David Cartwright, like his twin brother, has spinocerebellar ataxia type 6 (SCA6). David immigrated from England to Canada when he was 21, where he met his wife. He used to play many different types of ball sports and water sports. However, his journey with ataxia has also shown him the benefits of less intense workouts and exercising the mind.
When I was asked to write a personal blog it started me thinking about what could I say. Many thoughts popped into my head including my early life, family, career, travel, and of course Ataxia as well as lesser aspects of my life.
I was born in 1942 and grew up in England before immigrating to Canada in 1965. I have a twin brother and another one who is 4 years younger who also has SCA6. It was common in the ’50s to leave school at 16 which means I had been working for 50 years before retiring. I lived in London remembering the bomb shelters, bombed-out buildings, and air raid sirens. It was not until my early 30’s that I shook off the fear of hearing a fire siren here in Canada.
I immigrated as a young single 21-year-old lad, however, it was not long before I met a young lady named Nancy whom I married in 1967. After 4 years of married bliss, our son Kevin was born, and a daughter Melanie 2 years later. I coached both my son and daughter on their soccer teams and enjoyed camping with them during the summer months. We took them on summer trips in Canada, the US, and the UK. Once they went away to university we started cruising to South America, Hawaii, Tahiti, Australia, and Southeast Asia. We still plan to travel once covid is over.
I also participated in many sports including soccer, cricket, golf, tennis. At times, I would enjoy windsurfing, white water rafting, dog sledding, even snorkeling on the Great Barrier Reef to name a few sporting challenges, so it was a surprise when I was finally diagnosed with SCA6 at the age of 66. I had an inkling around my mid 50’s, something was different especially when I continually missed an easy forehand playing tennis. At other times I would suddenly stumble on a flat piece of grass, only to realize it was a slight indentation most people would never notice.
After a few years of increasing frustration playing tennis as well as golf and forever stumbling, I visited my doctor who made an appointment to see a neurologist. She conducted an evaluation on my condition and then suggested I have specific blood tests. In 2008 I was officially diagnosed with Ataxia, even though I could walk normally and did not have any balance problems. That lasted for a few years until I started to rely on a cane. I had given up tennis long ago and was struggling with golf however at age 65 I finally had to put my clubs away.
My ailment is quite mild compared to other people I’ve seen on the Ataxia website, however, I do use a cane all the time now and am restricted to what I can do and where I can go. I am very fortunate that I don’t have any pain, nor do I take any meds, however, SCA6 has really impeded my normal lifestyle. I try various exercises, with one being Standing Pilates. It helps with my balance and leg strength. There are many videos to choose from on YouTube. I also use a treadmill and a stationary bike, however in the summer I ride my trike which enables me to be outside in the nice weather. When I get tired, or if it’s late in the afternoon I start to slur my speech.
As I am unable to be very active physically I have resorted to exercising my mind. I read a lot, am involved in a men’s book club, writing my bio, and transferring all 40 years of slides digitally to my laptop. The slide conversion is long and tedious as I have to place only 4 at a time onto a template which then transfers the pictures to my laptop. After that, I have to record the people or view and the year it was taken before saving it to a specific file. I use an Epson V600 Perfection color scanner if anybody is thinking of managing this task.
People with Ataxia are continually explaining to friends and acquaintances what they have. In my experience I relay all the normal explanations i.e. hereditary, succumb to the disease at any age, affects walking, balance, and sometimes double vision; however, I’ve shortened the explanation to saying “it’s similar to MS”. With that description, my friends appear to understand and are satisfied knowing what I have.
Over the time I’ve known I have had Ataxia I’ve learned to exercise. It does not involve strenuous workouts, but simple things such as walking upstairs, walking outside with a cane, or using a walker just to try and strengthen the legs. Another simple exercise is sitting in an upright chair and then rising out of it just a few times at first before is slowly increasing the number of sit-ups. This will also help to strengthen your legs and help your heart but only do this on doctor’s orders.
I’ve learned to live with Ataxia although it took me some time to adjust. I can still get around either with a cane or a walker. It’s what I’ve been dealt with so I make the best of it.
Thank you David Cartwright for sharing your story and workout suggestions!
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