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Rare Disease Day 2015

Jeff and his wife Heidi

Jeff and his wife Heidi

February 28th is Rare Disease Day.  As a person who was diagnosed with a rare disease close to 40 years ago, this day is very important to me and to thousands of other Canadians impacted by one of the over 150 neuromuscular disorders supported by Muscular Dystrophy Canada.  At the age of 10 months, I was diagnosed with Spinal Muscular Atrophy Type 1 (to be re-diagnosed as Type 2 later in life).  SMA is the world’s leading cause of infantile death; I bet you didn’t know that!  Forty years later, I’m still kicking and have no plans to slow down.  This is one of many reasons why days such as this, to raise awareness and provide education, are so vital to our health, well being and ability to be full and active participants in our communities.

Thanks to the work of Muscular Dystrophy Canada staff, volunteers, healthcare professionals, family members, researchers, caregivers and Fire Fighters, in the areas of support, education, advocacy, financial assistance, information delivery and medical research, people living with neuromuscular disorders are living longer, more enriched lives.

We all face challenges in our daily lives, but some of us face more than others.  Days like this which provide education and awareness, help to build knowledge within the general community and the community of those who are impacted by rare diseases and are key to promoting the importance of supporting organizations and people who are impacted, as well as maintaining healthy lifestyles and providing strategies to enhance independence!

Here are just a few examples why I feel Rare Disease Day is so important:

  • People are living longer…… this has a huge impact on our healthcare and social service sectors.  People are being faced with illnesses that come along with aging.  Having a disability complicates this and our healthcare providers need to be able to think outside the box and work in partnership with families and organizations such as Muscular Dystrophy Canada to develop strategies to manage these illnesses.  I was hospitalized for six weeks this past summer and if it wasn’t for my knowledge of how to take care of myself, I’m certain that my stay would have been much longer and my recovery would have been significantly more challenging.  Not only did I manage my recovery more effectively because of my knowledge, I also had a huge impact on the knowledge and understanding of the healthcare professionals who supported me during this difficult time.
  • Breath is vital to life…… Many professionals are unfamiliar with the challenges associated with respiratory care and neuromuscular disorders.  People who are impacted, their family members/caregivers and professionals need to be familiar with respiratory health protocols.  I personally have known several people who have gone into comas and worse because of inappropriate respiratory interventions.  Check out Muscular Dystrophy Canada’s Guide to Respiratory Care for Neuromuscular Disorders
  • People with disabilities are more than just their wheelchair….. Community members at large need to see the person first and what they have to offer.  If this happens, people with a variety of challenges will be more included in their communities; they can work, go to school, volunteer and even hang out at a local night club if they wish.  People just don’t understand what it takes to include people (the cost is actually minimal).  For example, I was recently married and am able to have a full and normal relationship, including all aspects (physical, emotional, spiritual and financial).  I also work full time and volunteer in various community roles.  Not only is highlighting these successes and obstacles important to the community at large, but also to people who are affected by disability in order to show them that their goals are achievable.
  • It is important to support smaller non profit and charitable organizations….. We all know someone who is impacted by one of the diseases that has high prevalence in our country and tend to support those same organizations over and over again.  These organizations should continue to be supported as they do great work, but it is my wish that people support smaller organizations as a percentage of their giving.  Every little bit helps and small organizations can deliver a huge bang for your buck, whether it be in research or service delivery.
  • We all need to work together….. As our diseases are so rare, we need to work hand in hand to provide direct peer support, networking opportunities, raise awareness, educate each other and our community and raise funds.  To learn more about how you can help yourself while helping others, visit www.muscle.ca

As you can see, there is so much that we can all do to raise awareness of rare disorders.  Take action today and help build a supportive community around you!

 _____________________

Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down.  

Jeff Sparks on Traveling with a Disability

Cruisin in the Carribbean

Cruisin in the Carribbean

Traveling is something that many people enjoy, but unfortunately, many people with disabilities feel that this is out of reach, due to accessibility challenges and people just not understanding.  Having lived with a disability for close to 40 years, I can guarantee you that this is not the case and that you all should make an attempt to travel.  There will be challenges to overcome, but trust me, it is worth the effort.  There is so much out there to see and do!

Over the last few years, I have had the opportunity to travel to Europe, New York City and taken four Caribbean cruises as vacations, and have traveled across our great country in my staff role with Muscular Dystrophy Canada.  Having recently heard three close friends of mine, Ken Kramer, Yazmine Laroche and Garrett Cumming speak of traveling with a disability at the 2014 Muscular Dystrophy Canada Empowerment In Action Conference, I became inspired to write a blog post to encourage everyone who is faced with a disability to empower themselves and see what is out there beyond our borders.

