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!”

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Living with a tracheostomy: Scott Parlee

Scott_ParleeLiving with a tracheostomy: Scott Parlee is 42 years old and lives in Fredericton, New Brunswick, with his mother and father. Scott, who has Duchenne muscular dystrophy, has had a tracheostomy and been using a ventilator for seven years. He has relied on mechanical ventilation ever since a severe respiratory infection landed him in the ICU for two months. Luckily, his family has been a strong advocate for Scott and his care. When there were questions about whether or not Scott would be able to move out of the ICU and live at home, Scott’s father, Allen, made a strong case that the costs of home ventilation should be covered by the provincial government. Not only would home be a happier environment for Scott, but it would actually cost the health-care system less than if Scott had to remain in the hospital.

In addition to the ventilator, Scott now uses a CoughAssist™ mechanical insufflator-exsufflator to help with his breathing and secretion release. His parents have noticed a tremendous difference in Scott’s respiratory health since he began this therapy, and they encourage others with respiratory muscle weakness to learn more about it. They believe that there is not enough awareness about the benefits of the CoughAssist™ device. In fact, Scott and his family have encountered many situations where health-care professionals did not know how to use the CoughAssist™ machine and had to be taught by Scott’s father. Scott and his parents advise others not to be fearful of getting a tracheostomy. They acknowledge that it has taken getting used to and that there is an adjustment period following the surgery and initiation of invasive ventilation.

For Scott, however, getting a tracheostomy was life saving, and it has not prevented him from leading a fulfilling and productive life. He travels extensively, and over the past few years, he has attended AC/DC, U2 and KISS concerts.

Read more in the Guide to Respiratory Care for Neuromuscular Disorders.

Becker Muscular Dystrophy: Through the Eyes of Nancy Jackson

NancyJackson-blogI was born November 13th, 1961 in Smith Falls, Ontario. For the first seven years of my life, I was a healthy little girl who enjoyed playing and could not wait to attend school. Then, at age seven, I was diagnosed with Becker muscular dystrophy –  a progressive, muscle wasting condition. Here is my story.

                My grade one teacher, who had a daughter born with muscular dystrophy, saw the signs. In many ways I was like every other kid my age, but I was slow in sports, I would frequently trip and fall, and I had trouble getting up from a seated position.  I was sent to see a specialist at the Ottawa Civic Hospital, who did a muscle biopsy on my right leg and determined that I have Becker muscular dystrophy.

By the time I entered high school, walking was increasingly difficult, but I was determined to keep going without a wheelchair. I would leave each class five minutes early, so I could beat the crowds in the hall to avoid getting bumped into and falling over. Believe me, some days those school halls seemed a mile long. Stairs were becoming a struggle, so the school arranged for my classes to be on the main floor in the morning and on the second floor in the afternoon.  After I graduated from high school, I went on to study computers at Smith Falls Alternative School.

Over the years, as my condition progressed, my family has had to made adjustments to our home. For example, when I was unable to climb stairs, a stair lift was installed so that I could reach the second floor. It was only a few months later that I would lose my ability to walk, and began using a manual wheelchair. When I no longer had the strength in my arms to move the manual wheelchair on my own, I transitioned into a powered tilt chair. I was surprised and delighted by the sense of freedom and independence that came with using the power chair!

As my muscles continued to weaken, it became increasingly difficult for me to get into and out of my wheelchair. My occupational therapist recommended some further home modifications – a ceiling track lift to help with transfers, as well as changing the stair glide to a platform lift to allow me to reach the second floor while remaining in my wheelchair.

Becker muscular dystrophy causes muscle weakness throughout my body: not only are my legs and arms affected, but also my breathing muscles. I no longer have the strength to breathe or cough on my own.  I rely on a ventilator, which is mounted on the back of my wheelchair during the day so I can get around.  I was prescribed a CoughAssist to help me clear mucus and prevent respiratory infection. Thankfully, Muscular Dystrophy Canada was able to help me obtain the CoughAssist (which is not covered by my provincial health care program).

I feel very fortunate that I am still able to live at home with my mom. My siblings live nearby, and my nieces and nephews are my strength each day. I have the most amazing home-support workers, provided through Ontario March of Dimes. I am so grateful for the care and support I receive…by my true circle of friends.

Sadly, Nancy Jackson passed away September 13, 2013.  Her obituary can be found online.

