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Archive: January, 2015

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Lasting love and disability – a Valentine story

Francine-et-JeanFrancine Desrosiers and Jean Emond have been together for nearly 30 years. But Francine almost decided not to go out with Jean, because she was afraid to tell him she had facioscapulohumeral dystrophy. Her condition wasn’t apparent and she feared he wouldn’t want to pursue the relationship if he knew her secret.

But one day, while they were out at La Ronde amusement park, Francine stumbled and fell flat on her face. When that happened, she finally mustered up the courage to tell Jean about her condition over the phone. Jean was surprised, but never once thought of backing out of the relationship. A few hours later, he showed up at Francine’s door with a bouquet of flowers.

Since then, and despite the progression of Francine’s illness, they have supported each other and built a good life together. When the question of whether or not to have children came up, they both thought about it long and hard. They both loved children, but the fear of passing on the disease made them decide not to have any. Jean says he has no regrets; he has bonded with his nieces and nephews and feels completely fulfilled. It’s a little different for Francine. She does have some regrets, especially when she sees children… but it’s all a matter of acceptance.

Jean says he loves Francine deeply. He appreciates her patience, her kindness, her sense of humour and her understanding. He likes spending time with her and talking with her. He accepts her as she is. Francine also professes her deep love for Jean. She’s comfortable with him; he’s attentive, funny and patient, especially with an illness that keeps progressing and that brings a lot of changes in their lives.

The dystrophy can sometimes make their lives difficult. For several years now, Jean has observed the changes in Francine – the loss of certain functions. For example, a few years ago she could walk but now must use an electric wheelchair. Several adaptive devices are now also part of their daily life. Jean says they find a way to cope…that’s life. They’d like to travel and go to the restaurant more often, and be involved in more social activities, but fully accessible restaurants or museums aren’t that easy to find.

How have they managed to stay together all these years? Communication, openness, listening, love. Respect for one another and for each other’s differences. Being able to make compromises and accept the good…as well as the bad.

 

The “S” word

Have you ever seen a couple where one or both parties were disabled, and wondered about their relationship, and about their sex lives? Do you have a neuromuscular disorder and wonder how it will affect your sexuality and future prospects of love and relationships?

It’s normal to have these questions, says Kate McBride, RN, Coordinator of the Sexual Health Rehab Service at GF Strong Rehab Centre in Vancouver, who was one of the keynote speakers at our Empowerment and Action conference.

McBride shared some common myths people have about disability and sexuality:

  • people with disabilities are not interested in sex
  • sex means intercourse
  • sex is always spontaneous, with no planning
  • people with disabilities are not desirable
  • good sex requires orgasm
  • people with chronic illness should not become parents

The fact is that sexual health is a major aspect of wellbeing that affects people of all ages and stages of their lives. There is no right or wrong way to experience sex, as long as it’s safe and consensual. You define your own sexuality.

Resources:

Love and Sex

pleasureABLE: A sexual device manual for persons with disabilities (link to open in new window)

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How I See It: Introducing Ivana

Ivana

Hello! I’m Ivana,

If you have read any of my blogs on Muscular Dystrophy Canada or through my website Mila Rosa, you would know that all I ever want is to have a positive impact. I love being creative and learning new ways to brighten up my life. Along the way, I hope to inspire you to do the same too.

I try and stay positive and sometimes am annoyingly optimistic. But I believe in the good. I believe in being kinder. Every day I try and become a better person than I was yesterday.

When I was first diagnosed, hearing the words – there was an immediate darkness. Everything changed in that moment. I was diagnosed with LGMD2A in my very early 20s, while attending post secondary school. It has changed a lot for me – the way I think, the way I plan, etc. But one thing this disease will never take away from me are my words.

This disease has taught me a lot about myself. I have learned that it’s okay to break down and go through all the emotions that come after a diagnosis. I have also learned how truly powerful a positive attitude can be. I have taken those emotions and turned them into something that I hope will make a difference. So when you ask me what I want to accomplish through this feature, it’s very simple. I want to get back up and fight this disease – and take you along with me.

