it on anybody. But I’ve been able to explore and understand this perspective — whether it’s a level of communication, or the way that you see the world, or the way that you love people. It puts everything in line and you realize most things we worry about are irrelevant.

You were in hospital for four weeks while you waited to get into an ALS clinic. How did you pass the time?

I read up as much as I could, got all my questions down, learned about the disease and how it works and what’s happening. I didn’t shy away from anything, reading all the gory details.

Unfortunately, that’s what you get faced with right away. They tell you you’re going to die in two to five years and here’s how you’re going to die. And it’s not very nice, but I’m three years in and I’m still very highly functioning from a speaking and eating perspective, although my breathing is laboured.

I still get a lot out of life, it’s just changed. I used to be the guy who helps people out and now I’m the one who has to ask for help. What’s rewarding is that people in my life who are providing the help are absolutely amazing. They are the heroes of the story.

I think it’s been said a million times, but the hardest part of this disease isn’t so much what’s happening to me, it’s watching people watch me go through it. It is harder for my friends and family than it is for me.

I’m a positive person by nature. I think it was my mom who said, ‘It’s going to be your positivity that gets us all through this.’

Every day, you really have to change and adapt. That’s one of the most amazing things in life: human beings’ ability to change and adapt. If you have to relearn how to eat and write, or how to leap differently, you do it. We’re super resilient. It’s inspiring, but also shocking we have the ability to do that.

It was my mom who said, ‘It’s going to be your positivity that gets us all through this.’

When you’re talking about ALS, you never want anybody to feel like you’re a victim. People have said that my positivity is probably more me being naive, or being in denial. But I know exactly what’s coming. I feel it every day; I know what’s happening to me, I know where it will get to. I’ve seen people with it, I’ve seen the pictures of it, I’ve read the articles. But that doesn’t scare me. What Danielle and I try to do is really try and stay ahead of it. We make sure that we’re planning, we make sure we know what’s coming so that we can be prepared.

I had a feeding tube inserted preventatively, because I knew, at some point, it will probably be something I need. It was easier to get this done and recover while I was still strong and healthy than doing it at the last second. I don’t currently use it, but now we don’t have to worry about it.

You say your bucket list has changed since your diagnosis — how so?

What used to be on my bucket list was things like I wanted to drive a Zamboni. Now I want to sit down with people like the Minister of Health — people who can bring influence and change through government intervention and increase awareness of ALS.

That’s partly what drives me today. Whether it’s advocacy for ALS, or talking about my story, I want to increase people’s awareness to support the research that’s required to eradicate it. Will it happen in my lifetime? Probably not. But everything I do moves it that much closer.

I was in a clinical drug trial knowing full well I could either be on a placebo or on a drug that could work. I said, ‘I’m going to be your best guinea pig. I don’t care if I’m on the drug or a placebo, because I know you need both to make it work overall’. That trial ultimately came out as statistically ineffective, but that moves us one step closer to understanding the disease.

It’s about legacy; those are the little things I want to do. I like to make sure that I can use my voice because a lot of people left can’t speak or are very laboured in their ability to speak. I’ve been given that gift, so I try and use it.

You’re also using your voice to advocate for better pay for personal support workers.

I get a lot of help from the personal support workers (PSW) who come into my home. The people I have are so amazing — they are so compassionate and caring.

They make, on average, $17 an hour. Thanks to COVID, the government recognized we should pay them a little bit more, so there was a $4 increase at one point for frontline workers. It’s now been reduced to $3. But these are people who are caring for the most vulnerable in our community and they’re making maybe $20 an hour. They don’t get paid for traveling in between clients. So, a PSW may have eight hours of work in a day, but they’re not getting paid necessarily for eight hours.

The government’s push to keep patients in their homes can only be done with PSW care. These workers are on the frontlines of the community. Without them, this all falls apart. We will be taking up beds in hospitals and nursing homes if we can’t get that kind of care.

You sound like you’ve accomplished quite a bit.

The crazy thing is seeing and hearing me are two different things. I can’t move my hands. I can move my arms around, but I have no dexterity of my hands. Same with my legs, I can’t stand up and I can only wiggle a couple of toes. But those are just appendages. They are there to look good. As far as cognition and my ability to speak, those are still there.

You mentioned your girlfriend, Danielle. How is she coping?

It’s exhausting, that’s the only way to describe the situation. Thank God, she’s been allowed to work from home due to COVID, so she’s here, but she has a job to do as well. My care gets a little bit more difficult every day, which requires her to be on her toes all the time. I use a lift with a sling to get out of bed, to get into the bathroom and into a chair for the day.

