Botox and...a break!

by Helene Louise  

It has been six months since my daughter had Botox injections as I wrote about earlier this year, followed since then, by almost daily exercises and weekly occupational therapy appointments. All these months later, however, much like the effects of the Botox itself which slowly faded away, so is our motivation.

Maybe it’s because at this point, we know that thankfully, my daughter has been able to keep much of the gains we were able to make while the Botox loosened the muscles affected by the stroke and facilitated her ability to progress. Maybe it’s because at this point, with the progress she’s been able to demonstrate, we know that, also thankfully, we are in line again to have the privilege of another similar treatment (which will, of course, require mustering up another sustained burst of motivation to support our efforts). Maybe it’s because at this point, with another long school year behind us, it’s normal feel fed up and want to take a break from everything that is routine. The weather is beautiful, the days are long and there are other things calling out to be done—books to read, trails to walk, laughs to laugh and other activities with my love ones that don’t necessarily start with “I should really…” September will be here soon enough and then, whether we have the motivation or not, we will all have to get back into the routine of “I should’s” and “I have to’s” .

So at this point, the motivation I have is to minimize the “must do’s”, take a bit of a break from the “I should’s” and try to enjoy these precious summer days as much as possible. Happy summer!


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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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