Archive: June, 2015


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Are you getting proper sleep?

Page 29_Resmed Swift LT Nasal Pillows2Many people living with neuromuscular disorders find that their sleep is impacted by complications resulting from weakened muscles.

An article published by the Muscular Dystrophy Association in Quest notes that some of the common ‘sleep disturbances’ include:

  • Snoring
  • Choking or gasping
  • Restless tossing and turning
  • Sweat
  • Waking up with
    • Fatigue
    • Headaches
    • Sore throat
    • Dry mouth
    • Memory or concentration problems
    • Excessive sleepiness during the day
    • Falling asleep at inappropriate times (eating, talking, driving)

All of these symptoms could possibly mean that you are experiencing respiratory issues during the night, and these should be brought to your doctor immediately:

For those with neuromuscular diseases, breathing problems during sleep may be caused or complicated by the fact that the muscles that aid respiration — the diaphragm and intercostals (between the ribs) — have been weakened by muscle disease.

Weak respiratory muscles can lead to nocturnal hypoventilation (ineffective breathing during sleep) or nocturnal apnea (periodic cessation of breathing during sleep), when gravity, body position and neurological factors naturally make breathing efforts less effective.

Your doctor may suggest one of the following:

A simple method used to assess nighttime breathing difficulties is to measure exhaled carbon dioxide in combination with pulse oximetry, which painlessly measures blood oxygen levels through the placement of a small clip on a finger or toe. Typically these tests may be done at home, overnight while the patient sleeps.

A more sophisticated assessment tool is a sleep study or polysomnogram (PSG), which pinpoints the causes of fragmented or disrupted sleep through a combination of measurements, including: encephalographic (brain) activity, eye movement, muscle activity, heart rhythm, respiratory effort, nasal and oral airflow, oxygen saturation, carbon dioxide levels, limb movements and snoring. Polysomnograms are performed in a specialized sleep laboratory or sleep center, and last from seven to 12 hours.

These are only a few methods. For the full article, click here courtesy the Muscular Dystrophy Association. Contact your health care professional for individual assessment.

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10 Easy Nutrition Tips

peppers-445274_640We all know that nutrition and hydration are at the core of keeping our bodies healthy and strong. We’d like to share 10 tips from Kim Leacy, a Public Health Dietitian,  to ensure you fuel yourself to be successful in your day, and prevent unhealthy habits.

#1 Eat breakfast everyday! Smoothies are a great way to introduce a meal in the morning. Breakfast helps with your memory, concentration and attention, jump starts your metabolism, and those who eat breakfast every day tend to be healthier overall than those who do not.

#2 Use the plate method! Fill half your plate with veggies, a quarter with grains or starch, a quarter with protein, 1 fruit on the side and a glass of milk.

#3 Re-think your drink! Did you know sugar sweetened drinks increase your risk of cavities, weight gain, diabetes, high blood pressure and heart disease?

#4 Drink 2 glasses of milk a day! Milk isn’t just for kids.

#5 Have vegetarian meals and meals with fish often! Fish twice a week is the best way to get omega 3 and using beans as a meat substitute brings high fibre, iron and protein.

#6 Read food labels! Kim gives great information at around 24:30 in the video (see below).

#7 Eat a variety of food! Have a rainbow of colours, textures and flavours!

#8 Shop the outside! At the grocery store, stick to the perimeter – this is where the fresher food comes from. The inner aisles tend to be more processed.

#9 Beware of mindless eating! Steer clear of the bread basket at restaurants, the candy bowl at reception, or a co-worker’s cookies in the lunch room – these seemingly small things can lead to over eating and bad nutritional choices.

#10 Make smart goals! Create goals for yourself that are simple, measurable, attainable and timely.

To watch Kim’s full presentation, click here.


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What you need to know about pressure sores

From MDA Quest

From MDA Quest

What are pressure sores?

Pressure sores (also known as bed sores or pressure ulcers) are areas of damaged skin caused by staying in one position for too long. This reduces blood flow to the area. Without enough blood, the skin can die and a sore may form. They commonly form where your bones are close to your skin, such as tailbone, ankles, back, elbows, heels and hips. They develop quickly and can be difficult to treat when paired with limited mobility.

Who is at risk?

People who are bedridden, use a wheelchair, or have limited mobility are considered high risk for developing pressure sores. The Mayo Clinic provides a list of the symptoms of the different stages of pressure sores.

What should I do if I have a pressure sore?

If you notice the beginning of a sore, change position to relieve the pressure. If there is no improvement over the 24-48 hours, seek advice from your doctor. These sores may lead to serious infections, so it is important to be aware of the symptoms and to seek immediate medical care if you show signs of infection, such as fever, drainage or a foul odor from a sore, or increased heat and redness in the surrounding skin.

What can I do to prevent pressure sores?

The best prevention is to make sure there are no major pressure points and that you shift position regularly.

In addition, good nutrition and hydration helps to keep your skin healthy. You also want to make sure that your skin is properly moisturized, but not too dry or wet.

For those with limited mobility, it is a good idea to have a caregiver check for any skin discolouration or irritation on a regular basis.

Watch online videos about this topic

Resources & more information:

The Mayo Clinic

MDA Quest

US National Library of Medicine: Medline

Facing Disability

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So you want to volunteer at the #Walk4MD?

GREAT! As you may know, Muscular Dystrophy Canada is a volunteer driven organization and we are always looking for wonderful people to lend their time to help make the Walk for Muscular Dystrophy the best it can be! Here we list 10 great ways you can volunteer at your local Walk:

  1. Set up tents, tables… everything needed to keep the day running smoothly
  2. Sit at the Welcome Desk with a warm smile
  3. The Registration Table is where all the action goes down! Check people in, get others registered, collect cash donations, and give out raffle tickets
  4. Hand out the incentive prizes (t-shirts and USB charger), and run the raffle at the Prize Desk

    Volunteers at the Victoria Walk 2015

    Volunteers at the Victoria Walk 2015

  5. Many Walk events have a Water Station along the route to make sure anyone who needs a bottle stays hydrated
  6. Have some skill with the camera? Photographers are always welcomed volunteers
  7. Help serve lunch
  8. Face painters bring joy to all the kids – and the kids at heart
  9. Wrap up a great day by helping pack everything up
  10. Be a member of the Planning Committee for next year!

To volunteer at your walk, go to and select your location. On that Walk’s page, click the ‘Volunteer’ tab located under the location and date! Thank you to all our volunteers!

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