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.

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Spotlight on Respiratory Care: Nicolas Reny

Nicolas Reny with tracheotomyIn April 2013, Nicolas Reny—a young man with Duchenne muscular dystrophy—caught a simple cold that became worse. While a respirologist prescribed some medication for the cold, he also recommended Nicolas startlung volume recruitment exercises. A respiratory therapist came to Nicolas’ house to train him in these respiratory exercises and to conduct a few tests. The therapist noticed that Nicolas’ blood oxygen levels were very low,that he was coughing a lot and that the medication hadn’t decreased his lung secretions.

On April 12, Nicolas was admitted to Cité de la Santé in Laval. After attempts were made to reduce his cough and lung secretions with intravenous antibiotics and bronchoscopies, Nicolas was transferred to the intensive care unit (ICU). In the ICU, Nicolas was intubated—a flexible plastic tube was passed through his mouth into his trachea in order to maintain an open airway and facilitate ventilation of the lungs using mechanical ventilation. He remained intubated for 12 days. His lung secretions were so abundant that the staff recommended that he undergo a tracheotomy, a surgical procedure that creates an opening for an artificial airway. Nicolas and his whole family were surprised that the situation had become so serious so quickly.

The operation took place at the end of April. At the beginning of May, Nicolas was transferred to the Montreal Chest Institute and enrolled in their ventilator assistance program. The Institute’s staff monitored his recovery, prescribing both lung volume recruitment exercises four times a day and nightly use of a bi-level positive airway pressure ventilator. At the end of May, Nicolas’ tracheostomy tube was removed; he was back home by the beginning of June to the great delight of his entire family. The Institute has continued to support the family by providing them with equipment, training, at-home care from a respiratory therapist and a 24-hr helpline. Nicolas—who has continued his lung exercises and the use of his bi-level device at night—is enjoying life!!!

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

BOO! Get ready for Halloween with these great wheelchair-friendly costumes

Halloween is the holiday where you can dress up, and change who you are for a day. Sometimes though, finding a costume that works for you can be difficult – especially when you need a device to get around. It may appear to be a challenge, but in reality it just takes a bit more creativity, and results in some really unique and amazing costumes!

Check out these awesome costumes! Click on the photo for more information.

Add some extra magic:

Magician's bunny

Show support for MDC’s biggest supporters:

Fire Fighter

For the daredevil:

Deep Sea Diver

Cinderella:

Cinderella

Hippie:

Hippie

Cleopatra:

Cleopatra

D.J.:

Disk Jockey

Construction Worker:

Construction Worker

For the prankster:

Out House

Classic Cowboy:

Cowboy

Ghost with a twist:

Ghost

Bumblebee:

Bumblebee

For the hockey fan:

Hockey Player

Classic Devil:

Devil

For more amazing costume photos check out Pinterest

Still looking for more ideas? This is a great one stop idea bank with ideas organized by theme.

Look for step-by-step instructions? Some great children’s costumes, complete with materials list and instructions, are at your fingertips.

Need some more tips with transforming a wheelchair or other mobility device into a great costume? Today’s Parent has some great tips to get those creative juices flowing!

Whatever you decide to be this Halloween, be safe and enjoy!

Happy Halloween!

Phoenix: Winnipeg Walk for Muscular Dystrophy Ambassador

Phoenix-WinnipegHello! Bonjour! My name is Phoenix. I am seven years old, and am in grade two in French Immersion.  I love to read, ride my bike, dance, sing, play dress up, and do arts and crafts. Oh – and I have a rare form of muscular dystrophy called Nemaline Rod Myopathy. Surprised?

When I was born I almost died. I couldn’t breathe properly, eat, or even cry. I couldn’t turn my head as it was very heavy, so mommy did that for me.  I had some surgeries and was on a ventilator. Doctors told mommy that my chances of survival were very slim, and not to expect me to make it to my first birthday. If I beat the odds and survived, I would never be able to eat, walk, or talk, and most likely would have some sort of brain trauma due to oxygen issues.

