Becker Muscular Dystrophy: Through the Eyes of Nancy Jackson

NancyJackson-blogI was born November 13th, 1961 in Smith Falls, Ontario. For the first seven years of my life, I was a healthy little girl who enjoyed playing and could not wait to attend school. Then, at age seven, I was diagnosed with Becker muscular dystrophy –  a progressive, muscle wasting condition. Here is my story.

                My grade one teacher, who had a daughter born with muscular dystrophy, saw the signs. In many ways I was like every other kid my age, but I was slow in sports, I would frequently trip and fall, and I had trouble getting up from a seated position.  I was sent to see a specialist at the Ottawa Civic Hospital, who did a muscle biopsy on my right leg and determined that I have Becker muscular dystrophy.

By the time I entered high school, walking was increasingly difficult, but I was determined to keep going without a wheelchair. I would leave each class five minutes early, so I could beat the crowds in the hall to avoid getting bumped into and falling over. Believe me, some days those school halls seemed a mile long. Stairs were becoming a struggle, so the school arranged for my classes to be on the main floor in the morning and on the second floor in the afternoon.  After I graduated from high school, I went on to study computers at Smith Falls Alternative School.

Over the years, as my condition progressed, my family has had to made adjustments to our home. For example, when I was unable to climb stairs, a stair lift was installed so that I could reach the second floor. It was only a few months later that I would lose my ability to walk, and began using a manual wheelchair. When I no longer had the strength in my arms to move the manual wheelchair on my own, I transitioned into a powered tilt chair. I was surprised and delighted by the sense of freedom and independence that came with using the power chair!

As my muscles continued to weaken, it became increasingly difficult for me to get into and out of my wheelchair. My occupational therapist recommended some further home modifications – a ceiling track lift to help with transfers, as well as changing the stair glide to a platform lift to allow me to reach the second floor while remaining in my wheelchair.

Becker muscular dystrophy causes muscle weakness throughout my body: not only are my legs and arms affected, but also my breathing muscles. I no longer have the strength to breathe or cough on my own.  I rely on a ventilator, which is mounted on the back of my wheelchair during the day so I can get around.  I was prescribed a CoughAssist to help me clear mucus and prevent respiratory infection. Thankfully, Muscular Dystrophy Canada was able to help me obtain the CoughAssist (which is not covered by my provincial health care program).

I feel very fortunate that I am still able to live at home with my mom. My siblings live nearby, and my nieces and nephews are my strength each day. I have the most amazing home-support workers, provided through Ontario March of Dimes. I am so grateful for the care and support I receive…by my true circle of friends.

Sadly, Nancy Jackson passed away September 13, 2013.  Her obituary can be found online.

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