Bill was the kind of kid who loved to take things apart and figure out how they work. As an adult, he became a Marine Engineer Surveyor, living in rural Australia. One of his passions was being a pilot and he would seize every possible opportunity to fly. Bill would often take off before dawn and fly to 5000ft, where he would wait for the sun to rise. “The ground below would still be in darkness and I could watch the sun rise. There is no better way to greet the day!”. Bill hasn’t flown since 2005, but he’s never lost his deep appreciation of that amazing freedom, even as he lives with the pain of Inclusion Body Myositis (IBM).
Solving problems has become a required skill for Bill to maintain the freedom to stay active and independent. IBM is a progressive disease and presents obstacles and challenges daily. “But you can’t live in cotton wool to avoid risks.” So, Bill calculates his risks and takes some chances. He will walk on some suitable surfaces and tries to maintain as much activity as he can handle, despite falls. Bill knows every movement (that used to be automatic) requires concentration to maintain control and balance. “This disease is a very frustrating thing, and my mobility and the ability to do anything with my hands is degraded a little more each year.”
Life will continue to throw curveballs at Bill as his IBM progresses. He knows he must remain open-minded and tolerant of the perpetual daily challenges he faces. Remaining active and interactive is key, as is his good sense of humour.
How did you come to own your pair of SideStix?
I have Inclusion Body Myositis. It is an incurable muscle wasting disease that attacks the leg, arm, hand, and throat muscles. I was diagnosed 15 years ago and, as a result, am unable to stand unaided. I can only walk with crutches for short distances on paved surfaces. There is no known treatment, however, regular exercise can slow the onset of final incapacitation. My last fall was catastrophic, breaking my left leg and shattering my knee. Doctors said I would not walk again, but after eight months in hospital, and with much help from two physiologists, I have now learned to walk for the third time.
I purchased my SideStix about 5 years back, and was immediately impressed by their light weight, and the safe feeling they gave me. I went on to purchase the Sandshoe decks for beach use. I definitely believe I could not have learned to walk again without my SideStix. I have also benefited from the new FinGrips.
I can only admire the way other crutch users perform athletic feats, and travel cross-country on their SideStix. For me, my movements must be strictly controlled and pre-planned before going out. I have little medical knowledge, but here is my considered analysis as a systems engineer: We humans learn to walk, jump, and run at a very early age, and the balance and movements required become automatic and stored in our subconscious memory. We can do all these things without the need to think. However, with muscle strength at about 15%, the limbs are unable to respond to the normal automatic signals from memory. I must consciously send “verbal” instructions in my head to signal each movement required. This means that if I am momentarily distracted while moving even for two seconds, the limbs will not respond in time to prevent a fall!
Also, if I allow my thoughts to wander, then the subconscious will try to issue normal command signals to the muscles concerned, which cannot respond – hence an almost certain fall! Thus my friends know not to try and converse with me during transit. This process involves constant mental planning of the vectors required to place each limb as required, which is quite mentally tiring by the end of the day!
What is your idea of a perfect day?
I learned to fly back in 1952, in Tiger Moth and 7AC aircrafts. In those days, the pilot market was filled with returned servicemen, so I joined the navy instead. In later years, flying became my passion, and I retrained for multi-engine aircraft. I spent many happy days exploring the Australian outback, and learnt acrobatic flight.
In past years, I was known to get up before dawn, get in the aircraft, and be waiting at 5,000 or 6,000 feet for the sun to rise. You could look at the ground below and it would still be in darkness. This would send me off to work with a clear head and a great buzz, which could last all day.
What are your passions?
I think I first became an engineer at the age of 5, and I have always had a great need to understand the science and principle of all things manmade. Now that my dexterity is limited, I am only able to continue my understanding by reading, so that is my passion now. I try to stay abreast of technology in all things.
Do you have any advice for other crutch users?
My comment would not be relevant to everyone, but here are a few rules for me:
1) Concentration is required. Keep well-meaning helpers at arm’s length, unless you’re in real trouble.
2) Never lean out or stretch for something that is just beyond reach. Take an extra step closer instead.
3) Be extra careful on any downgrades. It is so easy to find your body over-speeding with your vertical centre of gravity falling outside of the support line of your legs.
4) Do not do things on impulse while in transit. Stop and consider direction changes or altered destinations before proceeding
5) Learn to use the weight of an outstretched limb as a counterweight to initiate a direction change. Even a few pounds can make things easier!
How do you find the motivation to stay active?
This disease is a very frustrating thing, and my mobility and the ability to do anything with my hands is degraded a little more each year. I had always had an active life, which is now curtailed, but it is not good to be housebound. I attend the local hospital for physiotherapy once a week, and have an exercise bike and other equipment at home. We also go on shopping excursions, and try to eat out with friends once a week. I forsake the wheelchair when the terrain is suitable, and try to exercise in short doses. I can manage up to 500 meters walking with SideStix on flat surfaces, but must be careful not to use up the limited reserve of energy available.
I must stay motivated because the alternative is to become a vegetable. Fortunately, I am reasonably healthy in all other aspects, but you can’t live in cotton wool to avoid risks. I am very impressed with my SideStix. I feel very confident on them, particularly on rough ground. I had been on the standard type aluminium side type for about five years, and wore out two sets! What I used to call my “scaffolding” have now become known as my “wings”.