I sure surprised them! I am walking, talking, swimming, and can even run a little bit now! I use a wheelchair for longer distances as I can get very tired, but don’t need it for shorter walks. I am also very smart! I read better than my big kid buddy who comes to my classroom to read to me! I also sing in choir and love it! Even better, I have been able to give back my ventilator, and just got my G-tube taken out – mommy cried because she was so proud of me. Mommy says I can do anything!

I asked mommy once why God gave me muscular dystrophy. Mommy said that only the strongest kids can be born differently-abled, because we are the ones who inspire the world. I thought that was funny because I have weak muscles, not strong ones! Now I understand that she meant strong in the heart, not the muscles. Sometimes it still makes me sad when I can’t keep up with my friends, but mommy says we are all born with different strengths, and different weaknesses. I am great at languages and reading instead, and wouldn’t the world be a boring place if we were all exactly the same? I think it would be.

I am proud of myself too! Mommy says that I am changing the way the world looks at kids with muscular dystrophy. I was once considered severely affected, and not likely to live. Now I am considered mildly to moderately affected, and am going forward full tilt! I just want people to know that just because my muscles aren’t built the way most people’s are, it doesn’t mean that I can’t do things that they can. I may just have to find a different way to do it. If mommy had given up on me walking I wouldn’t be able to walk today, so I have learned to never give up! One day I will be a dress designer, or a doctor, or maybe a ballerina. I think my most important job though will be to teach people about muscular dystrophy. I have already begun teaching the kids at my school, and have even taught some doctors about my Nemaline Rod Myopathy. How many seven  year olds can say they teach doctors?!

Phoenix is the 2013 Winnipeg Walk for Muscular Dystrophy Ambassador.  

Make it happen

Ivana October blogExercising and eating healthy is easier said than done, especially after a long day at work/school or when a few too many macaroons are calling your name. I never had the desire to go to the gym or worry about what I was eating until after I was diagnosed.

Even before my diagnosis was confirmed, my doctor gave me a Pilates DVD and told me to exercise every day for three months and come back to him with how I was doing. I found that some of the exercises I could not do well even after three months, and some I had improved on in the time period. This is when it all began. When my diagnosis was confirmed, I had become so much more grateful for all that I had. I had one chance to live the best and most fulfilling life I could despite the curve balls thrown at me.

When you run into an obstacle you have to overcome it as best as you can. Do not let it destroy you. Sometimes you will work really hard and somehow still fail. This is life. But your character, as I mentioned before, is defined by how you stand in the midst of defeat than in victory. Know when this moment comes, that you should never give up. Bernard Baruch could not have said it better, “the art of living lies less in eliminating our troubles than in growing with them.”

To stay healthy I do a mixture of both eating healthy and exercising. I have a few apps and DVDs that I use when I exercise at home. Walking is also a great way to maintain your muscles for as long as you can. Anytime I can take a few extra steps, I will. Parking a few stalls down or taking the long way will add up. I recently tried out a step counter which also encourages me to take more steps. What I try and do every day is a mixture of Pilates and Yoga. There are so many different exercises you can find and I know there are plenty that are not high endurance but still have a high impact on your body. So try it out! If you’re unsure about what exercises to do or what areas to work on, physiotherapy is also great!

In time, your body will change as everyone’s does. But I can guarantee you that doing something is a much bigger change. Do not wait for time to change everything. Yes, after a diagnosis I was thinking more along the lines of, “I only live once, I have this one life and I have to make the most of it.” But in reality, that is not entirely true. This one life is not all you have, in truth, you don’t only live once, you live every day. So decide that you have the power to not only make the best of the situation, but actually make a better life for yourself because of it. I know everyone’s body is different, so it’s up to you to find your balance and what works best for you. If you have any tips to add to mine, leave a comment! I’d love to see how you are maintaining your health after a diagnosis.