Take a deep breath, but don’t take it for granted: Breathing and Duchenne Muscular Dystrophy

The following article appeared in the Ontario Physiotherapy Association’s newsletter.

There is a growing body of evidence that proper respiratory therapies and supports will improve life expectancy and quality of life for people with Duchenne Muscular Dystrophy (DMD).

  • In a study of 157 people with Duchenne muscular dystrophy, patients who were not ventilated lived an average of 20.4 years, and patients who were ventilated lived an average of 31.0 years. (Konagaya et al, 2005)
  • Respiratory failure in DMD often occurs as a result of the inability to cough during otherwise benign upper respiratory tract infections. The earlier that airway clearance is taught and practised, the less likely is early respiratory failure, pneumonia and death. (Finsterer, J., 2006; Bach,J., et al, 1997)
  • Ventilatory support results in improved sleep, improved well-being and a slower rate of decline of pulmonary function (American Thoracic Society- Consensus Statement, 2004, 2009).

Given this evidence, we can understand the importance of focusing on respiratory care. Typically, when we first meet a boy with DMD, he is still mobile and his lungs are getting a healthy workout on a regular basis. As muscle weakness increases and he becomes less active, his vital capacity will become reduced.

Even at early stages of disease progression, it is important to facilitate maintenance of a strong cough. Blowing up a balloon is an effective way to practise and strengthen closure of the airway by the epiglottis. Blowing out candles reinforces the short, sharp blowing required for an effective cough. As the condition progress, therapeutic exercises may include blowing through a straw to move a cotton-ball around a table. (To make this exercise more fun, he can pretend to be playing a game of mini-soccer). Anything that demands a powerful burst from him will reinforce coughing strength.

 

Following the transition to using a wheelchair for mobility, it becomes very important to maintain an effective cough and range of movement in the chest wall and lungs. Teach parents how to reinforce the cough by using manual or mechanically-assisted cough techniques. Daily breath-stacking therapy has helped boys with DMD to maintain and, sometimes regain, their vital capacity. Breath-stacking – also known as “lung volume recruitment” – can be performed by taking a series of inhalations before exhaling or by using a modified resuscitation bag.

The physiotherapist should take an active, supportive role in the monitoring of respiratory function. The first signs and symptoms of hypoventilation are usually sleep-related:  restless sleep, frequent turning, nightmares or waking in panic, morning headaches, nocturnal sweating. These signs and symptoms should be shared with the respirologist. If the nocturnal O2 saturations are below 90%, it is time to consider night-time ventilation to stabilize his respiratory status. Breath-stacking and assisted coughing therapies should be continued.

As the condition progresses, daytime oxygen saturation levels – which are typically higher than during the night – may fall below 90%. Oxygen de-saturation indicates the need for daytime or 24 hour ventilator support. Signs and symptoms include: lack of interest in breakfast, daytime sleepiness and fatigue, poor concentration, irritability (especially in the morning), and breathlessness, often on transfers or when eating. Other signs of hypoventilation are failure to thrive, frequent chest infections and even delayed puberty.

In the middle of all of these gradual respiratory changes, there is young man who remains the same social being, with the same interests, desires, and needs as his peers. A 2005 study reported that general and mental health, emotions, social functioning and pain in young men with DMD, who were ventilated, were similar to the population without a chronic illness. They also reported involvement in activities such as wheelchair hockey, attending camps and going on excursions. For them, life had meaning and value.

It is important remember this and to support the social participation of boys with DMD. Laughter is great for their mental and physical health, as the act of laughing requires a burst of effort from their body.

Take a deep breath. Laugh. It’s good for you.

Eric Ferguson is a Physiotherapist at Children’s Developmental Rehabilitation Programme.

References:

Konagaya, M. et al (2005) Effect of positive pressure ventilation on life-span and causes of death in Duchenne Muscular Dystrophy. Poster presentation.

Finsterer, J. Cardiopulmonary support in Duchenne Muscular Dystrophy. Lung (2006) 184: 205-215.

Bach, J. R., Ishakawa, Y., Kim, H. (1997) Prevention of pulmonary morbidity for patients with Duchenne Muscular Dystrophy. Chest 1997; 112:1024-1028.

Ramelli, G.P., Hammer, J. (2005) Swiss physicians’ practices of long-term mechanical ventilatory support of patients with Duchenne Muscular Dystrophy. SWISS MED WKLY; 135: 599-604.

