Smoking

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!

IMAGINE

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

Please Reshare & Help Spread Awareness!

MND, NIV & DNR!

I’ve been rather slack of late as I’ve had quite a few emails and messages on Facebook from friends asking how I’m getting on with things and haven’t replied as yet. So rather than reply individually, which will take me all day, here’s the latest developments!

It’s been about 6 weeks since I had my peg tube put in, and after a couple of up and down weeks getting used to it, things seem to be levelling out a bit now. My daily diet consists of a 1.5 litre bag of liquid multi fibre and protein and this is fed by a pump through my peg tube. The feed has to be connected for approx 12 hours per day which can be challenging but I’ve worked out a rather good timetable. I have started to gain some weight using the peg finally which is great even if only small amounts at a time. I no longer can eat or drink through my mouth, the best I can manage without choking is a few small sips of juice at a time, just to get some flavour. 

I can barely talk anymore either, despite trying my hardest but that only wears me out and makes me breathless and tired in the end. I do have up and down days where my speech can be a bit clearer but generally you will probably catch only a word or two so I try to use my text to speech apps on my iPhone / iPad when I can. It can be frustrating at times but I’m getting used to it. 

As MND is a muscle wasting disease, I’ve recently found my diaphragm weakening which supports the lungs and breathing amongst other things. With a weakened diaphragm it can be hard to cough up anything from the lungs (liquid, mucus, etc) which could then lead to a potentially life threatening chest infection. Even a simple cold or flu could be fatal! I have a rather nasty machine I hate using called a cough assist machine which blows air into the lungs to expand them then sucks all the air & any gunk in the lungs out! 

Last week I was also given an NIV (Non Invasive Ventilation) machine which I’m supposed to sleep with on every night. The NIV is supposed increase the oxygen levels and help exhale unwanted carbon dioxide. It also takes some of the effort out of breathing at night as the chest muscles don’t have to work as hard & helps ease breathlessness! So far I have only managed one night with it on for 7 hours as it’s hard to get used to. A work in progress at the moment!

My right arm is still useless and three and a half fingers on my left hand still work. My legs still work but are noticeably skinnier and quite wobbly on my feet now. If we go out now I get Mum to bring a fold up wheelchair as I can’t walk very far without feeling exhausted! On 22nd September I will be getting my motorised wheelchair delivered so looking forward to whizzing about at 2mph but need to figure out how and where to get a good deal for a motability disabled car so we can get out to places, sadly can’t just chuck the motorised wheelchair in the back seat!

Other than that, mentally feeling fine, happy, smiling as always, although filling in a DNR (Do Not Resuscitate) form was a bit of a surreal experience! Lol! Last time I posted an update there were a few comments about how ‘inspirational’ I was. It’s really not about that, and I’m not looking for compliments or praise, just wanting to update friends and family who may want to know the latest. When faced with challenges in life, any challenges, you have two choices. You can sink or you can swim. I just chose to swim.

Carer of the Year Award 2015!!

I would just like to take this moment to say thank you to someone who has been nothing short of amazing since I moved back from Australia just over two months ago to start my battle with MND. 

Arranging doctors, specialists appointments & operations, collecting prescriptions, making phone calls, filling forms, writing emails, driving me everywhere and basically giving up her life to virtually be my 24/7 carer. I don't think I could have coped doing any of this alone. 

Mum, I am grateful for everything you do for me, it doesn't go unnoticed. I know you will say any mother would do the same for their son but you take caring for your family and those you love to the next level!

Thank you Jude Sellmeyer - You Are A Legend!

Still Alice & Back to the UK

I watched the movie 'Still Alice' last night on a flight from Sydney to Singapore. Yes, I'm travelling again and have been ticking off lots of places in Australia from my bucket list over the past two months hence the lack of blog updates! Tomorrow I leave Singapore for London to permanently remain in the UK and commence my battle against Motor Neurone Disease, which is slowly tightening its grip on me.

Anyway, back to the movie, the story is about a linguistics professor in her 40's, Alice, played by the fantastic Julianne Moore (she won best actress Oscar for this movie in 2015), who is diagnosed with early onset dementia. The movie follows her struggles to adapt as the disease takes hold of her.

There is one scene about 2/3 of the way through where she does a speech at an Alzheimer's conference and I was able to relate so much to some of the words spoken in the speech. I just Googled it and this is from the script ...

"All my life I’ve accumulated memories - they’ve become, in a way, my most precious possessions. The night I first met my husband, the first time I held my textbook in my hands. Having children, making friends, traveling the world. Everything I accumulated in life, everything I’ve worked so hard for - now all that is being ripped away. As you can imagine, or as you know, this is hell. But it gets worse.

For who can take us seriously when we are so far from who we once were? Our strange behavior and fumbled sentences change other’s perception of us and our perception of ourselves. We become ridiculous, incapable, comic. But this is not us, this is our disease. And like any disease it has a cause, it has a progression, and it could have a cure. My greatest wish is that my children, our children - the next generation - do not have to face what I am facing. 

But for the time being, I’m still alive. I know I’m alive. I still have people I love dearly. I still have things I want to do with my life. I rail against myself for not being able to remember things - but I still have small moments in the day of pure happiness and joy.

So, 'live in the moment' I tell myself. It's really all I can do, live in the moment. And not beat myself up too much for mastering the art of losing."

I definitely recommend checking out the movie. Here's the YouTube trailer :