The Importance of Education and Advocacy for Respiratory Care

TWD 1In October 2010, Jeff Sparks and Tracy Ryan arranged a presentation on respiratory health with a respirologist in St.John’s, Newfoundland and Labrador. At the time, the presentation was a revelation to clients and staff at the Janeway, who had not heard a great deal about the importance of breathing aids, and respiratory health. Following on that initial presentation, communication was maintained with the Janeway clinic staff on the topic; one of the clinicians subsequently attended the workshop given for healthcare professionals by Dr. John Bach in Halifax in the fall of 2012.

Muscular Dystrophy Canada and March of Dimes held Health and Wellness Information Days for people living with a disability, on October 24 2013 in St. John`s. One of the key components was a workshop on respiratory care by Vital Air. The staff at Janeway not only took part in this initiative, but promoted this event as well. The day turned into a great forum for connecting persons with a disability, caregivers, and professionals on key issues. With lively discussions, and passion, it is evident that there is a need for more advocacy, and spaces to bring together people on disability issues whether it be respiratory care, or transportation.

All of these initiatives have led to ongoing communication and with the help of Janeway, has made a difference. The clinic coordinator, Jeanette Ivey, had long advocated for a respirologist, and a respiratory technician to be included as part of the clinical team. This past year, that has indeed happened, but the Janeway team has taken it a step further. When we visited the neuromuscular clinic in October 2013, we learned that they have organized patient visits so that those who are at the staff of needing respiratory support attend clinic on the same day. That change in approach ensures the patients can be followed more closely, and the respirologist will have more dedicated time with them. They have also integrated respiratory health more generally into all neuromuscular patients’ monitoring and care plans. Finally, they have been advocating with patients to gain them access to breathing aids such as cough assist machines.

While we can’t claim credit for all these changes, there is no doubt Muscular Dystrophy Canada has played a role in the Janeway Clinic’s integration of respiratory health into their clinical practice for people with neuromuscular diseases.

Fifteen Years of Volunteering: Profile on George Brinton

George in the officeGeorge Brinton is one dedicated, self-less individual. He has been volunteering with Muscular Dystrophy Canada for over 15 years in our Vancouver office. Over those 15 years, George has certainly seen a lot of changes and growth within the organization, but his reason for volunteering remains the same – help in anyway he can to help find a cure for muscular dystrophy.

“Just because you have a disability, doesn’t mean you can’t contribute to society. If everybody did a little bit to help, it would make a big difference.”

Back in the late 1990s, George decided to be more involved in the organization as he himself has FSH Muscular Dystrophy. George helps out around the Vancouver office with preparing materials for events and  stuffing envelopes among other things. At conferences and regional Walk for Muscular Dystrophy events he helps with registration, provides inspiration… you can always spot George with his Canadian flag flowing behind him off his wheelchair.

Alyssa Goad who works in our Vancouver office says, “George volunteers in our office twice a week, every week!  We honestly could not do it without George’s help, he does all our mailings, data base clean up and brightens up our office with his smile.  Volunteers are integral to all organizations big or small, we can not thank volunteers enough for everything they do!”

Jubilee medal

Last year something very special happened. George was recognized for his many years of volunteer service for Muscular Dystrophy Canada by being awarded a Queen’s Diamond Jubilee Medal. Receiving his medal amongst the Fire Fighters and Muscular Dystrophy Canada staff has been his favourite moment during his 15 years with us.

In addition to his great work with Muscular Dystrophy Canada, George also lends his time to the Salvation Army during the holiday season so that he can help even more people. When asked what he would tell others who are thinking of volunteering George responded,

“Do it and you will enjoy it. The best thing that could ever happen to me is to volunteer.”

Thank you George, and to all our wonderful volunteers who have given so much of their time over the years!

Family takes pride in being role models

Shabotovsky Family

The Shabatoski Family

Team Shabby has participated in the Saskatoon Safeway Walk for Muscular Dystrophy for six years. The Shabatoski family is at the centre of Team Shabby, including mom Jackie, dad Dean, Braiden, 21; twins Samuel and Emma, 10; and twins Tyson and Jackson, 7. Braiden, Samuel and Tyson are affected by Duchenne Muscular Dystrophy.