I want to provide you with a bit of advice and personal perspective, but I don’t want to repeat what has already been said.  I recommend that you visit the following link to get some great pointers on traveling with a disability.

http://muscle.ca/living-with-muscular-dystrophy/travel/

Paris Lock Bridge

Paris Lock Bridge

So, what else can I share, since I wrote the article above?

First of all, my stereotypes about countries beyond North America not being accessible enough to visit have been corrected.

  • During my Caribbean cruises, I’ve had the opportunity to visit about ten small countries.  Although it took some research to coordinate, I was able to ensure that my ships actually docked at the ports so that I could get off the ships and see the beautiful cities and countries.  In most places, I was able to book private excursions/tours.  I did most of this myself as many of the trips organized by the cruise companies are not accessible.
    • Advice – Research tour companies and wheelchair accessible taxi companies on the internet and contact them yourself.  Make sure that they define accessibility the same way you do.  Will their lift safely support the weight of you and your wheelchair and is there enough head clearance to get you in the vehicle?  Even try calling the local tourism bureau or Canadian Consulate.  In Antigua, their local rehab centre provided me with their van and driver for a tour at no charge.  Hey, it never hurts to ask!
  • Cruise ships rock!!!  The staff are always willing to help and accommodate.  Dietary restrictions were met to a T.  Accessible rooms have lots of space and roll in showers.  Some ships have lifts to get you in the pools.  There are no steps anywhere on the ships where there is not a ramp.  Although there is an extra cost, you can rent medical equipment such as hospital beds and lifts.
    • Advice – Make sure you are very clear on your needs when booking your cruise.  Ask about accessible excursions.  Confirm that your ship is docking at ports and not tendering (where you take a small boat to get to land).  There are some travel agents based in the US that specialize in booking accessible vacations.  You can give them a try, but I always like to be in control of my own destiny.
  • New York City is a beautiful place.  I’ve seen it and won’t be going back.  Most cities in the US have a huge number of accessible cabs due to the ADA, but as with many big cities, there is also a huge demand for taxis and you often need to wait.  I had a great experience getting the train in to and out of the city and took a great accessible cruise around New York where I got to see all the sites, but the long waits and difficulty in getting taxis was a little frustrating.  Having patience is a requirement to living with a disability, so if you want to see the awesome city, go for it!
  • Europe is a great place to visit.  I recently went to Germany, Amsterdam and Paris for my wedding and honeymoon, and would recommend that you visit.  Koblenz, Germany – the home of my wife Heidi – is so beautiful.  I was totally amazed when I visited the downtown core, which is 600 years older than my town, to find that every business had a ramp to get in.  Obviously, the cobblestone and brick sidewalks in most European cities makes for a bumpy ride if you are in a wheelchair, but we experience that in Canada too.  I was nervous flying a discount airline, knowing how well Air Canada takes care of me, but was totally impressed and would say that the service and accessibility was better than I’ve experienced at home.  I was even able to rent an accessible van for the trip, which you cannot do in most Canadian cities.  My wife was even able to find an independent living facility that was fully accessible to rent us a room during our visit.
Statue of Liberty with my Cousin Steve

Statue of Liberty with my Cousin Steve

Those are just a few highlights of what I learned and would like to share from my recent experiences traveling outside of Canada.

In addition to what advice was shared in the aforementioned link, I’ve also had some recent lessons learned from my own travel and from the awesome session at Empowerment In Action.

  • Make sure all your needs are documented fully with the airline’s medical desk.  I had a recent flight delayed because the flight attendant would not let me use my travel pillows and chest belt to support and secure me during the flight.
  • Although I’m too anal to do this, sometimes you make out just as well by flying by the seat of your pants.  If you are the type that doesn’t like to overly plan, take a risk and you may find you make out just as well as a planner like me.
  • Plan your travel companion/attendant well.  You are going to want to have fun together and not necessarily consider their whole trip to be work.
  • When you are faced by a challenge and need some help, it doesn’t hurt to use your “poor me” face.  You might even get bumped to the front of the line.  All kidding aside, being politically correct, we all need help in one way or another and it doesn’t hurt to ask.
  • Air Canada and WestJet now do not charge for advanced seat selection if you have a disability.  Both also have lifts to help you get on and off the plane.
  • If you have access to the funds, fly first class!

Well, that is all I have to say for now.  My closing piece of advice is to not be afraid of traveling.  There is so much out there for you to enjoy.

 

Planat has a great blog post about airport travel tips for those using wheelchairs, here.

Overlooking the Rhine River

Overlooking the Rhine River

______________________________

Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down. 

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