Epilepsy Sparks

How Do You Become A Competitive Cyclist When You Have Epilepsy?

How Do You Become A Competitive Cyclist When You Have Epilepsy?


I’d like to tell you a story about an incredibly inspiring woman named Leanne Richardson1.

Leanne and I met at an Epilepsy Action2 about 3 years ago, during which Leanne had an ongoing cluster of focal seizures3. Along with another friend who was attending, I stayed with Leanne just to check that she didn’t hurt herself and so that we could call the onsite paramedic should they be required.

Leanne wanted to be left alone both during and after her seizures. She wasn’t in the best of moods – understandably! Honestly, Leanne was passive-aggressive; which is very common in those who’ve had seizures – I mean seriously: if we’re having a seizure or if we are in the postictal4 stage (recovery period after a seizure) most of us do not fancy chatting or having anyone talk to us! The words embarrassment, fear, agitation and upset come to mind!

Little did I know that Leanne and I would go on to have a friendship that was alive and kicking years later.

Leanne and I were texting quite a bit after the event and she turned out to be hilarious. Leanne also has conditions called Sensory Processing Disorder5 and Auditory Processing Disorder6 which lead her to have some traits similar to those found autism7. We joke around that she prefers contact with her horses over humans!

3 years ago, Leanne (who is based in Glasgow8, Scotland) travelled down to Canary Wharf9 in London (where I’m based) on the train and I met her at one of the stations. A few minutes after meeting, Leanne had a focal seizure. This seizure didn’t last too long so we just walked over to a Starbucks to chill out and relax. After about 20mins Leanne started having another focal which then quickly spread and turned into a tonic-clonic seizure.

Luckily, I was there to help Leanne onto the floor and clear the area so that she didn’t hurt herself. The Starbucks and Canary Wharf staff were great too. I, of course, timed the seizure and then called an ambulance (amazing London NHS10) after 5mins. The seizure lasted 9mins. Awful.

The paramedics were keen to take Leanne into hospital – but she wasn’t having it! Her postictal stubbornness we find kind of funny in retrospect but it wasn’t funny at the time because I was worried – 9mins was a long seizure!



Leanne and I made a deal – that if she wasn’t going to go to A&E she’d have to come and stay with me instead. She agreed.

After we’d collected her belongings from the hostel in which we had been going to stay, we finally arrived at my place. Well, it was a horrific weekend for her.

I kicked my boyfriend out of our bedroom so that I could keep an eye on Leanne. She had approx. 6 seizures on the first night (ambulance called) and 6 on the next (ambulance called again).

Over the weekend I had to ask my boyfriend to keep an eye on Leanne for a few hours because I was worried about the loss of sleep that I might have a seizure (luckily, I didn’t!). On the second night, she was taken to hospital because she wasn’t able to decline – and she was having too many seizures; this wasn’t the “norm” for her.

Leanne has virtually no recollection of this weekend never mind the whole month. Yes, she ended up in the hospital for a month.

Leanne ended up in status-epilepticus11 and was allergic to one of the AEDs given to her. It was a frightening time for her and us. She was not in the hospital with which she was familiar, and the hospital didn’t have instant access to her medical file. Leanne kept having seizures and understandably felt uncomfortable and frightened. Like many of us after seizures; she didn’t fancy eating and because she had so many seizures it was hard for her to eat enough; which isn’t great for any type of recovery.

Given that she hadn’t planned to spend a month away from home Leanne didn’t have enough medication – this was stressful as well. As awful as this was, we can both look back in retrospect and at least be glad that we knew each other – I was able to inform the paramedics and hospital staff of her epilepsy and go and get the AEDs for her.

Indeed, our mutual friend Clair Cobbold (who wrote an incredible post for us last year12) visited Leanne multiple times over the month also. She’s amazing too.

Leanne had physical injuries as a result of prolonged seizures which required intense rehabilitation. She learnt how to walk again (although still has partial weakness on the left-hand side of her body).

Today, you would not believe what Leanne has gone through. She still has intractableepilepsy13 but is so strong. Leanne took up cycling to help her rebuild her strength after seizures without putting too much pressure on her joints (she also has arthritis14 as a comorbidity) and now she cycles not just virtually every day, but she competes!!

Leanne has found cycling to be essential to her mental health and wellbeing (well in addition to her beloved horses!). It raises her mood, gets those endorphins pumping, distracts her from negative thoughts – and is great for her physical health too!

Leanne could choose to allow her worries about her epilepsy keep her up in Glasgow all the time but instead, she challenges her fears and travels down to England often – to cycle and see me (well, that’s what I try and tell myself)! 


Leanne has completed a Level 2 Bicycle Coaching course and is the Welfare Officer at her cycling club the Glasgow Gals15. She has recently featured in the Glasgow newspaper: TheEvening Times16 for taking part in The Glasgow Nightrider17; where she raised almost 50% more than her initial target18 for Off The Wall19 (a charity founded by Paul Newman20). All I can say about her is: wow.

Those of us with epilepsy know what tomorrow will bring, or even what may happen tonight. Leanne is aware of her limitations and her risk of SUDEP21, but she still pushes herself to achieve. That’s what I call: inspiring.  



Connect with:

Leanne Richardson        

Inspirer, Cyclist, Horse-lover



Written by:

Torie Robinson

 

Epilepsy Sparks CEO - Working with:  Google, CBSi, KPMG, BUPA, NHS, DWP, HuffPost, BBC, Sky News, and more


International Public Speaker & Consultant - Epilepsy, Mental Health, Diversity & Inclusion

Does your company require an inspiring speech or some consultancy on epilepsy, mental health, and diversity & inclusion? Contact: torie@epilepsysparks.com


               


References:

1.        Facebook: https://www.facebook.com/lcrichardson90

2.        Epilepsy Action: https://www.epilepsy.org.uk/

3.        Epilepsy Action: https://www.epilepsy.org.uk/info/seizures/focal-seizures

4.        Epilepsy Foundation: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure

5.        Star Institute: https://www.spdstar.org/basic/understanding-sensory-processing-disorder

6.        NHS: https://www.nhs.uk/conditions/auditory-processing-disorder/

7.        Autism Speaks: https://www.autismspeaks.org/what-autism

 

8.        People Make Glasgow: https://peoplemakeglasgow.com/

9.        Canary Wharf: https://canarywharf.com/

10.     London Ambulance Service NHS Trust: https://www.londonambulance.nhs.uk/

11.     Epilepsy Action: https://www.epilepsy.org.uk/info/firstaid/emergency-treatment-seizures-last-long-time

12.     Clair Cobbold (Epilepsy Sparks): https://www.epilepsysparks.com/Seizure-Freedom-is-a-Funny-Thing

13.     NCBI: https://www.ncbi.nlm.nih.gov/pubmed/21206438

14.     NHS: https://www.nhs.uk/conditions/arthritis/

15.     Glasgow Gals: http://www.glasgowgals.co.uk/

16.     The Evening Times: https://www.eveningtimes.co.uk/news/17718407.over-the-wall-meet-the-cycling-enthusiast-raising-funds-for-kids-charity-founded-by-a-hollywood-legend/

17.     Nightrider: https://www.nightrider.org.uk/

18.     Leanne Richardson Nightrider Virgin fundraiser: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=LeanneRichardson6&pageUrl=1

19.     Off the Wall: https://www.otw.org.uk/

20.     IMDb: https://www.imdb.com/name/nm0000056/

SUDEP: https://sudep.org/i-want-information

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