My goal is not to just survive this disease; I want to thrive beyond it. Everything I write I hope you feel the passion, the humor, and emotion. If I can bring a smile to one person’s face or give hope to someone that needs it during their hardest moments – that is what I want most. I want you to learn something new, to keep your dreams alive, to be motivated, and to believe.

So with each article I hope to accomplish one thing off my list and I hope yours as well.

I am very excited to start this new feature in moveit!  I will be writing about what I seek answers to the most, what’s innovative, new discoveries, etc.  Every couple of months I hope to bring you a fresh perceptive from “The View from Here”.  I will be writing about what I seek answers to -  genetics, travel tips and the most accessible places to travel, best types of therapy, vitamin research, stem cell research, technology benefits, and I hope to be learning about your stories too.

I hope my words encourage you to stay strong, to keep pushing yourself past all rational limits and to never let yourself give up. Even when you’re out numbered – fight.

___________________________________

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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50 Years of Commitment

Alan

For the last half century, Alan Bartley has been working tirelessly to fight muscular dystrophy.  When he first joined the Winnipeg Fire Department, he was introduced to some individuals affected by neuromuscular disorders – as Fire Fighters are the largest supporters of Muscular Dystrophy Canada – and he hasn’t wavered in his commitment to find a cure since.

Over the years, he has advocated and rallied behind hundreds of families. From legislative protests, to getting a group of Fire Fighters together to build a ramp at an individual’s home.  Alan is a face of Muscular Dystrophy Canada, along with families, staff, and Fire Fighters across Canada – not just in Manitoba.

Alan treats the fight against muscular dystrophy in much the same way he fought fires when he was on the job.  No one left behind.  We stay until the fire is out – or in this case, until a cure is found.  And his fire is definitely not out, yet!

For over a decade, Alan has co-chaired the Manitoba Chapter.  His many activities with the Chapter include donning the big red suit at their annual Christmas Party, advocating for individuals, supporting newly diagnosed families, and running fundraising events.  I think most families in Manitoba would be surprised to hear that Alan has no family history of the disease; just a strong personal connection and the motivation to go with it.

This past March, Alan spent a week sleeping in a drafty tent on the roof of a fire hall in Winnipeg.  He got a manicure and a pedicure, was up at 5 a.m. to talk to the media, and did some Zumba dancing.  All in a day’s work.  With the Rooftop Campout committee he helped us raise $50,000 in only four days!

If we add that to the over $600,000 that has been raised in Winnipeg over the last 50 years, we can see how much Alan’s influence and hard work has achieved.

Alan was recently honoured with the Courage to Inspire Award at the Prairies Fire Fighter/Chapter Conference in Edmonton in November.  The Award, given to individuals who have had an enduring relationship with Muscular Dystrophy Canada and exhibited exceptional contributions of either financial resources or time.  Alan Bartley’s 50 years of active volunteer work demonstrates an exceptional commitment to the cause and he was very moved when the room erupted into applause and a standing ovation to mark these five decades of hard work.

Alan will also be recognized for his volunteering legacy at the upcoming Winnipeg Fire Fighter Rooftop Campout.  On Wednesday, March 18th an afternoon shindig is planned in his honour at the Osborne Village Fire Hall (150 Osborne Street) both on the roof and a little closer to the ground.  All are welcome to attend!

On behalf of the families and individuals affected by neuromuscular disorders in our province (to whom you are a great hero), and from the hundreds of Fire Fighters you have mentored and inspired along the way – thank you for dedicating five decades to this cause.  We’ve appreciated every minute.

For details on the event, please click here (you can also donate online) or on Facebook click here.

_____________________________

Kristen Pachet is the Revenue Development Manager for Manitoba and Saskatchewan.

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Keep Coughing! Maintaining respiratory health with neuromuscular disorders

cough assistHaving a nagging cough can be really frustrating. But did you know your ability to produce a strong cough is actually a blessing in disguise? The act of coughing is something many of us take for granted, and is even seen as a nuisance. But if you have a neuromuscular disorder, coughing can be one of the most important things you can do to improve the quality of your life and slow down the progress of breathing problems, infections and weakness.

