Living with MS can mean giving up a lot. MS affects each person differently and the symptoms can make a significant impact on a person’s lifestyle. Diagnosed with chronic progressive MS in 1988, Bob didn’t have a lot of options. The only advice he was given was: “if you’re planning on building a dream house, make sure it’s a ranch-style.”
“When I was diagnosed, they didn’t have anything at all for progressive MS. They did a spinal tap and an MRI and that was it. I went back to work and didn’t have any reasons to go back to the doctor for another 10 years,” says Bob. “The experience was rather worrisome. We didn’t have access to a computer or Google. The only information I had on MS was my wife’s old nursing book which had a paragraph or two in it about the disease.”
Living with MS presents its own unique set of challenges as the symptoms can vary greatly from person to person.
“My symptoms have gradually gone downhill over the years,” Bob explains. “Every year, my mobility gets a little bit worse. I went from walking with a cane to having to get a brace for foot drop, to using a walker and then a scooter and then a manual wheelchair and then a power wheelchair. Every year, my mobility decreases a little bit.”
With mobility challenges come unexpected changes. “After I got my scooter and wheelchair, I suddenly realized that I couldn’t go anywhere. Everyone I knew had a house that I couldn’t get into. I couldn’t visit people like I used to. I couldn’t even go to my son’s house for dinner. The lack of accessibility changed my life and shifted my relationships.”
Even though mobility is a large part of how MS has affected Bob, he is more concerned with how the disease has affected his independence. “A recent challenge has been my ability to transfer [from my bed to my wheelchair] by myself. My day is much more regimented now for me and my wife who has to help me in the morning. I used to be able to do a standing transfer, but I can’t do that anymore. Prior to this year, my wife could go off on holidays and I would be perfectly fine here alone. I could get out of bed and do whatever I wanted to do. I was totally independent. Now, I am much more dependent on somebody to get me out of bed and put me back at night.”
Bob continued to work as a heavy-duty mechanic after his diagnosis until the work became too difficult with his symptoms. He then refocused his career goals and went back to school to learn computer programming. He worked in the industry for 10 years before he went onto long-term disability.
“When I finally went on long-term disability, my wife suggested that I start volunteering with the MS Society. I went to the Edmonton chapter and ended up sitting on a couple of committees with the city. From there, volunteering sort of became my job,” Bob reflects. “I went to an MS Society support group for years and then joined the Edmonton chapter council. After six years, I decided to join the Alberta Division council and I have been volunteering ever since,” says Bob.
Bob also volunteers with a variety of committees and councils including the MS Society’s Government Relations committee, the DATS advisory group, and the City of Edmonton’s committee on recreation for people with disabilities committee. Bob’s passion is for advising people with diseases like MS on how to plan for their future. He often educates people with disabilities on how to use public transit and how to plan for an accessible home.
“I’ve been able to help a lot of people, especially with learning about different disabilities and how the environment needs to be set up or changed to help them. It’s been great to help people out with making their home work for them,” he says.
Despite all that he has given up because of his MS, Bob has spent much of his time giving back to his community. When a disease like MS takes so much, it’s important to recognize people like Bob who give so much back. Bob’s life has been shaped by MS in many ways, but it’s not all negative.
“A lot of people look at MS and they look at all the things they lost, but I look at it in all the ways that I have changed,” Bob explains. “If it wasn’t for MS, I never would have gotten into computer programming. I never would have gotten involved in volunteering. I never would have done any public speaking. If you asked me before I was diagnosed with MS to speak in front of an audience, I would have said not a chance. I’ve learned so much since I was diagnosed, so it hasn’t all been negative.”
From volunteering to advocating to spending time with his family, Bob’s act of greatness is giving back to those around him. MS has taken a lot from Bob, but it has also given him a voice that he uses every day to stand up for himself and his community.
Like Bob, Canadians everywhere are performing Acts of Greatness in the fight against MS. Help fund acts of greatness that can change today for those living with or affected by this debilitating disease. Together, through actions big and small, we can change the future. Join the movement at www.actsofgreatness.ca.