This blog follows my life since being diagnosed with terminal Motor Neurone Disease / ALS on 2nd July 2014 at the age of 36. A music addict, travel & photography enthusiast & gay, when diagnosed I was enjoying life in Sydney Australia. I returned to the UK in June 2015 to be closer to family, have access to further healthcare & support to help me battle this brutal disease. Expect posts about the condition, its progression and any issues as they arise.
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.
What a difference a year can make! This time last year I was still living in Sydney, Australia, newly medically retired and visiting the UK & Ireland seeing family & friends, and getting my affairs in order for the big reluctant move back to the UK 3 months later, thanks to MND! I would have done ANYTHING to stay in Australia where I have always felt settled and 'at home'! Since then MND has thrown even more losses my way, I can no longer speak, eat, walk, use my arms, stick my tongue out, whistle, take a photo, write, go on dates, bite my nails, shower myself, put headphones on, wipe my ass, enjoy my favourite foods, shave or cut my own hair, fly on a plane (probably), pick my nose, lie flat (without my NIV), swim, hold my head up, dress myself, use the tv remote ... the list is endless! Despite these, MND cannot take away my spirit, my ability to laugh, smile, joke & enjoy every moment as if it was the last!
That is essentially what the progression of Motor Neurone Disease is about. You can either let these losses take over your life and sink into an abyss of self pity & depression or you can take it on the chin and try to be one step ahead of the disease by adapting.
The battle with MND is one that cannot yet be won but the best weapons to put up a good fight is the power of a positive mind, and a sense of humour! Despite all the losses MND has brought to my life I refuse to let it get me down or dwell on those losses.
There are other positive influences on my day to day life, namely my love of music and two adorable cats who offer cuddles and companionship 24/7. I am convinced they possess a sense that makes them aware that I am ill. Also a wonderfully supportive family, some amazing friends and a fantastic multidisciplinary care team complete my support system.
All of these positive influences on my life make it easier for me to adapt and get through each day, so I am thankful. I know that this is a battle that I will not win but I am grateful to have you all in my army.
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!
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.
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!
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 :
So today is a pretty major milestone in my life! Most people do this in their 60's or 70's with a nice hefty pension to enjoy the remainder of life with, but today I am retiring from working life after 16 amazing years in the travel industry.
Would love to say it's because I've won the lottery or something but as most of you already know, I was diagnosed with Motor Neurone Disease / Amyotrophic Lateral Sclerosis last July and, despite trying to continue as normal as best I can, it has got to a stage where I am unable to work properly without challenges. I can barely write, typing is difficult and my speech is deteriorating too, not to mention losing 15kg since September and my muscles wasting away!
What's next? Who knows, but for the immediate future I'm going to the UK & Ireland for a couple of weeks over Easter to see my family and then returning to Australia to spend 6-8 weeks travelling to places still on my bucket list (Broome, Ayers Rock, Darwin & Noosa / Fraser Island) before permanently moving back to the UK, Yorkshire to be precise, sometime in June.
I've thoroughly enjoyed my years working in the travel industry and have visited some absolutely amazing places (Australia, Canada, Brazil, Malaysia & South Africa to name a few favourites) and have met some great work colleagues & some awesome friends along the way too, who I have a lot of respect for: Rupender, James, Adam, Joseph, Nina, Rob, Rachel, Olivia, Jonathan, Lisa, Antoni, Kerise, Natalie, Annette, Leanne, Rachel, Clare, Dave, Ajanta, Glen, Popo, Gemma and anyone else I may have spent 40 hours per week with over the years - Thank You!
As it turns out my final job was the most enjoyable of my career, and mainly down to the fabulous bunch of people there. Larissa, Koula, Tracy & Denise (and the rest of Southern World Australia who aren't on Facebook!), thank you for your support, patience and understanding with me and for helping me out when I was physically unable to do something.
I'm not sure what the future holds as I'm no longer in control of my life, a bit of a daunting prospect, but I can tell you one thing. I'm going to make the most of it as best I can, and as I always do, with a smile on my face and with a positive attitude! x
😊
PS: If anybody is up for joining me on one of the Australia trips, message me! 🐨
Retirement drinks after my last day working with my awesome Southern World Australia colleagues.