In 2013, Braiden was the Saskatoon Safeway Walk for Muscular Dystrophy Ambassador.  This was an honour for the family and a great way to include all the family’s friends in their Walk for Muscular Dystrophy efforts. Braiden takes his responsibility as role model seriously, especially as a role model to his two younger brothers. Braiden loves hanging out with Samuel and Tyson, encouraging them to keep their spirits up and enjoy life. He is around to answer their questions and help them through any struggles they may have. Braiden is dedicated to being available to his brothers, and raising awareness through the Walk for Muscular Dystrophy.

Team Shabby participates in the Walk for Muscular Dystrophy because it is important to them to raise money to eventually find a cure for neuromuscular disorders. They also put great emphasis on raising awareness. Jackie Shabatoski explains “before Braiden was diagnosed, we had no idea what muscular dystrophy was. We just want our sons to be treated respectfully, and that only happens when there is a level of understanding and empathy.”

The Shabatoski family is supported by their extended family every step of the way. Dean has four siblings and Jackie has three.  The whole family shows up to each Saskatoon Walk for Muscular Dystrophy event. Family friends came out in larger numbers this year to support Braiden. Team Shabby grew to about 50 members this year.

team shabbyPart of the team’s plan is to fundraise leading up to the Walk for Muscular Dystrophy event.  In April, Team Shabby hosted a rib night fundraiser. The supper included a silent auction, raffle items and 50/50 draw. Over 120 community members, friends and family came out to support the event.   A comedian friend emceed the fundraiser and performed improv. All the auction items were donated by the community. One woman donated a hand stitched quilt with a history of Clavet/Saskatoon depicted. Ottawa Senator Jared Cowen, who is from Allan, SK donated a jersey. There were footballs signed by Saskatchewan Rough Riders including Mike McCullough, were also auctioned. The rib night raised $6,800, and Jackie’s mother fundraised $2,000 at a other fundraising  in Humboldt, SK.

The family’s favorite part of the Walk for Muscular Dystrophy is meeting new people and getting together with friends and family. After the Walk for Muscular Dystrophy, the Shabatoski’s invite the team back to their house for a barbeque and social.

Jackie says, “we get to enjoy being surrounded by those who mean the most to us. I love to look around at everyone visiting and enjoying each other’s company. It makes me count my blessings to have such a strong support system!”

BC Fire Fighters in full gear to raise awareness

fire fighter finishThe Nanaimo Safeway Walk for Muscular Dystrophy started out simple. Dwain King, my co-chair from the Central Island region of the BC/Yukon Fire Fighters Advisors group decided that since Victoria was the only current Walk for Muscular Dsytrophy event on Vancouver Island he would organize one a little farther north. We immediately jumped on board to support Dwain. I somewhat mistakenly sent out an email to my entire address book (over 500 recipients) and was overwhelmed with the immediate support I received in the form of donations to complete the 5 KM walk.

3 km FFI figured I had better raise the bar since I was nearing $1,000, so I announced if I fundraised $1,000 I would complete the Walk for Muscular Dsytrophy in full turn out gear, which is Fire Fighters protective clothing consisting of coat, pants, boots and helmet, adding a weight of approx. 25 pounds.

Well I surpassed the $1,000 mark so figured I had better step it up a notch! If I could reach $1,500 I offered to wear the SCBA (Self Contained Breathing Apparatus) on my back, which accounts for an additional 32 pounds. Walk coordinator Dwain King from Ladysmith Fire Rescue took it one step further saying that if he raised $2,000 he would complete the Walk “on air”, which means he would walk the entire 5KM wearing the Fire Fighter mask and breathing only the air from his self contained breathing apparatus carried on his back.

Fire fighters 3KMMy sister, Cathy Ferguson King (no relation to Dwain) who is a true competitor and a true advocate for Muscular Dystrophy Canada, stepped in and said if she raised more than Dwain and I, she would ALSO complete the Walk in full turn out gear with an SCBA and ON AIR! The difference being Cathy is NOT a Fire Fighter! She does not normally wear this gear and has never used a self contained breathing apparatus.

Well she did it!! She raised more funds than Dwain and I, and the end result is that all three of us completed the entire 5KM Walk in full gear and on air.

The on air portion of the challenge was to set a level of difficulty that isn’t done by the average person and to say that we were willing to push ourselves to new limits in order to raise awareness and funds for Muscular Dystrophy Canada!

P1040666Point being the ever increasing dependency on respiratory assistance for those affected by neuromuscular disorders. We challenged ourselves to complete a physically demanding event while relying on only supplied air; however those with repiratory challenges rely on such systems on a regular basis. It is an opportunity for us, and others, to realize what they  go through on a day to day basis and realize that we take for granted the simple things in life. We challenged ourselves for two hours; our friends affected by muscular dystrophy do this daily!

