Linda Lafontaine from Canada has Hereditary Spastic Paraplegia (HSP), which she has been dealing with for the past 17 years. Linda is very motivated to help others and volunteers as an ambassador at the Spastic Paraplegia Foundation to spread awareness for HSP.
I’m 47 years old and I live in Ottawa, Ontario, Canada. I am medically retired – that just means there is a medical reason for a 47-year-old to be retired. I am French-Canadian and I have Hereditary Spastic Paraplegia (HSP). My SPG7 is affected and the genetic mutation is recessive. It’s also pure – which means that I’m super lucky that my disability is limited to my lower limbs and bladder but nothing else.
Although I was born with this condition, I only started noticing issues around 29/ 30 years of age. I sought the help of a neurologist and also of a geneticist. Long story short, I have been dealing with this for 17 years… but I adapted. I have terrible issues with my balance. I fall very, very frequently and hold on to EVERYTHING. Eventually, holding on to everything wasn’t enough. I needed to use a cane to support myself on top of that. Eventually, a cane wasn’t enough either and I “graduated” to a regular walker (mine was a NEXUS III). The nimbleness of the regular walker was no longer enough to suit a 47-year-old avid hiker. So I moved to a more rugged walker in the VELOPED by Trionic with sealed brakes and big pneumatic tires. I also have serious bladder issues. At first, I managed them with medication and eventually “graduated” to Cystoscopies (performed by my Urologist every 6 to 7 months). I also followed a regular physiotherapy routine and had custom AFOs (Ankle Foot Orthotics) made to support my foot drop – with a hinge at the ankle so I can walk.
With the guidance of my physiotherapist and my doctor, I gained somewhat of an understanding of how my muscles work. So although I don’t currently see my physiotherapist every week I have to work on my muscles ALL THE TIME or endure stiffness, pain, or inflammation. Now I have a recumbent tricycle by Catrike and I use it about two to three times a week to keep the weight off and maintain limber muscles. I do basic weight lifting and stretching as well, as best I can anyway. I’m not 100% successful in keeping pain out of my life all the time but I do very well.
As for the mental part of living with HSP – I volunteer A LOT. Volunteering keeps my mind sharp, makes me feel good about myself, keeps my mind busy so I don’t dwell on the HSP-related problems in my life. Volunteering also keeps me in control of my time – I don’t owe anything to anybody AND if I need time for appointments/ therapy, I don’t need permission.
As I mentioned before, I just want to help people. So with that in mind, my volunteering concentrated on advocating for disabled people. Slowly, I started translating as well. At first, it was a way to focus on my bilingualism and not think about my disability. Concurrently, I volunteered as an Ambassador for the Spastic Paraplegia Foundation (SPF). That role permitted me to establish many, many contacts in the SPF community. One of those contacts lead me to translate for a Doctor at McGill University who is an expert and researcher in my condition – Hereditary Spastic Paraplegia (HSP). Another of these contacts reached out and proposed to transfer her entire charitable foundation to me. So, my volunteering, bilingualism, and fundraising skills have allowed me to spread HSP awareness.
The point is that I do pretty well for myself. Life threw me curveball after curveball but I managed, I even thrived. And through support groups on Facebook and organizations like the Spastic Paraplegia Foundation, I have found a huge resource of like-minded individuals. This has quickly led me to find Hope for Ataxia. Goodness only knows where that will lead me – but with our desire to spread awareness, advance research, and find a cure for all Ataxias, it can only be good.
Someone once told me that “Alone we are weak, but together we are strong.” Although I can’t predict the future, I’m very hopeful that together we can make a huge impact.
Thank you for spreading awareness and keep up the good work Linda!
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