Multiple sclerosis: “I try to preserve my muscles as much as possible”

Hello LR2012, thank you for agreeing to share your story with us on Carenity.

First of all, could you tell us a little bit about yourself? 

I am a 40-year-old-man. I live and work in Villeurbanne, outside of Lyon, France.

My interests are: 

• Sport (which I used to do quite a lot when I was younger) and which I have partly rediscovered through the organisation HandiCapEvasion, and swimming,
• The fate of our planet (with its inevitable warming),   
• Community building and social projects (society today seems to me inexorably harsher... and revolting). 

Photo courtesy of LR2012

You have multiple sclerosis. Could you tell us how it came into your life? What were your initial symptoms? What prompted you to seek help? 

About this Malicious, Sneaky "companion" that has kept me company since the age of 23...

The first signs appeared during my classes when I was studying to become an engineer. At that time, the density of work and the rhythm of study were intense.

Quite naturally, I used sport as a way to decompress.  

It was at this time that the first physical dysfunctions appeared (visual problems when jogging, tingling in the left leg and right arm, temporary loss of feeling in the fingertips, etc.).  

At that time, on the advice of my friends and family, I went to several medical appointments (ophthalmologist, cardiologist, pulmonologist, etc.) and was given no clear diagnosis.  

Certainly, these medical questions took too much of my mental space and prevented me from continuing my engineering studies in peace. That's how I felt, anyway. 

So, I had to stop my engineering studies quite abruptly (I had low marks in maths combined with a "medical cloud" surrounding me). Fortunately for me, my friends and family helped me to bounce back, and I was able to later study engineering at university.

When were you diagnosed? How did you handle the diagnosis?

I was studying in Poitiers for my university exams and after having a tingling episode, I decided to go for my Sunday jog. During this jog, when I went to lift my left leg, it didn't respond and I literally fell on the ground... Hmm, that's strange! 

A series of medical appointments and a lumbar puncture, together with MRI scans, led to the diagnosis.  

I was 23 at the time (2004) and I finally knew what was going on. I remember it was a big blow. But hey, I was about to win my first victory against my MS, having managed to get a qualification level that allowed me to make important choices and start my career. 

After that, I logically entered the workforce. This period, which lasted about 8 years, before things stabilised, was quite complicated. I had a succession of ten or so employers, ranging from service delivery to office work in the manufacturing sector.  

Although I was recognised as a disabled worker in the meantime... I had to deal with lamentable work situations (in terms of hygiene, interest and even purpose... apart from making money).  

I am not saying that money is not to be considered when taking a job, but it seems to me that there is knowledge to be advanced...and that money remains a means... 

Finally, in 2012, I found an article explaining that the National Centre for Scientific Research (CNRS) needed respect its "rate of disabled workers". I took a chance and it worked. A position as a mechanical engineer was opened with a view to tenure. It was a great opportunity for me to combine my technical knowledge with the status of disabled worker. I have now been in post for a little over ten years, and I humbly help to advance research... 

Had you heard about multiple sclerosis before your diagnosis? Did you do any research of your own?  

At the time, I didn't know much about MS (apart from a distant memory of a teacher at school who had the condition and used crutches to get around...). But apart from this memory, I didn't know MS. 

Logically enough, I had the reflex to go on the internet... The information I found was hard to swallow! 

What impact has MS had on your private and professional life?  

As far as my private life is concerned, MS has had quite devastating effects... certainly in combination with my (mentally) hard character.

I had, and still hope to have, a simple, calm, and fulfilling love life. The big disadvantage the disease has had on me is my inability to initiate things (due to many factors created by the MS) combined with the fact that I have always been a very shy person. Although with maturity, this trait seems to be changing for the better. 

I don't know if I'm well enough placed to talk about employability. 

That said, I heard of a sports club in Lyon (HandiSportLyonnais), which allows people with disabilities to practice different sports, including swimming. I think that this sport, combined with the job at the CNRS, allowed me to see the "positive sides" of the MS. And on top of that, I also discovered HandiCapEvasion, which brings together able-bodied and disabled people for hiking trips in the mountains. This association was like a breath of fresh air for me because it has allowed me to go back to hiking in the mountains for a few years now, thanks to a joëlette (an all-terrain wheelchair with one wheel). And as I loved walking when I was younger, it's great! 

This organisation is great because I think it helps to get people with disabilities out of the rut they can fall into, or are but into by society...

Have you had to change your lifestyle or habits since you were diagnosed with multiple sclerosis? If so, in what way? 

I have clearly had to adapt my way of seeing things on many levels: my diet, social, sporting and especially professional life. 

In terms of food, I am convinced that we are what we eat! So, I enjoy cooking simple and tasty food for myself, with vegetables from the market. And it seems to me that it also helps me to keep a certain amount of physical activity. 

In terms of social life, MS more or less voluntarily puts us on the side-lines. That said, I have found a good network of friends. The serenity of work at the CNRS has also helped me. 

With regard to sport, once again, the CNRS, through its social fund, enabled me to buy a tricycle which, for the past two years, has given me back the mobility to which I am fundamentally attached. My loss of balance, which was getting worse, has been brilliantly combined with this new mobility.  

I try to preserve my muscles as much as possible (via swimming, hiking and the gym in Lyon). The gym is quite brilliant in the sense that it allows people with disabilities, or those who are still able stand, to do adapted strength training workshops.  

Dos physical activity have an impact on the symptoms and progression of MS? 

Personally, I am convinced of the need to preserve as much of my body's muscular, pulmonary, and "kinaesthetic" capital as possible.

I am also convinced of the positive impact that sport has on our bodies. For me, it allows me to maintain a social link, to let off steam and therefore to be able to flourish. I swim as much as possible; I ride a joëlette as much as possible and I continue to do physiotherapy as much as possible. 

What do you think of patient exchange platforms like Carenity? Have you found the advice and support you are looking for?  

I admit that I find it difficult to give an opinion on platforms like Carenity, as I don't use it very much or enough... 

But on the existence of this type of platform, it seems like a good thing to me! I guess it makes people feel less alone with MS and other conditions. 

Any final words?

It seems to me that the pandemic has limited our ability to practice sports, or at least that was my case. And the need for a health pass led to me getting vaccination. Because without the pass, I can't do sports, and that's just not possible for me. 

Many thanks to LR2012 for sharing his story with us on Carenity! 

Was this testimonial helpful to you? 
Give it a like and share your thoughts and questions with the community in the bottom below! 
Take care!