Letter: I see my wheelchair beside my bed — and remember that I have ALS

letter to the editor

Dear Friend,

I’m walking again. Really walking! I’m on the beach, the sun’s shining and I’m splashing in the sparkling water. Then, my wife, Denise, gently calls my name. I open my eyes and reality floods in.

I see my wheelchair beside my bed — and remember that I have ALS. Sometimes my dreams are better than being awake. That’s because I can’t walk or work anymore. And my voice is so weak that I can barely be heard.

The ALS chapter of my life began about five years ago. My hips felt sore, but I wasn’t worried; I’d spent my career in the food service industry on my feet and loved to golf and kayak.

But soon, my legs hurt and I was limping.

My doctor ran tests. I waited anxiously for the results, but they didn’t show anything. Finally, after two long years, I was referred to a specialist in London — a six-hour drive from my home in Sudbury.

By then, I was using a cane.

After more testing, Denise and I got the news no one wants to hear: I had ALS. The doctor explained that I had a “slow” form of the disease and my life expectancy would be five to 10 years. I was numb. It didn’t sink in. I was dying and there was nothing I could do — except be strong for my wife and our family, especially our grandchildren.

It got worse.

Further testing showed that I actually had another type of ALS and only two to five years to live. I was overwhelmed and scared. What could we do except cry? I can’t sugarcoat what’s happening to me.

Right now, my clock is ticking and it’s ticking fast. I can’t walk or play with my grandchildren out in the backyard anymore. It’s hard to talk, my arms are weak and I have to use something called a BiPAP machine to help me breathe.

Luckily, though, I can still type on my tablet. So, I’m writing to you, asking you to help ALS Canada make this disease treatable, not terminal.

A generous donor will match your gift dollar for dollar up to $27,500 — so please give whatever you can right now. We desperately need more research because there are no effective treatments and no cure.

ALS is hard to diagnose. It can strike anyone, randomly breaking down your muscles until you end up a prisoner in your own body. In their efforts to find a breakthrough, researchers are trying to understand how our genes play a role in this disease — but they need your help, so please send your gift today.

Despite ALS, I try to be positive…I see my wheelchair beside my bed — and remember that I have ALS.

I believe that treatments and a cure will be found. Not in time for me, but to save other dads, grandfathers, moms, sisters and friends. You can help make it happen. You’ll also provide urgently needed support services for ALS patients and their families and caregivers.

Thanks to your generosity, our ALS Canada support group meetings have been a huge help to me; my family and I don’t feel so alone. By donating again today, you’ll enable more patients to get support from people who know exactly what we’re going through.
What’s more, you’ll ensure that ALS Canada continues to provide in-home visits. When mobility is an issue, it’s great that a staff member will come right to your door, whether it’s to share information, help you find the right local services and support clinic, or just listen.

And I can’t say enough about the equipment I received because of generous donors either.

Wheelchairs and stair lifts are essential — they help me stay as independent as possible. But they’re expensive. As well as a wheelchair and BiPAP machine, I use a walker, scooter and neck brace. And soon, I’ll need another wheelchair to help me get in and out of the shower. By donating, you’ll help another person get the equipment they need, including basic communication devices.

Remember, your gift will be matched dollar for dollar. So please give today. ALS Canada has enclosed personalized labels as a thank you for your support.

It’s hard to feel hopeful when you have ALS, but I’m not giving up. The incredible love and support of my family is keeping me strong. As an ALS Canada Ambassador, I’m living my life with purpose and meaning and I’m grateful to be able to share my story with you. Together, we will help research move toward treatments and a cure.

Together, we will support families devastated by this heartless disease.

June is ALS Awareness Month, a time to spread awareness and raise funds. Please make a special gift and join families like mine as we fight to make ALS treatable, not terminal.

Yours sincerely,

Ron Myles
ALS Canada Ambassador