Walk for Muscular Dystrophy Ambassador: Edmonton

Cedric-Edmonton Ambassador 2013Cedric was born on June 1st, 2010.  He lives in Edmonton with his parents, little sister Rosie and his dog Otis.  Cedric has Duchenne Muscular Dystrophy, a medical condition that causes the muscles to become weaker over time.  Cedric shares this diagnosis with his great uncle, two uncles and a cousin.  Only Cedric and his cousin are still living.  There is no cure but Cedric has been seeing a specialist at the Glenrose Hospital every year since he was 6 months old.  His parents help to stretch his calf muscles and take him swimming regularly.  He sometimes gets frustrated when his muscles can’t keep up with him.  Stairs are a challenge so he crawls up with his little sister or needs to hold someone’s hand.  When he gets tired, he trips and falls more easily.  He has trouble running as fast as other boys his age and when he tries to jump, only his heels get off the ground.

Although his body may have physical limitations, he still knows how to have fun and is a very smart boy.  At 3 ½ months old, he started attending public library programs.  He went to last year’s Car Show at Northlands Park with his parents.  He enjoyed sitting on his Dad’s lap in the drivers’ seats as they pretended to be race car drivers.  He attended an Edmonton Eskimos Football game in August of 2011.  Besides enjoying all the sights and sounds, he quickly made friends with those sitting around him, which isn’t hard to do with his good looks and cheerful personality.  He has enjoyed vacationing with his family, either in Mexico or at the family cabin in the mountains.

Cedric is also eager to help with chores around the house, like watering the plants, turning on the dishwasher and helping to load the washing machine.

He took part in last year’s Walk for Muscular Dystrophy for the first time.  Many family members and friends supported him by either helping to raise money or by attending the event too.  Last fall, he attended the Family Retreat at Camp He Ho Ha in Seba Beach.  He loved playing with the other children he met and felt very comfortable around their wheelchairs.  Cedric visited with the fire fighters during the Rooftop Campout this year and helped to lift their spirits.  He is an inspiration to us all!

Tips and Tools for self-advocacy

ADVOCACY – “Tips and Tools”

(Adapted from the Advocacy Tool Kit published by Muscular Dystrophy Canada.)

advocacy selfThe most important thing to remember when advocating for yourself is that YOU are your BEST advocate. You may not realize it, but you are already an advocate for yourself in many ways. Have you ever felt that it was in your right to do something or receive something you need, and then gone and done something about it? Well that is advocacy.

There are many ways to advocate for yourself but below I am going to outline a few tips from the Advocacy Tool Kit created by Muscular Dystrophy Canada.

Before you begin your journey as an advocate, the incredibly important first step is to start by knowing and understanding your rights as an adult. You may have had family members/care givers/health professionals advocate on your behalf, but now that you are an adult it is important to begin the process by knowing your own rights. You will then become more responsible and in control of your own path. In addition, it is also vital to know your needs. The better you understand your specific disability, the better you can communicate the information you need to advocate. Last, but not least, effective communication is an essential skill to advocacy.

To be a successful advocate it is beneficial to take a look at what strengths and skills you have and use these skills to your advantage in a creative way! As you go through your process it’s important to be constantly re-evaluating what you are doing to make sure you are on the right track and that you are not losing sight of why you are doing this. Always stay positive and connected to your goal even if you have to try a few different routes to get there.

Advocacy success photoBelow is a 4 step strategy that may assist in the process of advocating for yourself. Advocacy can be a long and complex process. This may not be the only solution, but it is a good place to start in order to help organize your thoughts and process.

STEP 1 Define problem

Be clear, concise and accurate in making a statement that informs people of “what the issue is”

STEP 2: Develop a plan

Ensure you have a clear plan with easy to follow steps, to ensure you can monitor progress and make changes if needed. An essential part of developing a plan is also to have a support network around you.

STEP 3: Carry out the Plan

Take action; You must also be willing to listen to others and negotiate with them to resolve your issue or concern

Step: 4 evaluate the results

Look back at your plan and ask yourself what worked and what didn’t.

*Make sure you are always documenting your progress (ALL meetings, emails/phone calls etc).

Everyone should be able to live the life they want, with the support they need. A key element that will assist with this process along the way is to stay positive and to celebrate your successes big or small. Not only are you advocating for yourself, but what you have gained along the way may be a stepping stone for someone else. If you need help, don’t be afraid to ask for it and most importantly stay positive and remember that YOU are the greatest advocate because YOU know yourself the best!

Kendal Gerus is a MuscleFacts and Bridges to the Future coordinator in B.C.

Helen shares her story and her thanks

Hi everyone!

HelenSparkyPaulMy name is Helen Ma. I’m a twelve year old who spends most of my time with my nose stuck in a book or with my eyes glued on to my mother’s Ipad (Angry Birds is always a very pressing matter). I live with my over protective mother, my under protective father, my grandparents who answer every phone call with “my English not good” and my two younger siblings who have a lot of attitude packed into a small package. I also live with this slightly annoying, thorn at my side, pain in the butt thing called Spinal Muscular Atrophy, or SMA for those of you who are too lazy to write the full name.

SMA is a neuromuscular disorder covered under the umbrella of muscular dystrophy. Muscular dystrophy affects many people around Canada. Sure, muscular dystrophy is hard to live with but some of the best moments in my life would have never happened if I didn’t have SMA. Zip lines, ferry rides and Disney World experiences were all thanks to SMA, and the people who help support those who have it.

