The nature of cycling is such that it’s a natural fit for charities. Ride a distance, get sponsored, raise funds and awareness… it’s simple. And it’s very common. Numerous good causes exist and thousands of people are riding bikes in order to gain exposure for numerous causes and/or illnesses as well as get revenue. We have published stories about some of these but one in particular is close to my heart: the efforts of Ian Davis and his cohort who have been highlighting the plight of people suffering from MND. In February 2013, he wrote a story for RIDE that explained the condition he was diagnosed with at the age of 33.
Recently a campaign instigated by the late Corey Griffin and others, dubbed The Ice Bucket Challenge, has gone viral… all in the name of raising funds for MND (or ALS, as it’s often referred to in the United States). Finally funding is pouring in and awareness about this terrible illness is rising. This latest campaign has prompted us to publish Ian Davies’ story online as a reminder of what MND is all about…
Below is a flashback from RIDE #59 in which Ian Davis explains MND.
Please read it and share it and help him and his friends push on with the work they’re doing. Why? Because you still can!
Above: Bill Gates demonstrates the Ice Bucket Challenge…
* * * * *
Why ride? “Because I still can…!”
(Originally published in RIDE Cycling Review, February 2013)
Considering his plight, Ian Davis is enormously upbeat. He suffers a terminal illness that affects many. Despite its devastating effect, there simply “isn’t enough profit to be made” for biotech companies that might be able to help find a cure for Motor Neuron Disease. And so he’s riding his bike one million metres to try and change that…
– By Ian Davies
When I was first asked to write this piece, I had a long and hard think about the real reasons that I will once again physically ride a bicycle. This question, although seemingly simple on the surface, proved a lot harder for me to address than I could ever have expected. Nevertheless, after several days of searching, I have come up with three main reasons. The first and most obvious answer to that question is simply because I still can! I may no longer be able to ride the same sort of bike that I used to, but the most important thing is that I still can. Okay, I will now use my arms to pedal, but the point remains: I still can. On a more deeply personal level, the second reason that I will ride again is because I must. Because I owe it to all those that can no longer ride themselves, to all those who will follow me.
These reasons may seem like an odd way to begin this article and I will elaborate further later, but the most important thing to make clear is that I have Motor Neuron Disease (MND). I am 34 years old and a little over one year ago I was told that my life expectancy was two to five years. And this brings us to the third reason I will ride again: because the time left for me to do so is running out.
I still remember the first day I realised that something was physically wrong with me. In retrospect I consider this as the worst day of my life. It was at the beginning of my ever-evolving, gradual, and involuntary surrender to this disease. At the time I was a healthy 33-year-old doctor working on a busy cancer ward in a Melbourne hospital. My whole life and dreams lay ahead of me, but during one of my routine daily ward rounds – a day not too dissimilar to any other – I initially became aware of a problem with my left foot.
I had the early signs of “foot drop” – the esoteric but overly simplistic term the medical fraternity give to weakness in the muscles that we all use to lift our foot off the floor. With each step I took I could hear a faint slapping noise as my left foot fell unopposed to the ground. What came immediately next is probably no surprise to many of you, but like the average 21st-century male, I told myself it was nothing. A pinched nerve. I had slept funny. ‘Ignore it and it will go away’, I told myself. Only it didn’t go away. It remained. Something was wrong. It would turn out that I was dying.
The next week I approached a colleague at work, a neurology specialist. Within two days I had undergone a large battery of tests. I had nerve conduction studies, a muscle and nerve biopsy, a lumbar puncture, a panel of blood tests, and a whole brain and spine MRI.
All MND patients ultimately understand that each element of this diagnostic medical armamentarium is aimed at finding an alternative diagnosis – anything besides MND. You see, the diagnosis is one of exclusion, one in which all other possibilities are initially ruled out leaving only the worse and most devastating diagnosis remaining – MND. Often these tests are inconclusive or non-contributory at first, leaving sufferers to languish for months or years with an almost perfunctory title of “possible” or “likely” MND until time makes the diagnosis clear. That’s the one thing that is inevitable with MND; time will tell with this disease.
By the time I saw the neurologist to learn the results of my tests I was certain I had MND. In the preceding days I undertook an extensive literature review searching hopelessly for an alternative diagnosis. There was none. The first and then the second neurologist confirmed my fears.
Motor Neuron Disease was originally described by the French neurologist Jean-Martin Charcot in 1869. In the US and Europe the disease is more commonly known as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease, named after the New York Yankees baseball player who ultimately succumbed to the disease. It has been 72 years since he famously proclaimed himself to be “the luckiest man on the face of the earth” in front of a packed Yankee stadium shortly after receiving the diagnosis. Seventy-two years on and, as a doctor, I am embarrassed to say that from a practical point of view for all of us now living with MND, little more is known about the cause of the disease, and perhaps more frightening to myself is that no truly effective therapy is on the horizon.
MND is a progressive neurodegenerative disease.
