En français - format papier

by Helene Louise  

(For English text, see below.)

Pour ceux qui se sont dit intéressés à avoir mon livre en français sous forme papier…le voilà! 

La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé, maintenant disponible auprès d'Amazon.ca sous forme papier et numérique.

Mes sincères remerciements à mon amie transatlantique, Anne-Catherine de l’Association hémiparésie, pour son encouragement en cours de route.

Merci en bonne lecture!

__________

For those who expressed an interest in a paper copy of my book in French…here it is!

La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé, now available on Amazon.ca in paper and e-book formats.

My sincere thanks to my trans-Atlantic friend Anne-Catherine of the Association hémiparésie, for her encouragement along the way.

Thank you and happy reading!


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Be a Voice

by Helene Louise  

I spent my youth singing in choirs and I love the idea that in a choir, each individual can add their voice to all the other individual voices, each person sharing what they have to give, to create something magnificent that cannot be created alone. 

As part of their pediatric stroke awareness-raising campaign this year, the International Alliance for Pediatric Stroke (IAPS) is publishing stories of children whose diagnosis of stroke was delayed. Today, I am happy to have our experience added to the diverse and touching stories you can read about on the IAPS website as part of this initiative. 

As in a choir, our voices and backgrounds can be vastly different, but by joining together, something magnificent is being created, which cannot be created alone.


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Botox, Beauty and Bell's Palsy

by Helene Louise  

As I wrote in January, in order to develop a case study for a McGill University class at which I made a presentation earlier this year, I had to look back through my old files to revisit specific challenges my daughter and I faced after she was first diagnosed. I know I’ve been very dedicated to helping her overcome the effects of a childhood stroke but looking back at the assessments of those early appointments, the references to my younger self made me laugh out loud. For example, a report from 2004 described me as “…incredibly compliant and creative regarding treatment ideas and follow-up” and that the therapist was “…pleased with the dedication of Helene to provide her daughter with the best movement opportunities…”

I specifically remember when my daughter first started occupational and physiotherapy, long before she had learned to speak and could tell me how she was feeling, I was often told by the therapists that the extra effort she would be expending to try to work muscles that weren’t responding, would be very strenuous for her. And as a result, I should expect her to be more tired. Intellectually, I understood what that meant and emotionally, I’ve always tried to be understanding. But it was really only two years ago when when I was unwell for a time, that I could understand what it felt like to be in her position.

After feeling under the weather for about a week or so, I developed an earache. I didn’t think much of it but the next day, I woke up unable to move the muscles on the left side of my face. Diagnosis: Bell’s palsy. It was a temporary inflammation of a facial nerve that left me unable to use the related muscles, which in this case, meant exactly half of my face. I couldn’t close my left eye completely, I couldn’t raise my eyebrow, I couldn’t smile and I couldn’t pronounce certain consonants like “s” and “f”. It was a frightening experience but luckily for me, within a month or so I had recovered. 

The experience, however, left me with some very important lessons. The first one is that I had never realized how much I love smiling at my daughters. And, in terms of parenting, how much I rely on that one action alone as a steady source of encouragement and reassurance for them. Secondly, the experience was a blunt reminder of how fragile our lives are. Literally overnight, the simple things we take for granted—like our ability to smile at our loved ones —can be lost. And finally, in the context of my daughter’s rehabilitation after a childhood stroke, my experience with Bell’s palsy left me with a greater understanding of how things must feel from her perspective, in a way I couldn’t have imagined without experiencing it myself. Although I had been told early on that her efforts as related to occupational therapy exercises would be strenuous and tiring for her, it wasn’t until I was struggling myself with muscles that weren’t responding that I could really appreciate what it meant. 

In our current situation of intense occupational therapy while the Botox is making it easier for my daughter to use her hand, my experience with Bell’s palsy has brought me a new level of compassion. Not only for my daughter, in terms of how hard she’s working to try to make progress, but for all the children and adults who have to work so hard to compensate for muscles that aren’t responding as well as they should. Their courage to continue persevering to do the simple things that so many take for granted, is truly admirable.

 


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Botox and Beauty

by Helene Louise  

Years ago, if I heard the word “Botox” I immediately thought of speculation in the gossip magazines about whether or not a Hollywood star was suspected of having rejuvenated their appearance using Botox injections. Botox, (for those not as familiar with gossip magazines as I used to be), temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time, to appear less wrinkly. However, as I’ve learned in the context of my daughter’s rehabilitation after a childhood stroke, Botox injections have a much wider application, such as addressing muscle tightness related to various conditions including the effects of strokes, even in children.

