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.

Tuesday, 31 March 2015


Well I survived the 17,000km journey from Sydney to London! I didn't suffer with any of the issues I was paranoid about in my previous blog post, apart from one issue with my chest infection an hour before landing in London where I couldn't budge a chunk of mucus that had lodged itself in my windpipe but I calmly dealt with it without panicking!

I have to commend British Airways on the way they looked after me on the flights, and the airport staff in Sydney & Singapore. The crew on both flights were aware of my condition and regularly came to check if I was ok and if I needed anything. Even when the meals were being served, if they couldn't hear me very well or understand me, they were very patient and didn't make me feel awkward or uncomfortable about my speech issues at all. 

I did have assistance arranged between flights but decided against it at the time. I'm not ready to use a wheelchair for the first time yet! That said, at Singapore they ensured that someone walked with me from my arrival gate, via Duty Free, to my departure gate and also helped with a situation where I thought I had left my passport on the first plane (it turned out to be in my laptop bag! Oops!).

All in all I think I managed to sleep about 7 hours over the whole journey, so when I arrived in London on Saturday morning, I didn't feel too bad when I was met at the airport by Julie & Marko who I stayed with until my flight to Ireland the next day. I managed to stay awake until 6pm when I crashed to sleep for a few hours, woke up in time for the Jonathan Ross Show and was sent back to sleep by Russell Brand's random babblings and woke up at 6am Sunday!

Sunday was a very eventful day! Started the day with a fabulous fried mashed potato, scrambled eggs & chopped tomatoes breakfast compliments of Julie and then headed to the airport for my flight with AerLingus to Cork.

The plan was that my sister Anouk would fly from Liverpool to Cork, having caught the ferry from the Isle of Man the day before, and she was due to arrive into Cork an hour after me at around 4pm. As I don't drive (never passed my test! whoops!) she would pick up a hire car when she arrived and we would drive to Cork University Hospital for a few hours to see our Dad who's recovering following surgery on lung cancer & also being treated for fibrosis, before the hour and a half drive to our hometown of Kenmare in County Kerry. That was until Ryanair cancelled Anouks flight!! They offered to fly her to Cork on Wednesday (the day before we were due to fly back! Pointless!) or to Dublin on Monday (just as pointless)! 

The travel agent in me immediately sprung into action and I discovered a flight from Manchester to Cork that evening which arrived in at 10:30pm. I booked Anouk on it while taxi'ing down the runway at Heathrow and got a taxi to Cork University Hospital when I arrived at Cork. Spent a couple of hours catching up with Dad, and in some ways it was good that we got some time on our own to chat frankly about things as we both are facing pretty similar serious conditions so there was no need for beating around the bush and avoiding the issues, both being rather philosophical about things. But that is how you become when faced with serious illness, the other option is to whinge and be miserable! Life's too short for that so you just get on with life as best you can and adjust as each day goes by! 

After seeing Dad, I visited my step-sister Sarah Jane and her fiancee, who I hadn't seen in about 6 years, for a coffee and a chat before heading back to Cork Airport to finally meet Anouk. Picked up the car & drove to Kenmare, arriving around 1am and was met by our step-mum Maureen with a cuppa and some lemon meringue pie before finally hitting the sack & getting a good nights sleep!

Monday we drove back to Cork for the afternoon as Anouk didn't get to see Dad the day before so spent a few hours catching up with him.

With my condition, I'm finding that my speech is a lot worse and slurred in the morning after waking up. Once I've brushed my teeth, scraped my tongue, mouthwashed, showered, taken my medication, I tend to feel a lot better. But isn't that the same for everyone after waking up? Lol! But on a serious note, my right hand seems to have clawed considerably over the past week and I'm finding myself typing more with my left hand. It is weak but I wonder if the colder temperatures are affecting it. Maybe I should wear a glove! And i just wish I could get rid of the after effects of my chest infection, I just can't seem to be able to cough it out of my lungs! Grrrr!

Anyway, two more days in Ireland before flying back to London for another night with Julie & Marko and then driving up to Yorkshire to spend the rest of my time in the UK with my Mum! Looking forward to spending a week with her, my sisters, grandmother, aunties & cousins! #reunion

Thursday, 26 March 2015

24 hours on a plane!

So tomorrow, after getting the all clear from my respiratory team, I'm flying solo from Sydney to London via Singapore.

Looking forward to it as I will get to spend 2 weeks with my family, most of whom I haven't seen for over a year. But in truth, I'm a bit nervous travelling such long haul now that I'm further into my condition.

I'm not worried about flying or being looked after by the airline crew but just apprehensive. It's the first time I'll be travelling with wheelchair / buggy assistance from check in to the gate, between flights at my via point and on arrival in the UK. I can already feel people gawking at me wondering 'what's wrong with him?' as I used to do when I was in better health.

Then there is the person I'll be sitting next to for 7 then 13 hours on both flights. Do I tell them I have MND so that they know? Do I tell the cabin crew when I get on the plane? What if I have a massive coughing fit, seeing as I'm not totally over my chest infection yet, and become the most annoying person on the plane? What if a bit of food or liquid goes the wrong way & I start to choke / panic and need the closest person to whack my back. Or even worse, have excessive saliva trickle down my throat while I'm asleep and wake up gasping, which happens in my sleep occasionally. I'm not even sure if the airline food will be edible for me, so wondered if I should bring my own Weetabix, but will they have milk and a bowl on the plane? Will I find the pressurised cabin difficult on my lungs? Will I pick up a nasty infection with all the germs circulating in the air system? Should I wear one of those medical masks over my nose and mouth?