Never Lose Hope

Ivana-blog AugustThere are no guarantees or promises in life. We never know what is next; it is all a guessing game. One minute you are on top of the world, rising above all else. The next, you are at the bottom, struggling to pick yourself up. Life is tough. It is no secret that you will stumble and fall down. Everything changes. Life is full of change and to exist, it is inevitable. If there is one thing I want you to remember it is this: Never lose hope. Life is going to try and push you into many directions and it is normal to want to go down in the hole if you feel defeated. But your strength is not going to be measured by the impact of all your hardships in life, but the refusal to allow these hardships to dictate who you become. You and you alone are responsible for your own life; nothing else is or ever can be.

In the dictionary, hope is defined as, “the feeling that what is wanted can be had or that events will turn out for the best.” If you want something in your life, I think you have to believe in yourself, even when nobody else does. What I have learned through business school and in life, is that sometimes it is failure that will push you harder and farther than success ever can. Sometimes, it is not the happy moments and accomplishments that explain how a person got to be where and who they are. Sometimes, I think it’s the things they tried to do and couldn’t do. The things they’re still struggling to do. If you read biographies of some of the most accomplished individuals, you will find that they had a desire for change, for something to happen. They faced obstacles and challenges and instead of staying where they were and being frustrated with the circumstances, they took a risk and believed in themselves. These are the ones that have known defeat, known struggle, known loss, but somehow found their way. This does not just happen. You have to be willing to fight against the odds and not be shackled by fear or insecurity or doubt.

Never losing hope can be applied to almost any aspect of your life. Whether it’s getting accepted into University, finding a job, finding yourself, or waiting for a better day to come. This is when you find out exactly what you are made of, what you’re capable of. If life did not test us, how would we ever be able to define our character? You may fail more often than you win and it’s up to you to overcome the difficult, the mean, the unfair. Do not let difficulties cripple your life. Whatever you want to accomplish, no matter how many doubts you hear, do it. A diagnosis cannot stop you. It may slow you down, but you can do this, do it for yourself. Prove it to yourself. See where it takes you. What’s inside of you cannot be stopped. Don’t lose hope in yourself.

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. 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.

Learning Indirectly

tumblr_loytmwLVsY1qm37rzo1_500There are always ways you learn things; it can be through a book, a teacher, by following the steps of a role model, or by making a mistake. The list is endless. What I never thought is how learning indirectly taught me more than I ever thought possible. Learning indirectly simply means learning when failure happens or when things don’t work out the way you wanted them to. The fact of life is most of what you are going to learn will be indirectly. After being diagnosed, you may also go through vulnerability as you try and understand this new information and create a new identity for yourself. You need to confront this new reality and there is no book, no guidelines to show you how to go on.

It is completely wrong to think that after a diagnosis your life will not change and it shouldn’t be difficult to adapt to. That knowledge isn’t even easy to accept. The recognition of that reality itself is hard. There is uncertainty in all of life. Events occur and we have no control and no warning. The uncertainly of the future has me asking questions like- what will happen to me? Will I be able to walk in five years? Ten years? Uncertainty about the future will not go away but over time, you learn to come to terms with it.

It’s not all a sad story though, and really I am not sure it ever really was. My diagnosis has forced me to look at the fragility of life and pay attention to things in life I never noticed before. I also learned not to waste my energy on things that don’t really matter. So all in all, I am not the way I once had been. But that’s okay, because learning indirectly made me realize how powerful I am.

Meet the “Let’s Make Muscles Move” blog’s new contributor:

I volunteer!My name is Ivana and I was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. I was diagnosed with LGMD a few years ago and it has forever changed my life.

I know that after being diagnosed my family were probably thinking that this disease would slow me down and I had doubts that it might as well. But if your strong, you can push even harder than you did before. So I made the choice to keep fighting and I took the hardest road in hopes it would guild me to something I never thought possible. So instead of asking why I was given this life, I understand that ordinary wasn’t good enough for me. In my heart, I know that I was meant for something greater.

        After graduating high school I went to post-secondary and got a degree in Finance and General Business. I chose to do Commerce as opposed to a Arts (despite my love for writing) because I knew it would be the most challenging bust most rewarding degree. I came to realize early on that business has this amazing power to transform society and create prosperity in a number of ways. It was the hardest and best decision I have made to date.

        My blogs will be everything I have learned along the way and what I continue to learn today. It will teach you my biggest lessons, what inspired me, and some mistakes. I hope you enjoy reading them as much as I enjoy writing them.