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Archive: May, 2015

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Train, Plan, Sleep, Repeat!

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How does one train for a 24 day bike ride? It’s hard to say there is one correct way. Everybody has different challenges and needs. For me, it was endless hours dedicated to road rides and indoor bike training, and adjusting daily routines and diet.

 For the above average athlete this may not be so much to ask, but for someone with a history of knee pain and other discomfort, it has certainly become one of my largest obstacles. From day one of training, I have been easing my way in slowly to ensure my knee does not act up again. While I made adjustments to overcome my knee discomfort, I still faced a difficult learning curve for what to eat and what not to eat before, during, and after each ride. Thankfully I had Hartley on my side to guide me with his healthy habits!

There is no rhyme or remedy to gaining the type of endurance necessary to last 24 days other than sheer dedication and a healthy mental state. Warning: Beginning indoor training for the first time, especially during the winter is horrible. My first class in December was not the most positive memory. To summarize, I walked in and impressed everyone in the class by telling them I am training for a bike ride to Halifax. I then proceeded to embarrass myself 30 minutes into the lesson by jumping off the bike mid-interval gasping for air. In my defense, the class was called ‘Intensity Tuesdays’ and was filled with experienced riders. The good news is that the training became much easier after three weeks. One of my greatest achievements this year has been proving to people that once I set a goal, I can stick to it. I have had the same fundraising goal and biking distance goal since last summer and I am proud that I have not once thought about lowering these goals. Over the past year I have gained confidence in my biking for pacing to keep stamina. So far this year, I have biked close to 3000 km leading up to the ride. I have come to the realization that regardless of the training I have completed during the past year, I need to be motivated on a day to day basis during my journey to Halifax, or I will not be able to complete 100+ km per day. ‘Luckily’ I have a great deal of motivation going forwards in this journey, and I could not have persevered without the help of so many kind individuals who guided me along the way.

My greatest supporter has definitely been Hartley. Not only has he been my health and fitness advisor, but he has been a major factor in making this journey come together. It’s simple, without Hartley, this journey would not be happening. He has supported me through the year and has taken on the challenge of dealing with me for almost a full month. Hartley and I know we are going to have a lot of fun throughout our travels, but we still have a lot of work ahead of us. In addition to my 2,200 km of biking, Hartley has 2,200 km of driving each way plus 100 km of running.

Before creating the Journey for Janice, I had never met another biker with a similar experience. Fun enough, I happened to meet another cross-country biker a few weeks after starting this project! That same week I was introduced to another cross-country biker. The first biker, Amy Tunstall, biked across Canada last summer raising funds for the Niagara Suicide Coalition for suicide awareness and prevention. The second biker is one of Muscular Dystrophy Canada’s ambassadors, Keith Martin, who biked across Canada in 2008 with four others in support of the organization. These two individuals have inspired me to bring my fundraising efforts to new heights! This ride has already become something much greater than we ever imagined and we have already doubled our initial fundraising goal!

As the Journey for Janice quickly approaches, I look back on this year in awe. The support we have received in memory of my mom and in support of Muscular Dystrophy Canada has been amazing. I don’t think it has sunk in yet, but it is a great feeling to have already raised over $15,000 and an additional $5000 in sponsorship. We are incredibly excited for the journey that lies ahead!

Stay tuned for our blogs throughout our journey to Halifax!

_________________

To learn more about Journey for Janice or to donate, please click here.

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Overcoming nutritional challenges of neuromuscular disorders

nutrition

 

A balanced diet with the right amount of nutrition is an essential part of everyone’s quest for good health. Food provides the energy our body needs to stay strong and carry out daily activities.

But if you have a neuromuscular disorder, it can sometimes make proper nutrition a lot more challenging. Depending on your particular situation, you may experience anything from weight changes (losses or gains), to dehydration, and motility issues.