All these things I've never had to think about or consider before.

Guess whatever will be will be!

Sunday, 22 March 2015

Chest Infection, Saliva & Speech Frustrations

For the past week I've been battling a rather nasty chest infection. For those unaware, something like this can be potentially fatal or extremely uncomfortable at the very least for an MND/ALS patient. I dread the feeling of a cold coming on! Due to loss of muscle and/or weakened muscles in the throat, mouth and diaphragm, it is very difficult to cough up loosened phlegm when a chest infection is clearing, as mine now is thanks to antibiotics. Coughing up thick sticky phlegm is a nightmare, especially when it gets lodged in your windpipe. You just can't cough like you used to anymore. Even on Friday, my last day at work, I had one of these lodgements occur and I sat at my desk not wanting to make a fuss and also not wanting to sound gross by 'hocking' but then I realised there was no way it was going to budge, couldn't breathe and felt myself going blue in the face so jumped up and panicked a colleague into banging my back which worked and dislodged the chunky lump of phlegm. Very embarrassed about the whole scenario, I decided that they were probably rather relieved that it was my last day!! But its scenarios like that I'm scared of, moreso when nobody is around. Stupidly I currently still smoke, but any smoker will tell you, smoking helps to cough stuff up, much to the bewilderment of non-smokers!

Over the past month I have also had increased saliva production, again this happens due to muscle wasting and weakness in the mouth, and have woken up with my face stuck to a pretty much soaking wet pillow on a number of occasions. Gross you may think, but its better than waking up in the middle of the night choking on your own saliva while its trickling into your lungs as you sleep, as happened at 4am this morning! I'm even beginning to wonder if this occurring more frequently over the past few weeks could may well be what brought on my chest infection. The irritating part is that the saliva can be runny or sticky & thick or a mixture of the two at the same time. Brushing my teeth in the morning becomes a battle with stringy saliva towards the end of the brushing process. I began using a tongue cleaner too a few months ago to help with the procedure. The worst thing about excessive saliva is when you're speaking it builds up in the corner of your lips, or in the mouth in general, completely mumbling any attempt to get words out properly. Sure you can swallow it down but lo and behold, the next batch builds up within 60 seconds. The nasal passage also gets frequently blocked with thick sticky saliva which makes the voice very nasally as if you had a clothes peg on your nose. I do have a prescribed medication called Endep which is supposed to reduce saliva secretions but the extended list of side effects concerns me so I'm yet to try it. Maybe this week I'll give it a go.

Then there are the speech problems, also caused by muscle atrophy and weakness in the mouth, in my case moreso the tongue. My tongue is riddled with constant fasciculations and has lost muscle on both sides and the tip of my tongue is weak so that any words involving letters requiring the tongue to be raised to the teeth or roof of the mouth come out all slurred. I try to speak slowly or repeat myself with the hope that pronouncing every letter and word will make it more clear for people to understand what I'm trying to say, but it still comes out as a mumble. That said, I have always had a bit of a mumble and a lisp anyway, now its just multiplied! I have great chats with friends and family by email, text message, Facebook messenger or Whatsapp but when it comes to physically meeting and speaking in person, I'm not even 1/100th as clear, witty or funny as I seem by message as it just all comes out gobbledygook which is very frustrating, but is part of the nature of the beast.

Last week I even tried out a 'text to speech' app on my iPhone and iPad. Although I can definitely see the benefits of these and know I will find myself using them in the future (thankfully the voice choices are much better these days!) but I don't see how it can replace the art of conversation as by the time you have finished typing out what you want to say, the conversation will have changed twice since! I expect it will be more useful for more common things you want to say like 'can you get me a cup of tea' or 'what time is dinner'!!! People say they can understand me fine, despite me having to repeat myself quite a lot, but I know myself that I'm not speaking clearly and I expect they are just being polite. It always frustrates me when I've said something and get a response like 'oh yes' when clearly thats the wrong answer to what I had said but I just let it go. Its not as though I can try to explain what I was saying all over again as by that time my tongue is so exhausted I just give up! Luckily I do have very supportive and understanding friends so I won't be staying indoors for the rest of my life just yet, if I can help it!

Next Friday 27th March I'm flying from Sydney to London straight through Singapore in Economy Class to spend a fortnight with family in the UK and Ireland. It will also be the first time using the airport assistance wheelchair / buggy with British Airways from check in to the gate, between planes and vice versa. Its going to be embarrassing but worth it to conserve my energy! My health advisor is concerned about oxygen levels in the pressurised cabin and so I saw a respiratory team last month. They were happy with me and weren't concerned about any possible issues despite my lung capacity being a low 60%. Since my chest infection came on about 10 days ago, my health advisor has suggested I see the respiratory team again before I fly for a check up so I am seeing them on Tuesday. I have 36 hours to get my lungs clear as I don't want to be told I shouldn't fly! I have bought some pretty good travel insurance which will cover my MND/ALS as a pre-existing condition so at least if there are any problems on board I am insured!

Tomorrow is my first Monday of not having to get up for work! I wonder if I'll have a lie in or still wake up at 6am!!!!

Thursday, 19 March 2015

Medically Retired!

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, AdamJosephNinaRobRachelOliviaJonathanLisaAntoniKeriseNatalieAnnette, Leanne, RachelClareDaveAjantaGlenPopoGemma 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.