Today, June 21, the world observes the Global Day of recognition of ALS/MND.
In honour of that, I thought I would help raise awareness by sharing some facts with you that some of my friends and family have been surprised by.
- MND stands for Motor Neurone Disease and has the same meaning as ALS. MND is used in Europe and other parts of the world, while ALS and Lou Gehrig's disease is used in North America. Kind of like how Travis says "boot" instead of trunk, or "jumper" instead of sweater!
- Though we often hear that about 3500 Canadians are living with ALS at any given time, I find that number to be misleading, in fact 1 in 400 have a lifetime risk of developing ALS (ALSTDI). The more recent research suggests 1 in 300 (MND Association of England and Wales)! It is a much more common disease than people realize. The reason the number of people living with ALS seems relatively small, is that they die so quickly, within 1-5 years. Think of that the next time you travel, more than likely some of those people on the plane or train either have ALS or are likely to be diagnosed with ALS.
- "Roughly 3,000 Canadians live with ALS, and because it typically moves at a furious pace—killing half of all patients within 18 months of diagnosis—most people don’t realize that its incidence rate is as high as multiple sclerosis." (Macleans)
- ALS is being diagnosed at a younger age than you might think. I know this to be true as I was diagnosed at 41. That may seem old to Millennials but not to me (you will find that I am quite immature as well)! "Although it usually strikes around age 55, doctors report that patients seem to be getting younger, for reasons they don’t understand. They’re increasingly encountering ALS patients in their twenties, thirties, even in their late teens." (Macleans)
- ALS is the most common cause of neurological death in Canada. (ALS Society of Canada)
- The speed of progression of neurodegeneration varies from person to person, my progression is considered "slow" by my neurologist. Often "bulbar onset" of ALS has a quicker progression and death as symptoms first appear in speech and difficulty swallowing. My form of ALS is "limb onset" as it seemed to start in my left foot. Fortunately for me, I am still talking (some might say too much, who me???), though I have noticed that my speech does slur when I am overtired (or drank too much wine).
- Someone is diagnosed with ALS every 90 minutes. (ALSTDI)
- People may go years living with symptoms of ALS before they are diagnosed. People who know me often believe that my first symptoms were in February of 2013 (diagnosed September 2013) when I was no longer able to skate on the Rideau Canal. Looking back, I remember the summer before not being able to ride my bike out of our parking garage. I had to get off my bike, walk it up the incline (which was not very steep), then get back on to ride. It makes perfect sense now why I couldn't ride my bike out of the garage like I used to.
- Despite what you may have heard, in my opinion there is NO TREATMENT for ALS. Yes there is a drug called Rilutek (Riluzole) but it might extend your life by about 3 months and at that stage, paralyzed and bedridden, why? Sounds crazy to me. Also, Edaravone (Radicava), which is approved by the FDA in the US and is currently under priority review by Health Canada, is not a cure, nor does it improve symptoms of ALS. It is said to reduce progression by 30%, however, due to my work in the mental health field, I understand clinical trials very well. The six month clinical trial in Japan studied 137 participants, half of which are on placebo, and all within early stages of onset. Progression was measured using the ALS Functional Rating Scale. I fill out the ALSFRS every few months. It has 12 questions with a possibility of 5 answers for each. It asks about handwriting, turning in bed, walking, etc. I find it to be quite subjective as I am always asking Travis which response I should choose. I might have a better ALSFRS today than I did 3 months ago if I'm having a bad day, or am overtired, or have a cold.
If you are living with ALS it is important to discuss the use of Edaravone with your physician as these are simply my opinions and I can be known to be cynical, skeptical, or a realist, however you prefer to frame it! My neurologist stated that as my progression is already slow, we would never know if it is actually working or not.
- Medical Marijuana can be an effective treatment to ease symptoms of ALS including muscle cramping, fasciculations, insomnia, loss of appetite, depression and anxiety. There is evidence that cannabinoids may be beneficial as neuroprotective agents in ALS. Click on the following link for an article citing the study published by the National Institutes of Health: Can cannabinoids be a potential therapeutic tool in amyotrophic lateral sclerosis?
- In all cases, ALS is fatal. (Project Mine)
- Finding a cure for ALS is not hopeless. We have made more progress in the past 5 years in terms of new research discoveries than in the past 100! The momentum is building and we are on the verge of being able to offer hope to people living with ALS.
- ALS is not an incurable disease. It is an underfunded one.
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.
Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.
Why 21 June?
June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.
Join the fight… Spread the word
Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
Ways to spread the word:
Use the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media!
- Celebrate international partnerships and collaborations that make us united in the worldwide fight against ALS/MND.
- Show your support for the Fundamental Rights of people living with ALS/MNDby reading and sharing this advocacy tool.
- Hold a fundraiser for your local ALS/MND association.