This is a beekeeping blog, I know. But I sometimes write non-bee stuff. Once a year I go entirely off-topic and write a bit about our annual Calgary ALS fundraiser, Betty’s Run. Thank you for indulging my digressions.
I have motor neuron disease, sometimes called ALS (amyotrophic lateral sclerosis) or Lou Gehrig’s Disease. Lucky for me, my motor neuron disorder is atypical ALS, which means it’s not the typical fast-paced disease. Instead, mine has a much slower progression. Normally, ALS paralyzes within two or three years. All motion – walking, talking, breathing, everything – stops. Unless the afflicted chooses a respirator, feeding tube, and constant nursing care, the patient dies. However, the brain is unaffected.
Using assists like ventilators and aides is how people such as Stephen Hawking survive. His ALS started early (he was 22) and progressed more slowly, but he has equipment and full-time nursing help. Mine started at age 44 so I’ve been living with my variant of motor neuron disorder for almost 20 years. Mine is progressive – I can’t walk much any more and my arms and hands are weak, but that’s not too bad after 18 years. It will continue to get worse, but if the progression remains slow, I’ll be blogging for many years to come.
No one knows why my form of motor neuron disease is so unusually slow. A friend asked me if all those thousands of bee stings I’d had over the years made the difference, but other beekeepers I’ve known (commercial beeman Ernie Fuhr from the Peace River country, up near the Yukon; and, Bill Turner from our own Calgary Bee Club) were both killed by this disease. Recently, a group looking at alternative treatments for ALS reviewed bee venom and found that it was unlikely to be helpful. You can read about this investigative group here and the bee venom report is at this link.
Betty’s Run was on Sunday, June 12 this year. Not long after Betty died of ALS years ago, some of her friends met, and decided to honour her memory and raise awareness and funds to fight the disease. This year about 1,500 people participated as walkers and runners. They raised $400,000 for ALS research and to help the organization that provides support (vans, motorized wheelchairs, in home care equipment) and outreach programs. During the 20 years of Betty’s Runs, nearly seven million dollars were raised here in Calgary. The walk/run/roll has become a social event with friends meeting and chatting. I was happy to have my wife (who is an organizing volunteer for the local ALS society) and my four kids and three grandchildren on today’s walk. For the smallest kids, the bouncy castle was the main draw. For us older kids, walking 5 kilometres (or being pushed in a chair, as I was) gives an opportunity to think about people and the illness. Most participants wore tags that said things like “I’m Here for My Wife” or “I’m Here for Jim”. My tag said “I’m Here for Everyone” as a reminder that everyone is affected, directly or indirectly by this illness.
As I said earlier, today’s beekeeping blog doesn’t have much about bees. But I want to thank my friends Willi and Stan who run a honey packing business in Madison for their huge financial support for this year’s fundraiser. These guys have been my friends since my early beekeeping days, 40 years ago. As they have done for the past decade, they contributed to Betty’s Run once again. Their Wisconsin packing company – Pure Sweet Honey Farm Inc – was one this year’s two Silver Sponsors, which means they are big supporters of this event.
If you are reading this and thinking that you should help, too, you can find a local organization that does what our Alberta ALS Society does. You probably know someone who has died from motor neuron disease. The disease remains incurable, untreatable, and poorly understood. It can affect anyone, any of your friends or family, so please donate to your local ALS charity.
I’ll close with two more pictures from today’s event.