At the beginning of January, my daughter had the privilege of receiving such a treatment here in Montreal. Botox was injected into her arm and hand to try to relax those pesky muscles that despite all of our rehabilitation efforts over almost a decade and a half, remain so tight that they limit the use of her right hand. As is the case in the context of beauty treatments, in the context of physical rehabilitation, Botox temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time to, not appear less wrinkly as in the glossy magazines, but to work really, really hard during that little window of opportunity to try to strengthen the opposing muscles enough so that hopefully, when the Botox wears off and the muscles that were injected go back to their usual state of tightness, greater mobility and dexterity remain.

This sounds easy and straightforward but in real life, or at least in my life, not so much. Since the Botox took effect, we’ve been getting up extra early every morning to do what we’ve been calling the “hand Olympics” because with the stress of any given work/school day for each of us, and the regular homework/activity schedule in the evenings, it’s the only way we can consistently fit in the effort required to make any progress at all. And, it does feel like we’ve been training for some kind of Olympic event only on a teeny-weeny micro level where heroic achievements are measured in micro-millimeters. Thankfully, we have seen progress. In the darkness of the early morning hours, we’ve been thrilled to see my daughter’s hand be increasingly responsive and see what is possible for her when the muscles aren’t working against her.

Now however, at about the three-month mark, we’re at the point where the Botox will start to wear off. Will any of the progress we’ve seen, remain once the Botox has worn off? Will we have anything to show for the many early morning hours we’ve put in somewhere between a quick breakfast and the start of another long day? I’m not sure. Still, I remain hopeful. Even if those pesky tight muscles are so stubborn that afterwards, the tightness from the stroke overrides the gains we’ve seen over the past three months, I will see beauty. Unlike the glossy magazine covers, I’ll of course have all the same wrinkles as I had in January, maybe even more because it’s been stressful to try to fit this in every day and try to remain patient (I need to refer back to my own book to remind myself about the challenges of staying patient in the context of physical rehabilitation...).

But, throughout this period of intense effort, with a daily opportunity to annoy each other before most people are even out of bed, we continue to do our best on a shared goal. Helping her as a teenager is certainly very different from the period of time I wrote about in my book, when she was a young child and everything could be turned into a game. But, we're still working together, we're still coming up with new ways of doing the exercises and we're still finding ways to make each other laugh.

I certainly hope that in the next few months my daughter will have the satisfaction of keeping at least some of the increased mobility she's working so hard to gain. Either way, she'll have a clear memory of what was possible which will surely be a powerful motivator and an important reference point for her future efforts. Along with the fact that even bleary-eyed, we're still cooperating and laughing together more often than we're not, this is the beauty in the Botox that I'm seeing right now.


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Crisis Turned Into Case Study, Over Christmas

by Helene Louise  

This past holiday season, in and around the usual activities like trimming the tree, cooking for my family and wrapping presents, I did something I’d never done before — I spent a considerable amount of time developing a case study to be used as a learning activity in a university classroom.

Further to my presentation at McGill University’s School of Physical and Occupational Therapy last year, I was asked if I could help develop a case study or “Professional Reasoning Seminar” that could be integrated as a learning activity along with my presentation. I thought it was such a wonderful idea to develop a scenario whereby students would read a clinical write up of a case involving a young girl recently diagnosed with a pediatric stroke, then read the parent’s perspective of the situation as I’ve described it in my book, and then, hear me talk about the themes in my book in a way that I think is most relevant and empowering to young people who will soon be joining the workforce.

In terms of the writing process in this case, initially I found it terribly difficult to look back through my old files to revisit the specific challenges we faced when my daughter was first diagnosed and write about it in a very clinical way, without the themes of hope and perseverance that I’ve derived from our experience since then.

But, as the hours went by and I saw the case study taking shape on my computer screen, knowing what I know now, how much hope and potential there was even when I couldn’t see it, my discomfort slowly turned into a quiet sense of triumph — that fifteen years later we have come so far and I’ve somehow found the strength to turn what was such a difficult period in my life into something that has the potential to make things better for other families in the future.

This week, I had the privilege of speaking to a new group of students and afterwards, the opportunity to watch and answer questions as they worked in groups to develop strategies and solutions for the young patient in question. To some, it may seem strange that I would spend part of my Christmas holiday working on turning what was a personal period of crisis so many years ago into a case study. But, having the opportunity to start the new year seeing my efforts used so constructively was a gift indeed...!


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