On July 15, 2013, a few days after my 46th birthday, I was diagnosed with ALS (amyotrophic lateral sclerosis). ALS is a dreadfully debilitating disease, made famous by the Hall of Fame baseball player Lou Gehrig, who died of ALS in 1941. He was only 37 years old.
In his famous 1939 speech, given before 62,000 fans at Yankee Stadium and only two weeks after he had been diagnosed with ALS, Gehrig said, "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth."
While I don't consider myself the luckiest man on the face of this earth, I am still lucky to be alive. I may be weakened, but I can still do things and contribute to this world.
On October 20, 2013, I will be participating in a 5K walk to raise money for the ALS Society of Canada. I am also making family, friends, coworkers, and anyone else I come across, aware of my ALS diagnosis.
People may associate ALS with Lou Gehrig or the famous physicist Stephen Hawking, but mostly it affects ordinary people who, because of the debilitating nature of the disease, are often not seen or heard by the public. I hope people can learn a bit about this mysterious and life-changing condition.
My first noticeable symptoms of ALS came around September, 2012. I had some weakness in my right shoulder, arm, and hands. I discounted the weakness even as I thought it was problematic. For example, when I had difficulties using a can opener, rather than thinking my fingers were getting weak, I blamed it on the can opener!
I was also getting a lot of muscle cramps and fasciculations (muscle twitches). I would get cramps in my abdomen or in my calf muscles, or my arm or fingers would occasionally twitch. I thought maybe I was dehydrated or had a vitamin deficiency.
Then I started noticing that my legs were becoming weaker. At the gym, I would test the strength of my right arm versus my left arm and my right leg versus my left leg. It seemed that my whole right side was becoming weaker, despite the fact that I'm right-handed and my right side had always been my stronger side. I wondered if I had had a stroke or a brain tumor that was causing this change to one side of my body.
I didn't have a regular family doctor, so last January I saw a doctor at a walk-in clinic. The doctor initially ordered a blood test and, when it came back normal, she referred me to a neurologist. The neurologist took a detailed case history and performed an EMG (electromyography) test. An EMG is a critical test as it can reveal abnormalities in the electrical activity of the motor neurons and muscles.
What is ALS?
There is no actual test for ALS. Patients are diagnosed with ALS based on their case history and tests designed to rule out other possible causes of their symptoms. It can take a long time for a person to be diagnosed with ALS, as doctors will want to consider other possible causes of symptoms before arriving at the conclusion of something as rare and serious as ALS.
ALS is a progressive neuromuscular disease causing the degeneration of motor neurons, which control the ‘voluntary' muscles in the body. Without stimulation from the motor neurons, the muscles themselves begin to atrophy and degenerate. Further, communication between the brain and muscles can cease, leaving the person essentially paralyzed. People with ALS can lose the ability to move all parts of their body, the ability to speak, to swallow food, and ultimately to breathe.
People with ALS are able to retain some body functions, though, such as bowel and bladder functions, eyesight, hearing and sense of touch. Usually brain function is not affected, so they can think normally. Thus, some people with ALS feel that they are trapped within their own (immovable) body. It's a terribly debilitating disease, one which affects not only the individual but their family, friends and caregivers.
It's quite rare (the incidence rate is two per 100,000) and although it is associated with genetic mutations, most cases of ALS are considered sporadic, meaning that they are basically random. Less than 10% of ALS cases are inherited.
ALS usually strikes people from their 30s to their 60s, although there are cases of people younger and older. The commonly cited statistic is that 80% of the people with ALS live only two to five years after diagnosis. But each person's journey is unique.
ALS is an incurable disease, with very little in the way of treatment. Much research is needed to understand the causes of the disease, and to develop treatments and ultimately a cure.
Around the time I was seeing the neurologist I found out that my Aunt Mary was experiencing similar muscle weakness issues. She was finding it difficult to walk upstairs, to use nail clippers and can openers - the very same issues that I had. I explained that I had seen a neurologist and had an EMG test. She had an EMG and an MRI and was eventually diagnosed with ALS.
Not long after that I was diagnosed with ALS, too.
Although we are in the same family, it's not definite that we have the inherited form of ALS. My father has five sisters and there are many cousins in the family, but only my aunt and I have ALS. It may just be a strange coincidence. And while it may be tragic that two people in the same family both have ALS, in some ways it's helpful to my Aunt and me to know someone with the same condition. We can compare notes and learn from each other's experiences.
The first neurologist had referred me to Dr. Lorne Zinman, a neurologist and the medical director of the ALS Clinic at Sunnybrook Health Sciences Centre in Toronto, Canada. The ALS Clinic is held on Tuesday mornings and there are several doctors and professionals from related disciplines that are on hand to see ALS patients. One can see a neurologist, respirologist, physiatrist, occupational therapist, and more.
I was instructed how to best walk with a cane, was given a prescription for an orthotic device to help me walk, and was given a breathing test - breathing can become difficult for ALS patients, as the muscles involved in breathing are weakened. I saw others in the waiting room, all of whom were in worse condition than me. Some were in wheelchairs or using a rollator (walker) and moving with some difficulty. Some could not speak or could only make grunting sounds. Some had difficulties moving at all.
It was a bit foreboding seeing people in that state and knowing that I would end up in that condition someday.
After being diagnosed, I started noticing in the media more and more reports about people with ALS. CNN anchor Suzanne Malveaux's mother was diagnosed with ALS. Suzanne did a three part report for CNN on the disease featuring her mother, former NFL player Steve Gleason and Augie Nieto, founder of Life Fitness.