Weight Gain

Some people with neuromuscular conditions may have a tendency to put on too much weight. This can be due to reduced mobility (meaning less energy is burned off), or an increase in appetite (which may be a side effect of some medications, such as steroids). Too much weight can place an extra burden on already weakened muscles, as well as cause a strain on the respiratory system. In the case of weight gain, prevention is better (and easier) than getting excess weight to come off.

Keeping the weight stable can be done in two ways: eating a balanced diet by reducing intake in high-calorie foods, or by exercising wherever possible – although this can be difficult for individuals with limited mobility.

Weight Loss

Sometimes poor muscle tone in the stomach can cause its contents to “empty out” slowly, making you feel full quickly, or not feel very hungry in the first place. This may mean you are only able to eat and drink a small amount at a time. Reduced mobility may also make you progressively more tired during the course of a meal. As a result, mealtimes can last a long time, and you may not end up eating very much. And if you don’t ingest enough calories, your blood sugar levels may also drop. This can cause weakness, dizziness, mood swings, hot/cold flashes, and shakiness.

Adding high-calorie food supplements or snacks (such as meal-replacement drinks or pudding) between meals may help you to take in more energy and gain back some of the weight you have lost.

Chewing and Swallowing

People with neuromuscular disorders may also have difficulty chewing and swallowing their food. If the associated muscles are very weak, swallowing may be difficult either because of trouble moving food around the mouth with the tongue, tightness or weakness of jaw muscles, or difficulty protecting the airway.

These eating and drinking difficulties could cause you to accidentally “spill” food or drink into your airway, making aspiration and risk of infection a possibility.

Certain types of foods are more difficult to chew and swallow than others, especially when there is muscle weakness. If you experience this, try to avoid certain problem foods, such as tough pieces of meat or sticky foods like thick cheese spread or peanut butter. Sometimes thickened drinks, such as milkshakes, can be easier to swallow because they cause less risk of aspiration than thin liquids.

Muscle weakness can also lead to constipation and other gastrointestinal motility issues. And difficulty swallowing can not only lead to weight loss, but also dehydration if you are not drinking enough liquids as a result.

Though experiencing any of the above issues can be challenging, there are many things that can be done to help improve your situation and bring your nutrition back into balance – such as such as dietary changes, food texture modification, supplements, snacks between meals, or oral motor exercises.

Your healthcare team – which may include a dietician (to assist with food choices and meal planning), a speech therapist (to assess how muscles in the mouth and throat are working), and/or an occupational therapist (to make suggestions on seating, kitchen set up, or equipment) — can be instrumental in helping you make the right choices.

 

For more information, please see our section on nutrition at www.muscle.ca/eatbetter, our campaign for promoting nutrition with Safeway Canada, or check out these fact sheets available from Muscular Dystrophy UK:

Healthy Eating for Children

Nutrition and Feeding

Gastronomy

Dehydration

 

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Spreading Awareness Through Dialogue

CrystalCrystal Rondeau and her family are a cornerstone of the Muscular Dystrophy Canada community in Winnipeg, Manitoba. She is 25 years old, and is living with Spinal Muscular Atrophy Type 2.

Over the years, Crystal has not only lived with this severe muscle weakening and wasting condition, but has also fought cancer. She  began to use her story to help others understand disability, and disspell disability stereotypes.

Crystal’s presentations began when she was 16 years old, when a teacher asked her to make a slideshow about her life. At this point, Crystal had been in the hospital after undergoing a tracheotomy and described herself as going through depression and very suicidal. The slideshow provided an opportunity for distraction, so she got to work on her laptop and started typing.

‘I Have a Brain That Works… In a Body That Doesn’t.’

Now after almost 10 years of sharing her life and experiences with classmates, school groups, business and community groups, Crystal has it down to a science. She gives background information on what muscular dystrophy is, and the specifics of SMA and its varying types. Crystal paints a picture of what it is like to receive a diagnosis, prognosis, surgeries, and symptoms.

