What do you do when given a truckload of lemons? Why, you make the best possible lemonade you can, of course! Let me put this statement in context.
I was diagnosed with ALS in December, 2022. The following is the story of how I got to my diagnosis and what I am doing to turn that truckload of lemons into the best lemonade possible!
What Happened to a Herniated Disk?
I’ve had back pain, on and off, for many years. In the spring of 2022, along with my usual back pain, I started having issues with my right foot, along with ‘twitching’ in my right leg and arm. My left hand would also periodically shake or tremor. I went to see my family doctor about these symptoms. He diagnosed me with drop foot and referred me to a neurologist for testing on a suspected herniated disk and possible pinched nerve.
In August 2022, after my first neurologist appointment, and after thinking I was about to be told I had a herniated disc, the neurologist gave me a probable diagnosis of Amyotrophic Lateral Sclerosis, or ALS, with signs of Parkinsonism and said I had 2-5 years to live with progressive decline before death. Did I have any questions, he asked? What??? Yes, LOTS of questions. My wife and I came in thinking I had a herniated disk and now we’re being told I have ALS with 2-5 years to live? How could this be?
Lots of Tests… and Questions
After our many questions and a few more tests, I was then referred to Toronto’s Sunnybrook Hospital ALS Clinic for more in-depth testing and assessment. In December 2022, after four months and several tests later, I received confirmation that I did, in fact, have ALS along with an additional diagnosis of Parkinson’s disease.
When the neurologist at Sunnybrook Hospital gave me my diagnosis, he explained that it is very difficult to determine a length of time of progression due to the lack of information and research. In other words, even though this disease has been known for over 100 years, there is still very little research about it. What is known is that symptom progression proceeds at a relative steady state, so the best gauge will be ongoing monitoring of progression to guide treatment. In addition to the lack of information and research, there are few ALS-specific medications and those that are available are very expensive.
Given this news I turned to my wife and had only one question, “What kind of lemonade are we going to make with this truckload of lemons?”.
Since my diagnosis, the staff at the Sunnybrook ALS Clinic have been great in providing care and support and answering all of our questions (we ask a lot of questions).
What Happened when I Shared My ALS Diagnosis
As I started to share the news of my diagnosis with others though, I had the following reactions:
1) people knew what ALS was and the devastating effects it can have on both the patient and their caregivers;
2) people have heard about ALS and know a little about the disease, but not much, often thinking there is a cure or treatment available to get better; or
3) people have no idea what ALS is.
Having experienced these reactions, and reading about the need for more research and support to assist ALS patients gain access to programs, services and/or life-extending medications, I started to put together the recipe for the “kind of lemonade I was going to make”. My lemonade will provide a channel to raise funds and provide awareness to support the following: ongoing ALS research, advocacy, and patient & caregiver support to ALS-related programs & services throughout the community.
What is ALS?
ALS is a rare disease affecting approximately 2,500-3,000 Canadians living with ALS and approximately 1,000 Canadians being diagnosed every year. Approximately 1,000 Canadians die from ALS every year.
ALS Canada[1] describes the disease as follows:
Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.
ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.
ALS is a disease with no cure. It is also a disease that many people do not really know about or understand as it is also difficult to diagnose since symptoms may mask as other diseases. As a result, diagnosis typically results through a process of elimination of other diseases. More research has been done within the last 10 years than the last 100 years due to events such as the ALS Ice Bucket Challenge, but there is still a long way to go to raise awareness and funds.
My Lemonade Recipe
As a patient recently diagnosed in the early stages of ALS I ride my exercise bike every day to stay fit and maintain mobility, so why not put this to good use and include it as my main ingredient? With that, I have started a fundraising program that I am calling the ALS Virtual Mobility Challenge. This Challenge will be a ‘long-term’ event undertaken over the course of the year, where I will cycle on an exercise bike the equivalent distance of the TransCanada Highway – approximately 7,500 kilometers – from Victoria, British Columbia to St. John’s, Newfoundland.
Each week, I will do a new blog post highlighting my progress and how I am doing. As well, I will be hoping to also do podcasts where I will spotlight programs and services offered in various areas across the country that provide supports to ALS patients, caregivers and their families. Interviews will be conducted, as able, with program providers, healthcare providers, caregivers and patients to bring awareness of ALS to the public and generate support for the programs and services offered. I will also write a blog describing my own journey with ALS.
I have set up a fundraising page for the ALS Virtual Mobility Challenge with ALS Canada for people to:
- Make donations
- Set up and participate in their own ‘Mobility Challenge’
- ‘Challenge’ others to register for their own virtual ride
Those registering for their own virtual ride can then ‘challenge’ others to either donate or do their own rides, thereby increasing the potential for additional fundraising opportunities.
Funds raised will go to support the following:
- Increase funding and support for more ALS research, advocacy and support for patients & caregivers.
- Bring awareness to the general public regarding ALS, what it is and how to provide support to ALS patients and caregivers.
- Identify available programs & services available to both patients, caregivers and their families, such as:
- Exercise and rehabilitative programs
- Home care services
- Mental health supports
- Provide ALS patients, caregivers and families with a platform to share and voice their experiences.
Through this fundraising, the aim is to increase the body of knowledge on ALS and help contribute to a better quality of life those dealing with this disease, with the goal of one day creating a future without ALS.
I am looking forward to you reading as I share my ALS Journey and my progress with my ALS Virtual Mobility Challenge, and hope this will both provide you with greater awareness of ALS and to participate in your own Mobility Challenge.
My ALS Challenge 
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