I don’t think I would have experienced such a level of love and compassion otherwise. You don’t know intimacy until you have somebody who sits with you every day and you share a meal. Literally, share a meal, where one person is feeding you. I’m not a person who has ever had to ask for help before; when you get that level of help, it’s humbling.

How have your children reacted?

My son now 17, did the best thing possible: he didn’t treat me any differently. As I was falling and stumbling around, he would take the p— out of me. It was very much same old, same old, very normal. He and I are both into music, so we talk about music all the time, video games, Borat. Sometimes I wonder how much he really does acknowledge what’s happening. Even though we can see a decline, I don’t want it to be a surprise to my children.

My daughter, who is attending the University of Windsor, is very rational and knows what’s going on. She gets the information about ALS. She’s done some of her own research and asks me questions. She’s a very old soul. She has more perspective on life than I ever had and she’s only 20. It is very comforting.

When I was diagnosed, I told the kids, ‘You are at the beginning of your path in life, you need to go blaze your own trail. You don’t need to worry about looking after me.’ I keep them abreast of what’s going on but, more importantly, I wanted to live almost vicariously through them.

Because I’ve been afforded this time and I am not deep at work, I can focus on my kids quite a lot. They come to me with big questions or for advice. That’s really comforting. We’re all managing.

When I talk about legacy, ultimately, they’re my legacy and I couldn’t be prouder of them. I think they’re going to be wonderful people. They’re going to have a different perspective on life because of what I’m going through. Life is short and I think they understand that. When I’ve gone one day, I’m comforted in the fact that I think they will be well adjusted and able to deal with difficult times on their own.

How has technology helped you manage your disease?

I like gadgets. I probably have more stuff than I probably should, and some of it hasn’t lasted very long. We’ve almost got a smart home.

I use the iPhone 11 Pro, which allows face recognition. That is great because my thumb wasn’t strong enough to push the button on the old iPhone. It’s just an appendage at this point, but I can move my arm to move my thumb, so I can still punch in my codes.

I got Apple TV so I could stream my phone to it and read a lot easier. I dictate everything now — the dictation on the iPhone is phenomenal. I can do everything on my phone — I can’t sign with a pen but I can sign a PDF with my finger on my phone.

I now have an electric wheelchair, and it allows me to change position so I can get off sore spots during the day. I can also go into a full recline if I want to sleep.

I also have an appointment with a tech person at the ALS clinic because I’d like to understand some of the eye gaze components available if I get into a locked-in state. I’m trying to be pre-emptive about that type of thing. I want to know what else there is for me to use so I have the same maneuverability.

As an advocate for raising awareness about ALS, how do you think funding can be increased?

The challenge is awareness. This is an incredibly rare disease, but it really isn’t that rare. To put it in perspective, there’s only about 3,000 of us in Canada, but if we had the same life cycle as a patient with MS, there would be 75,000. Because we turn over very quickly, ALS still is on the radar as something that’s very rare. And rare diseases don’t get the same funding as cancer or other neurological diseases.

Also, by the time somebody with ALS gets to the point where they feel they can talk about it, they may no longer be able to communicate the way they want to, even though from a certain capacity they still are there. If I couldn’t use my voice, we probably wouldn’t be having this conversation. I know most of our ALS folks tend to lose that ability.

The 2014 ice bucket challenge was amazing — it was a viral campaign gone right. But its success has never been replicated. And how many people even knew what the ice bucket challenge was for? Like, you know, you get the kids, you do the thing, you do your donations and you’re like, ‘Okay, now we can move on.’

Although we’ve made many strides forward since that point, it is incredibly difficult to fundraise to support ALS research. That’s why it’s important to lobby the government to allocate at least an earmark of funding for ALS because it doesn’t exist today. We need a generic database about ALS that people can tap into without having to start at the beginning every time there is new research. This should be supported by government.

You need care, you need funding into research and development. And you need to partner — not just take dividends off pharmaceutical companies, you actually have to work with them. There’s a lot of great organizations that are doing that like ALS Therapy Development Institute in the U.S. and ALS Canada. But it needs a lot of direction, care and thought put into it, and people like me who are in the middle of it, talking about ALS day in and day out.

More information on ALS, how to help, and support for individuals who have been diagnosed can be found at ALS Canada.

emjones@postmedia.com | @jonesyjourn

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