After discussing symptoms with the group, Crystal leads the group in a breathing exercise to simulate the difficulties those affected by muscular dystrophy have with breathing. Attendees breathe through a straw, and then evaluate how it felt. They then move on to breathing through the straw while doing jumping jacks, and re-evaluate. “The impact of the exercise is real. You can see it on their faces. It really shows them how it is for me to breathe,” she says. “The reality of the disorder hits them – that even breathing is such a struggle.”

Once the exercise is complete, Crystal turns to sharing personal stories about living with SMA, her cancer, and issues with being bullied.

“I do my best to explain exactly how SMA works; I explain the genetic in terms that are simple. I also tell them everything I need help with, right down to having someone help shave me. In regards to cancer, I do my best to show them how it changes your outlook on life. I witnessed so many children die and when they realize that it really happens, they take the time to think about it. As for bullying, I tell them exactly what has been said to me, and explain how it specifically  affected me. However, I also express that because of the bullying and challenges I’ve faced, I am a stronger person. “

She shows them photos, and tells attendees her dreams and goals – then it’s question period. Crystal does not shy away from anything asked. “Honestly, it’s my favourite part of the presentation. I find it very interesting to hear what they are thinking, and what they want to learn more about.”

“Doing the presentations is very fulfilling for me, it makes me happy. You can tell that they’re really impacted by my life and have enjoyed me being there,” says Crystal.

“I hope that people leave with a different view on life, and a different perspective on people who live with disabilities.”

If you would like to get in contact with Crystal, please contact our Winnipeg Community Office at 204-233-0022 ext. 2 or at averill.stephenson@muscle.ca

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What you need to know about muscle biopsies

doctor-659896_640You may be asked by your doctor to undergo a muscle biopsy. For many this sounds complicated, and perhaps a little unnerving. Here, we explain the basics of muscle biopsies so you don’t have to wonder any more!

Why would my doctor suggest a muscle biopsy?

The main reason you may be asked to undergo a muscle biopsy would be to determine what type of muscular dystrophy or neuromuscular disorder you have, some final diagnoses come from the result of the biopsy. Sometimes testing of your DNA may not provide enough or the proper information needed, and a muscle biopsy needs to be completed.  Moreover, you may be asked to undergo a muscle biopsy for research purposes. Muscle biopsy is a powerful tool to study muscle at a fundamental level. Some research questions can only be answered by analyzing muscle extract.

What does the procedure consist of?

Typical areas for the muscle to be taken from include the upper arm, shoulder, calf, and thigh – it is usually dependant on where you are experiencing weakness, and what type of MD or NMD your doctor suspects you are affected by.

The two types of biopsy techniques are needle and open:

Needle biopsies consist of a very small needle being inserted into the muscle, where it then extracts a small sample of muscle. The opening left by the needle is then closed and covered using surgical tape and a band-aid.

Open biopsies are used when a larger sample of muscle is needed.  An incision of one to two centimeters long is made, the sample is removed, and the incision is closed with a few stitches.  For this type of biopsy, the amount of muscle removed is usually about the size of the tip of your pinky finger.

Is there any recovery time?

Muscle biopsies are considered outpatient procedures, so there would be no disruption to school, work or other activities. The procedure is done under local anaesthetic.. To learn more on surgery and anaesthetics click here.

What is learned from a muscle biopsy?

A muscle biopsy is used for microscopic and/or biochemical analysis. Microscopic analysis can give information about muscle structure and components. Biochemical analyses allow cellular and molecular analysis. Muscle abnormalities can be identified following these analyses, combined or not.  These can determine your MD or NMD and what the sub-type is.

For more information see:

Muscular Dystrophy Campaign

Muscular Dystrophy Association

MDA’s Quest

You can also contact your doctor or your regional services person.

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How I See It: Ivana Explores the World of Technology Part II

Business on a laptopThis post is a continuation of the last How I See It installment which can be found here

Over the course of the next few years, living with a disease such as MD will be easier thanks to technology. More assistance will mean it will be possible to complete daily activities and some aspects of life may not become so challenging.  Here are some examples of technology that is currently in the works, or already available.