- CNN: Those with ALS redefine what it means to be alive (Malveaux Mission)
- CNN: Former Saints Player Battles ALS (Steve Gleason - Team Gleason)
- CNN: Life Fitness Founder Fights ALS (Augie Nieto - Augie's Quest)
I believe that your mental state can affect your physical state, and so when I learned about my ALS diagnosis I think I did a good job of taking it in stride. Knowing that you have a horrible and fatal disease can be very scary, but I think that it is important to accept things as they are and this can help relieve some of your anxiety. Acceptance may be difficult, but it's better than fear and worry.
A different life with ALS
Just this year I became a fan of the show Downton Abbey. I bought seasons one, two and three on DVD and watched them over a period of weeks. I remember seeing the episode where Matthew Crawley is injured and being treated at Downton Abbey. The doctor suspects that he is paralyzed below the waist and will be unable to walk. He tries to console the family by saying "It's not the end of his life." Lady Mary says something like, "It's the start of a different life." When I saw that episode I thought they were speaking to me.
Yes, I am suffering something that is life-changing. But it's not the end of my life - at least not yet. It's the start of a different life.
After diagnosis, I told co-workers about my condition. I told them I would have to work limited hours in the near future and that I would have to go on disability leave at some point. Walking was becoming difficult and I was using a cane. I was also having problems with my fingers. At times they would stiffen or cramp or curl up. I would need to use the other hand to straighten out my fingers. My fingers would also get sore from typing and from using the mouse.
Since my job was to input content on my firm's website, this severely hampered my ability to do my work. I did try to work for a while, though, because I thought it would be good for my mental health. Going into work, feeling that you're needed, and interacting with your work friends is good for the mind, I think. But it got to the point where I couldn't get much work done and I told them they would need to hire someone to be my replacement and I would happily train this person in my job. I now use a rollator (walker) when I go to work and will be going on long-term disability leave soon.
I recently had a home visit with a woman from the ALS Society. I was telling her how so many friends and coworkers offered their support and sympathy, and how many people told me "If there's anything I can do..." But, I said, there's really not much other people can do.
She said that I should allow people to do things for me. She said that would be my gift to them. People feel helpless, but if you allow them to do you a favor, to help you run an errand, or go with you to an event, it helps you and it makes them feel better, too. So, now I'm not embarrassed to ask for help, even if it's something as simple as "Could you button my jacket?"
Because ALS is so debilitating you need to get a lot of help from a lot of people. Caregivers have to look after your daily needs. Community services, physical and occupational therapists, and people from the ALS society and other organizations provide help. Doctors and other healthcare providers at the hospital and at hospices look after your health and well-being. Friends and family and people in the community provide their own help and support.
Because I'm going to be on the receiving end of so much help from so many people, I want to give back a little bit now while I can. Doing a walk to raise money for ALS Canada and letting people know about the good work done at the ALS Clinic at Sunnybrook are small things that I can do.
I also want to thank in advance all the people who will be helping me in the future. In the future, I may be in a state where I can't speak or write anymore, so I want to say it now: Thank you!
Speaking of writing, I'm actually writing this story using Dragon Naturally Speaking. Because it's difficult for me to type or to write by hand, if I need to produce a large volume of text I use Dragon speech recognition software. I speak into a microphone hooked up to my computer and the software types out the words. It's not perfect - it's kind of like those closed captions on TV, where most of the words are correct but every so often it produces something that doesn't quite make sense - but it's pretty darn good, and I can fix the errors by proofreading and making changes by hand.
They say that everyone's ALS journey is different. My ALS is the limb-onset type. This means that it started with weakness in the limbs and then spread to other parts of the body. This is the more common type of ALS. The other type is bulbar onset. The bulbar symptoms involve difficulties using the tongue, speaking and swallowing. People with limb onset will usually develop the bulbar symptoms and vice versa. But this speed and severity of the symptoms can vary. At present, I can speak and eat normally. My main problem is muscle weakness. Every muscle below my neck is weak.
Ultimately, ALS patients may die because they are too weak to breathe. Some people will use a breathing tube to help extend their life, but some choose not to. Some choose to take Rilutek (riluzole), a medication used to treat ALS. It's very expensive and may only extend one's life a few months. So, some people choose not to take it.
Some ALS patients are participating in drug trials or are going to other countries for experimental treatments. And others choose alternative therapies - combinations of drugs, supplements, massage, and other treatments. ALS affects people differently and how people handle their life and treatment is also very different.
For people who don't have ALS, it's not really a thing you should worry about. It's very rare and you are not likely to get it. But I hope that people will think about those who have ALS, or other diseases or disabilities, and do things to help make their lives better. Hold a door open, let a disabled person in the elevator before you, or make your place of business accessible to people with mobility issues. It's not fun when you can't use the restroom because it means you will have to go up and down stairs and that's just too difficult for you to do.
And what I've learned from all this is: you should plan for the future but living for today. Be happy with what you have, and grateful for your health and welfare, safety and security.
And even if tough things happen, you have to keep on keepin' on.
You can see other ALS stories via these links:
- CNN: Sharing the burden of ALS (high school lacrosse coach Mickey Beard)
- Cincinnati.com: To get married, they left Ohio (an ALS patient and his same-sex partner travel out of state to get married)
- USAToday: Steve Gleason provides most inspirational moment of NFL draft
- TLC: My Mother Is Not Doing Well (Cake Boss's mother diagnosed with ALS)
- CBS Minnesota: Striking Out ALS (Minnesota Twins battle ALS; former Twins 1B Kent Hrbek's father died of ALS in 1982; touching story/video about a young man diagnosed with ALS at 24-and who died at 29)
- NFL.com: Steve Gleason's triumphs over ALS shown on 'NFL Films Presents'