Hello, and welcome back! I was recently invited by the Muscular Dystrophy Association to be a guest on a Facebook live with a couple of other experts in the field of adaptive recreation. I was honored to be asked, but one of my first thoughts was, am I really an expert? Then I thought, well, I guess I am as much of an expert as anyone, as I have 47 years of experience! I wanted to share what I had written out for the live. I think I left a little bit of this information out during the live when I was speaking, as it is hard to remember absolutely everything I wanted to say, so here it is……
I am a married mom of two boys who are 14 and 17. My
husband and my boys are all 3 avid runners. We have a very active household, and I do my best to keep up with my part!
I was first
introduced to exercise when I was very young through the form of swimming. It was a form of exercise that doctors told my parents
would be safe and effective for me in maintaining my muscles as well as I
could. As I got older, I joined a swim team, and while I was not very
competitive, it kept me exercising, and my muscles working the best they could.
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| Always loved the water! |
Doctors had
told my parents that I would likely not be walking for long. They were
determined to keep me walking as long as possible, and I was determined too. I
also was fortunate enough to be able to ride a two wheel bike when I
was younger. I rode it all of the time which I’m sure helped a lot with
my muscles. I had a desire to be very active, and I was. In college,
I continued to want to eat healthy and exercise. I took an exercise
class, and learned how to lift weights. While I couldn’t lift much, it was
another way that I could keep my muscles as healthy as possible.
My driving
force to adapt to different exercises and activities
that keep me moving, continues to be the desire to keep walking as long as I possibly
can. That is so
important to me. My disease is slowly progressive, so as I’ve gotten
older, I have had to use a scooter some for getting around if I’m overly tired, and also for going longer
distances. At this point, I continue to be able to walk more than I use the
scooter.
My main form
of exercise now is an underwater treadmill in my small therapy pool
at my home. It is the type of pool where you can swim against a current,
so I am able to swim and run in the water. Before we had this
installed I had never run before. My son who was 12 at the time taught me how to run because I didn’t even know how! After 44 years in and out
of physical therapy, my husband and I decided to bring something
into our home that I could safely and easily access and use almost daily
to stay active.
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| My happy place |
Physical therapy can be
expensive, and visits are often limited by insurance companies.
They like to see lots of progress to justify continuing therapy
visits, and I wasn’t ever fitting that profile because I never showed massive improvement because of my MD. I would be released
from therapy for that reason, every time. I have had fantastic results with
this underwater treadmill. I wish more rehab centers would install them
for more people to use. I think it would be very beneficial! They are a safe
and effective workout for those with limited mobility.
Another form
of adaptive recreation that I have tried is skiing in CO. We were on a family
vacation, and wanted to take the boys skiing. I assumed that
I would just be a spectator, but the the lady at the Airbnb where we
were staying told us about an adaptive ski program which just happened
to be about 10 minutes from the house we were staying at. That is
a day I will never forget. I only wish I had more than one day to ski. They
packed as much training into that one day as they could, and it was
just exhilarating to fly down that mountain. I felt so free, and my 4 instructors were angels on earth!
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| I had incredible adaptive ski instructors! |
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| Learning to use the poles, which were also small skis. |
A couple of other things I like to do are hike and ride my 3 wheel bike. I can’t ride a two
wheeled bike anymore because of severe osteoporosis in my hips. It’s too much of a risk if I were to fall. I love challenging
myself on short hikes.
I use hiking poles, and have special leg braces I wear while hiking. My next
thing I would like to do is adaptive paddle boarding and water skiing!
Team Momentum:
My husband
is a marathon runner, and he was set to run the 2019 Boston Marathon
after qualifying on his own. A few weeks before the marathon, I
learned by chance, about Team Momentum somehow through
looking on Facebook. We connected with them and he was able to join Team Momentum for that
marathon. While we were in Boston, we went to the expo before the
marathon, and they had a booth that had an adaptive running
chair. My husband had seen one before, and was interested in pushing me
in one. We were able to try that chair out and learn a little about it
while we were there. We then started asking Chris Marshall, who is Team
Momentum’s national director about the running chair, which we
actually call a duo bike. Chris was able to locate a chair that a man and his
wife, who had ALS, had purchased and actually used for another marathon. She unfortunately passed away. He generously had donated the duo bike to MDA. A couple of other families
had used the chair for races, but it happened to be available,
so Chris said, hey if you want to drive to Chicago and pick it up, you could
start training for the 2019 Chicago marathon as there is an available spot for a duo bike team. My husband
Jamie had thought we would start out small and maybe do some 5k’s
together, but he had to decide if he could do his second marathon in
a year, while pushing the duo bike. He decided he was up for the
challenge, so we started training for the marathon.
We trained together during his long runs every Saturday morning as the sun was coming up.
We started in July, and the marathon was in October. Training
together was an incredible experience, and we truly were a team. Again,
like the skiing, it is just a fantastic experience to feel the wind in
your hair, and I can almost feel like it’s me that’s running.
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| Chicago Marathon 2019 |
The crowds
at the Chicago marathon were incredible! We had several family
members and friends who made the journey to cheer us on as well,
including my younger son. The duo bike allowed me to complete my first ever marathon! Since then, we were gifted our own duo bike by a
very generous donor, so that was amazing! Now another wonderful
team momentum family has the other bike, and their son is getting to
experience adaptive running with his dad! Oh the stories that bike could tell!
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| The Chicago crew! Meant so much to us for them to be there! |
Obstacles:
There have
been so many obstacles to staying active along the way. One, it is just
physically very hard, so you really have to just do the best you can with what
you’ve got, and try to just keep going, even if it’s just the smallest
thing. Gyms aren’t really set up with people with disabilities in mind, so
that was always challenging, which was another reason to bring it
into my home. I was able to modify it and adapt it to fit my needs.
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| Sitting on my therapy table, so I don’t have to get on the ground for stretching |
Unfortunately,
the world we live in doesn’t always accommodate those with disabilities.
In some ways it’s getting better, but there will always be obstacles. I’ve had to be creative in staying active, and adapt in a way that
works best for me. I will continue to
push through these obstacles with humble courage in
order to keep exercising, staying as active as I possibly can. I
feel that is the key to keeping my independence, which is so very
important to me. I am looking forward to what’s next for me in adaptive recreation, and continuing to challenge myself to stay as strong as I can. Keep pushing, keep fighting! 💚