The Nanaimo Safeway Walk for Muscular Dystrophy was not only a success in fundraising, but a success in awareness and self reflection. I had no right to say this was going to be difficult or too much of a challenge to complete because we were fortunate enough to be able to walk and breathe for those who can’t on their own.

Team Party Hardy total raised – $8,500!

Cam Ferguson  is the Deputy Fire Chief, Cowichan Bay Fire Rescue; Chair – BC/Yukon Firefighter Advisory Committee; and Firefighter Co-Advisor, Central Vancouver Island.  

Find Something to Care About

Nov Ivana  Before getting involved with Muscular Dystrophy Canada, I spent a year volunteering with the Canadian Cancer Society. I have heard stories, and met individuals that have truly inspired me to push, and fight harder. Just like MD, cancer has many problems with no solutions; answers, but no short cuts. There are a lot times where you find yourself frustrated, and emotionally challenged. There seems to be too many obstacles to overcome, bridges to build, and barriers can be found around every corner – but sometimes within the midst of all that, you find something that makes it all worth it.

The world has proven itself to be full of unexpected twists, and turns. What is important is that we never stop believing, and we never forget the things that are worth holding onto. Mastin Kipp said it the best, “Being of service, and taking the wounds of your life and turning them into lessons, and sharing your experience with others will do more good to you and the world than almost anything else.” I have learned that having an illness is in no way a weakness or means that I am failing. You want to know the biggest reason people fail? The biggest reason goals don’t get accomplished? It is not because they aren’t smart enough, or pretty enough, or strong enough – it is because people make excuses, and sometimes they don’t even start to try. Sometimes you start, but then you just stop. Distractions get in the way, and one day becomes one week, and then one week becomes one month, then a year… then before you know it your life has gone by. There are endless opportunities, and rather than taking them, we like to stay comfortable. Can I blame you? Who doesn’t like being comfortable? Being uncomfortable causes us to feel nervous and anxious, however, being comfortable means you’re not reaching your highest potential.

After taking that year with the Canadian Cancer Society, learning everything I could, I felt like I had a fighting chance for the first time to battle my own illness. I saw what drives people, what pushes them, what inspires them, and what gets them involved. The answer is not sitting back, and expecting results to happen. I have no idea where I will go with creating awareness or fundraising for LGMD2A, but I believe I found my first step. Coalition for Calpain 3 is an organization founded in 2010 and its purpose is to find a cure for LGMD2A. Both founders have this progressive disease, and share the same goal as I do in ending this disease. If you want to check it out please use this link: (http://www.curecalpain3.org/). Use your resources, and most importantly, use your potential. If we want to see an end to this disease, it starts with us.

We can’t plan everything that happens in life. We win some, and we lose some. That is just the way it goes. As I sit here I hope my words empower you to not stay in the state of suffering if you are. I know life isn’t fair sometimes, but you must risk failure, you must risk losing, you must risk everything all your life if you want to achieve anything. LGMD2A is one of the easiest MD to cure, and this fact alone makes me believe that if we all do something, progress will happen. I believe that we all have to step up, and do something about this disease not just for ourselves, but also for each other. If we all helped to create something, amazing things can happen. I hope after reading this you donate your time, efforts, and energy towards a cause much greater than yourself. I hope you create a powerful message to the world, and I hope whenever you find what you are looking for, you live within it.

You can dream as big as you want. There are so many quotes I come across on a daily basis about dreaming big, and doing what you are afraid of. No, I do not mean saying hello to that big spider on the floor kind of doing what you are afraid of – I am talking about being afraid of the possibility of failure, and even the possibility of success. The fear of trying.

This is me pushing you, this is saying that you have the potential to turn your life around. Here is your chance. Individuals who are the best at what they do are the ones who have gone out of their way to do more than what is required of them. Maybe that means getting up, and working towards your goal(s) while everyone else is still sleeping. Maybe that means feeling short term pain for long term gain. Maybe it means standing tall when everyone else is laughing, and telling you it isn’t possible. There are reachable goals out there, pursue them. What you are going to do each and every day is what makes your year, your being, and your life. What you do does matter. Your life is your life. All I ask is that you make the most of it, that you create your own path and that you enjoy every second.

“When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bonds: Your mind transcends limitations, your consciousness expands in every direction, and you find yourself in a new, great, and wonderful world. Dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be.”         – Patanjali

———-

Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life/ She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.