Disney World is always a magical place, especially when you get to skip all the walking, hiking and long line waiting. Imagine arriving at a beautiful, castle-like hotel after four hours on a plane watching old movies, breathing in the fresh Orlando air and watching the palm trees sway and the flowers bloom. Now imagine that as a seven year old. I was so overwhelmed by the sheer sight of everything from the exotic looking animals and plants, to the warm weather in April. I was shocked. Then the next day we arrived at Disney World. I remember seeing the castle looming in the distance, the tallest towers hidden by the clouds. I felt determined to reach the castle, as determined as a seven year old could be. But unfortunately I never did reach the castle, probably because I stopped every five seconds to ooh and aah at famous characters, charming buildings and over priced souvenirs. The best memory of this trip was meeting Snow White’s evil stepmother. I know you’re all thinking “why would a seven year old enjoy meeting her?” well the truth is I didn’t, not at the time at least. The reason this is my best memory was because I just visited Snow White before I saw Snow White’s mother, I remember her asking me “Did you see Snow White? Tell me if you do.” My seven year old self vigorously shook her head, protecting her favourite princess from her doom. Looking back on that now I laugh at how scared I was. The point of me telling you this long, elaborate and detailed memory was to say that without SMA I would never have been granted a wish by Children’s Wish Foundation. I never would have gone at all. Even if I did I would have been stuck waiting in long lines, walking for miles and standing on my tippy toes to try and see over a crowd. These magical seven days are one of the best memories of my childhood. Just because I’m in a wheelchair, just because I can’t walk or run, jump or crawl doesn’t mean I shouldn’t seize every opportunity presented to me.

One opportunity that I just couldn’t pass up was zip lining at the annual Muscular Dystrophy Family Retreat. Before you decide that I’m crazy and stop reading let me tell you that it was amazing (and completely safe)! The speed, the wind and the view is just all so spectacular and breath taking. I remember getting strapped in with (not my parents they were too scared) a nurse. We went down together at incredibly fast speed, the wind tousling my hair and stinging my eyes, bringing on tears. Trees blurring into one another, fierce orange, bright red and smokey brown trucks. The lake sparkled in the distance. It was just as magical as Disney, only faster and a whole lot cheaper. As soon as it was over I was craving for more, unfortunately one heart attack was enough for parents. That didn’t stop me from going again two years later though.

The last thing I’m going to share with you today is about the ferry rides I take every other year, when the MD Family Retreat takes place in Camp He Ho Ha. The ferry rides are one of the things I look forward to most. Chatting with friends while the clean, misty lake water sprays my face. I enjoy this time because it’s both exhilarating and calming. The gentle movement of the small ship riding on the waves that are as crystal blue as the crisp autumn sky. The dock fading in the distance, leaving nothing but a faint smudge brown, a promise of land ahead.

These precious moments couldn’t have been possible without many of the generous people who have donated their time, effort and money to help kids and adults just like me. I’d like to thank Children’s Wish Foundation for granting me, and many other kids a wish, a dream come true. Without them I would never have been to Disney, never have seen Snow White and her mother and all those other characters that make it such a magical place. I’d also like to thank Muscular Dystrophy Canada who organizes so many activities and fundraisers every year. Especially the annual camp, in which I experienced the thrill of ziplining and the calm, gentle rock of the ferry boat. Last but not least I’d like to give a warm, virtual round of applause to our hard working firefighters. These funny and friendly firefighters help out at every camp, every Walk for Muscular Dystrophy, every year. They also camp on the roof of their station for a week to raise money for MD. Did I mention it’s in the dead of winter, with freeze your butt off cold temperatures? Thank you to everyone who’s donated money, one hundred dollars or just one single loonie. You’re making a difference!

Thank you everyone for making our lives just that much better!

Tips to stay healthy during flu season

It’s flu season, and everyone is on the lookout for germs they’re hoping to avoid.   Most people recover from the flu in about a week. However, influenza may be associated with serious complications such as pneumonia, especially in those with neuromuscular disorders and other chronic health conditions.

Tips to prevent the flu:

fluProtect yourself by washing hands thoroughly with soap and water, using hand sanitizer, and keeping common areas and shared items clean and disinfected.  Try to avoid contact with people who have colds or the flu. One of the best ways to prevent the flu is to get the flu shot.  Check with your doctor before obtaining any vaccine, especially if you’re affected by myasthenia gravis, polymyositis, dermatomyositis, or taking immune-suppressing medications such as corticosteroids (e.g. prednisone, deflazacort, prednisolone).

Symptoms of seasonal influenza may include the following:

  • fever
  • cough
  • sore throat
  • body aches
  • chills
  • fatigue
  • diarrhea and vomiting also may be experienced

Contact your physician as soon as possible if you develop flu-like symptoms.

Muscular Dystrophy Canada’s A guide to neuromuscular disorders contains information about common respiratory illnesses that can stem from the flu (see page 70).

Bronchitis

Bronchitis is an inflammation and irritation of the bronchial tubes in the lungs characterized by a cough. Viruses, bacteria, environmental irritants such as cigarette smoke, or allergies may cause this condition. In response to the inflammation, airways secrete a sticky mucous. If a person is unable to produce an effective cough to clear the lungs, there is a risk for developing pneumonia. If you do get a fever with thick discolored, or bloody mucus coughed from the chest, or if you notice that the mucus has changed from clear white to yellowish, tell your doctor immediately. These could be symptoms of a respiratory infection that could lead to pneumonia.

Pneumonia

Pneumonia can be caused by bacteria or viruses, and may be a complication of a cold, flu, bronchitis, or aspiration.  Pneumonia causes the very small air sacs in the lungs (alveoli) and surrounding tissues to fill with inflammatory cells (pus) and mucous which prevents the normal exchange of O2 and CO2.

For more information:

Where to get the flu shot?

What is the flu?

How to fight the flu?

The Diagnosis and Management of Duchenne Muscular Dystrophy: A guide for families (page 33)

Muscular Dystrophy Association’s Flu Season Resource Centre

Get informed and stay healthy this season!