Skulpt
The company created a sensor designed to measure the ratio of fat and muscle fiber in a user’s muscles. The Aim can measure 12 different muscle groups and estimate total body fat percentage from these readings. It can store the profiles of up to six different people and sync with iOS and Android devices using Bluetooth. Co-founder Seward Rutkove is a Harvard educated neurologist and provides medical devices used by research teams investing muscle-wasting diseases such as ALS, Muscular Dystrophy, and Spinal Muscular Atrophy. Currently, Skulpt is focused on fitness rather than the injury prevention market; however, future versions of its device could be used to detect even the slightest damage.

Monitoring Muscles

A new handheld device could give doctors more precise date about muscle health – painlessly. Currently, the best way to diagnose and evaluate muscle degeneration involves an uncomfortable needle test. A new device could provide a painless, noninvasive, and quantitative alternative. The prototype handheld probe, similar to an ultrasound probe, measures electrical impedance in the muscle, which changes depending on the health of the tissue. This useful research tool can help doctors understand in more detail how EIM readings relate to the underlying tissue changes with disease.

Controlling a Computer with Your Eyes

            Researchers at Imperial College London have developed an affordable technology that could allow millions of people suffering from ailments like Parkinson’s, Muscular Dystrophy, or spinal cord injury to interact with computers – using just their eyes. They have built a 3D eye tracking system that allows patients to interact more smoothly and more quickly than existing invasive technologies.

The Sesame Smartphone

The Sesame Smartphone is an Android device, which is designed specifically for people with mobility impairments. The smartphone is activated through a clever voice command – “Open Sesame” – and is operated entirely through head movements and voice control. The smartphone has a front facing camera that searches for your face in the frame. Once the system finds your face, you can control a cursor by moving your head up, down or sideways. When you rest in one position for a few seconds the navigation icon will appear and ask you if you want to click, swipe, or see more options.

Sesame was developed by Oded Ben Dov, an Israeli entrepreneur, app developer and computer expert Giora Livne who served as a naval commander in the Israeli Defense Forces.

Permobil

            Per Uddén is a remarkable individual who has a talent for seeing new possibilities where others see none. He is a doctor, entrepreneur, inventor, and father. Being the founder of the Permobil company, he has never been afraid to fight for his vision.

Twenty years ago I was still a kid, unaware of anything except the latest Barbie and sneaking candy in my mom’s grocery cart. I had no idea about limitations; about the daily struggles of individuals in minorities. Upon research, about twenty years ago wheelchairs were not able to drive both outdoors and inside the home. Electric vehicles were very limited and very expensive. Which is why Per created the first chapter of Permobil. He has never given up his mission in which every disabled person has the right to have his or her handicap compensated. He has since passed away but his mission remains alive – now and always.

If you visit the website you will find so much information and resources in finding the perfect rehabilitation solutions. The products are always improving and customer satisfaction is very important to the company. They believe their products must always comply with or exceed approved specifications.

Promising Treatment

A drug called antisense oligonucleotide is made up of a short strand of nucleic acids, the building blocks of RNA and DNA. The molecule is designed to eliminate the abnormal part of the protein in a subset of children with a specific mutation in the gene for dystrophin. It is being developed by Prosensa, a Dutch biopharmaceutical company and pharmaceutical giant GlaxoSmithKline.

Two new classes of experimental drugs shown to have powerful muscle building capabilities are “Selective Androgen Receptor Modulators (SARMs)” and “Myostatin Inhibitors”. Scientists have developed antibodies to Myostatin and other molecules that can boost lean muscle mass in animals by as much as 60 percent. It’s not yet clear how well Myostatin inhibitors will work in humans. Clinical studies of two Myostatin inhibitors are now under way for muscular dystrophy and other muscle-wasting diseases.

___________________

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. Read Ivana’s personal blog at: https://milarosa6.wordpress.com/ 

 

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