What is MND/ALS?

What is MND/ALS?
MND/ALS is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe, and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. In most cases, it does not affect intellect, memory or the senses. Progress is relentless and generally rapid, with a life expectancy of between 2 and 5 years from the onset of symptoms. There is no known cause and there is no known cure. See links on the right for further information.

Friday, 19 February 2016


I started the disgusting habit of smoking  back in 1991 at the age of 13. Looking back I don't know if it was a lame attempt to be 'cool' or just something to do to pass the time growing up in rural Ireland. Maybe it was a combination of both! After a year I finally learned how to inhale after somebody pointed out I was doing it wrong. So much for looking cool! The remainder of my teens were spent feeling rebellious and the thrill of trying not to get caught by parents or teachers. Art classes were spent with permission from the teacher to go sketching (ie: smoking) on the school grounds with one of my best mates. 

I carried on smoking through my 20's much to the disgust of many dates who I never heard from again. Now living in London, I knew that it was unhealthy and stank but for me smoking relaxed me. It was also a form of escapism. If I had downloaded a new album or created a new playlist I would sit in the garden or go for a walk with headphones on, cigarette in hand and zone out from the world. I enjoyed it. By my late 20's however I had had enough and tried to quit multiple times with no success. I tried cold turkey, patches, pills and gum. Nothing worked. 

In July 2011, a very close friend, Jon, died suddenly at 32. He was also my first boyfriend and we had been together for about two and a half years from 1998. We remained very close after we broke up until he passed away. Over the years he always urged me to quit smoking and so when he died I thought quitting would be the perfect tribute. I had a cigarette before I went into his funeral and came out a determined non smoker. This time for some reason it seemed easy. No cravings. Admittedly replaced smoking with a lot of chocolate and sweets, much to the disgust of my six pack which gradually disappeared! I do believe in some spiritual way that Jon was helping me quit.

A couple of years passed by and I stayed off the cigarettes and moved to Sydney, Australia with my partner in August 2013. It was meant to be a fresh start and a dream realised until July 2014. In the space of a month my relationship broke down after quite a few months of ups and downs, I moved out and in with a friend, changed jobs and then finally the icing on the cake, after 9 months of tests I was diagnosed with Motor Neurone Disease. Terminal but slowly progressing apparently, a second opinion later confirmed that progression wasn't slow and it was more bulbar, affecting the ability to talk, eat and hold my head up first. The thing was at that time I felt fine, my only complaints at that stage were ridiculously strong muscle spasms and fasciculations in my right arm and right leg, and some visible muscle loss next to my right thumb. Other than that I felt fine. 

I decided to research ways to calm down the muscle spasms. My GP had prescribed Baclofen to relax the muscles but that just made me feel groggy and physically heavy. I then read about the benefits of medical marijuana online and thought back to the handful of times I smoked weed and how relaxing and floaty the feeling was so I decided to give it a try. I had a routine for most of September 2014 of getting in from work, smoking a joint of half weed and half Marlboro Gold cigarette tobacco then going to bed and waking up for work the next morning. Sure it relaxed me but I wasn't so keen on wasting my existence just working and sleeping! Plus drugs had never been my thing anyway and I can proudly say I have never popped a pill or done coke. After a few weeks I decided to stop buying weed as it wasn't having the desired effect however the problem now was that I found myself smoking my Marlboro Gold cigarettes between the weed, even bringing packs to work and on nights out. I hated myself for it as after over three years of being one of those ex smokers, I was on a helter skelter style slippery slope to being a smoker again.  

Fast forward to now, February 2016, MND has progressed, I am now wheelchair bound, unable to speak or eat & have about 10% use of my hands and arms. I also use non invasive ventilation (NIV) to regulate breathing and support my lungs as my diaphragm weakens. The predicament I am facing and the reason for this blog post is at what point do I give up giving up smoking? My answer to those shocked that I smoke since my diagnosis has been 'What's it gonna do? Kill me?' in a blasé way. I still hate the stench and smell of cigarettes but still enjoy the relaxation it provides. I have been noticing my chest becoming tighter recently, unsure if it's the smoking or MND, but either way I am reluctant to raise the NIV level as once it gets to its upper limit it won't be able to provide any further support. On the flipside, if I quit now there is a high chance that during the lungs clear out detox some dislodged tar and/or phlegm could get stuck in my airways, seeing as I can no longer cough anymore. It's a catch 22 scenario! When I have already lost so much, it's nice to be able to hold onto at least one thing, even if it is a bad habit!

Wednesday, 10 February 2016


Imagine your favourite song coming on the radio and not being able to sing along? 

Imagine only being able to smell your favourite foods? 

Imagine your only form of communication is typing with your eyes? 

Imagine not having the strength to push the charger cable into your tablet / phone? 

Imagine being unable to quench your thirst on a hot summers day?

Imagine the indignity of relying on someone else to shower & dress you everyday? 

Imagine having to use a machine to help your lungs expand enough? 

Imagine going to the beach and not being able to lie on the sand or swim in the sea?

Imagine being three conversations behind by the time you can share your thoughts?

Imagine living a life of travel & adventure & then suddenly being confined to a wheelchair?

I don't have to imagine any of these things. These are just a selection of realities for me at 38 with Motor Neurone Disease that I used to take for granted. I never imagined anything like this would happen to me. Nobody ever does. I hope that one day soon a cure, or at least treatment, is found so that these scenarios can remain in your imagination. 

You can help by donating to the MND Association or fundraising at your next marathon or sporting event at http://www.mndassociation.org/get-involved/donations/

Alternatively you can donate straight to the source of research at the Sheffield Institute for Translational Neuroscience - http://sitran.org/support-us/ 

In the meantime I will keep fighting & making the most of every single day supported by amazing friends & family

#MNDWarrior #ALSWarrior #MNDArmy #MotorNeuroneDisease #MND #ALS

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