In these situations, “keep coughing” sounds like a simple fix, but unfortunately, it isn’t. Why? Because as disease progresses and muscles weaken, so does the ability to forcefully cough. And with a weakening cough comes a host of other problems, from reduced lung capacity to increased risk of infection.

“A non-effective cough will lead to a build up of mucous and foreign matter in the lungs,” says Joe Foote, registered respiratory therapist.  “And then lung performance decreases because less air gets in and less gas exchange takes place.”

Foote, who was one of the keynote speakers at our  Empowerment and Action conference  last year, is the owner of Quality Respiratory Care in Fredericton, NB, a company that provides devices to help improve lung capacity, including the ability to cough.

There are four key areas to consider with neuromuscular weakness and breathing problems, according to Foote:

  • Maintaining an effective cough
  • Keeping airways and airsacs open
  • Moving enough air in and out of your lungs
  • Minimizing risk of lung infection

In order to address the four points above, you first need to familiarize yourself with the therapies and choices that are available to you as a patient/client and to appreciate the importance of early intervention.

Foote stressed that early respiratory monitoring is extremely important – and here’s why: “When you first begin to notice respiratory symptoms, you have likely already lost as much as 50 percent of your breathing!”

Therefore, it is crucial to:

  • get early testing on your lungs (before you notice breathing problem!)
  • set up regular testing intervals (e.g. every six months)
  • get expert advice on when to start certain therapies

Have you already noticed symptoms? If so, there are several things you can do in the early onset of a weakened cough:

  • practice self-assisted coughing
  • have a caregiver assist you with your coughing
  • employ “breath stacking” using a Lung Volume Recruitment (LVR) device
  •  or – in more advanced cases – use a mechanical device such as Cough AssistTM.

More information and diagrams detailing all of these options can be found on pages 10-16 of our comprehensive .

Foote concluded that it’s key to start early to develop a respiratory plan with your health team that is right for you. Communicate your wishes clearly, explore equipment options available and choose what works for you now – and what will also meet your needs in the future.

Resources:

In addition to the downloadable guide listed above please also see the respiratory care stories posted in the blog on our website.

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New Ontario institute focuses on chronic disease and ageing

OIRMLet’s face it – Ontario has a large ageing population. Unfortunately, that fact often comes hand-in-hand with the overwhelming cost of managing chronic and degenerative conditions, such as muscular dystrophy and other neuromuscular disorders.

Fortunately, Ontario also happens to be a leader in regenerative medicine research. To support advances in this field and to address the staggering healthcare expenses affecting Ontario’s aging population, the Government of Ontario is funding the new Ontario Institute for Regenerative Medicine (OIRM) – a research and development institute developed to help transform stem cell research into curative therapies for major degenerative diseases.

The goal of this collaborative initiative between the Ontario Stem Cell Initiative (OSCI) and the Centre for Commercialization of Regenerative Medicine (CCRM) is to help treat, manage and work towards finding a cure for some of the world’s most devastating disorders, all the while offering significant economic benefits.

OSCI brings together a team of accomplished stem cell researchers, tissue engineers and clinicians, while CCRM’s commercialization focus and strong network of industry partners will help facilitate academic discoveries and clinical trials.

What is meant by regenerative medicine? This is a multidisciplinary approach that harnesses the power of stem cells, biomaterials and molecules to repair, regenerate or replace diseased cells, tissues and organs.

Stem cells were first discovered in Ontario and this new institute will help reinforce Ontario’s leadership position in regenerative medicine, says Janet Rossant, Interim Director of the OIRM.

“Ontario is the birthplace of stem cell discovery – it’s wonderful to be able to continue this legacy.”

Please see this press release for more information: http://ontariostemcell.ca/sites/default/files/ontario-supporting-groundbreaking-stem-cell-research-1.htm

 

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