It’s a gradual and ruthlessly relentless imprisonment, whereby a stepwise accumulation of disability leads to an inevitable reduction in independence.
In the simplest terms, the disease attacks and kills the motor nerve cells within the brain and spinal cord, essentially destroying the means by which messages from the brain and spine are sent to control all the body’s voluntary muscles. When they are gone, the muscles atrophy and die, taking with them our ability to move forever. The disease marches on, trapping the sufferer within his or her own body, until the muscles that control breathing die, leading to a gradual suffocation and ultimately respiratory failure and death.
Throughout this my mind and intellect will remain unaffected, and I will bear witness to it all.
At the moment the disease is predominantly in my legs. I have a left leg brace, and use an elbow crutch when walking more than a few hundred metres. I know the disease is spreading, and the muscles constantly twitch and cramp in my arms, back, and neck. Occasionally food gets stuck and I have painful choking episodes and esophageal spasms. So far breathing isn’t an issue – so far. You see why I must ride now, while I still can. While I still have time.
The incidence of MND, the number of newly diagnosed patients, is similar to another more well-known chronic neurodegenerative condition: Multiple Sclerosis (MS). In real world terms, every day in Australia one or two people will be diagnosed with MND, compared to around three to four per day with MS. The stark difference between these two diseases, however, lies within their respective prevalence in Australia (prevalence denotes the number of people already diagnosed with the disease taken at any one point in time).
In Australia, there are approximately 1,400 people living with MND, thus the prevalence is around six per 100,000 people. In comparison, around 18,000 to 22,000 Australians are living with MS (a prevalence of around 80-100 per 100,000 people). The obvious question therefore is that, despite the fairly similar rates of new diagnoses, why are there nearly 15 times more people living with Multiple Sclerosis compared to Motor Neuron Disease at any given time? The simplest reason is a consequence of differing disease biology between the two, with the average life expectancy for patients diagnosed with MND being 27 months compared to the normal life span expected for most newly diagnosed MS patients.
MND is in general a more aggressive and rapidly progressive disease compared to MS. The second reason for the differing prevalence for me is perhaps the most frustrating; MND has no truly effective therapies to prolong life; MS has multiple.
Despite MND being given an “orphan disease status” by the FDA in the USA, little advancement in the search for an effective treatment has occurred. The only drug on the market is largely ineffectual and prolongs life expectancy – or time to needing a ventilator to breathe – by about three months. I take it. I’m not sure I really want to prolong the back half of this disease though, and I take it in the hope of slowing progression.
This orphan disease status is set to entice new drug companies to pursue new treatments into rare diseases such as MND, and allow these drug developers leeway in regards to statistical analysis, potential tax incentives, and enhanced patent protection and marketing rights. Although seemingly a good thing, drug developers are slow to get on board. As stated, people are diagnosed with MND at nearly the same rate as other more well-known and researched neurodegenerative diseases, but the fact stands that we don’t live long enough to create a big enough financial burden on the hospital system. There are therefore no financial incentives for governments or pharmaceutical companies to pursue these new “orphan drugs” when other more common and lucrative conditions such as hypertension or even the big “C” word (cancer) exist. There simply isn’t enough profit to be made.
Cynical I know, but nevertheless it’s the truth. This brings me to the other reason I mentioned as to why I ride. I will ride because I must. I will ride and pedal with my arms because my legs are too weak. And I will ride to raise awareness, to raise funds for research into the cause of the disease, and I will ride for research into finding a cure. If the government and pharmaceutical companies will not invest their time or money into my disease, then I will. I must.
Fortunately for me, however, I am not alone in this battle. I have gained much wisdom, passion, and encouragement by the battles being waged by many other sufferers against this disease. One person who touched me early after my diagnosis, and during one of my darker days, was Scott Sullivan. He is a fellow MND sufferer, a father, and an absolute hero.
Sullivan has founded the MND and ME Foundation, and strives to raise funds for research and awareness of this disease. I owe this man a lot, and together the two of us will ride once again as one whole man. Unlike myself, Scott’s MND has weakened his arms and his hands. His legs are currently unaffected, and thanks to a customised recumbent tandem bike built by Greenspeed, we plan to ride one “Million Metres for MND”. Scott will use a rear leg crank while I myself pedal and steer with a front handcrank mechanism, and together we will cycle the 1,000km from Brisbane to Sydney starting out during national MND Awareness week in May this year.
We aim to raise awareness and funds for this disease along the entire course of our journey, with all profits going to the MND and ME foundation. We are both aware of the magnitude of the challenge we have set ourselves, but while we still can, we must ride. We owe it to ourselves. We owe it to all the other MND patients currently living with this disease who themselves cannot ride, and most importantly, we owe it to those who will be diagnosed with this disease after we are gone. That is why we ride.
Please help us and join in raising awareness and funds for Motor Neuron Disease in Australia by visiting our site, following us on Facebook and Twitter, and by donating through our Everyday Hero page.
– By Ian Davis