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.

Thursday, 3 December 2015

Accessible seating issues at Manchester Arena

As anybody reading this will already know, I have Motor Neurone Disease / ALS which is a terminal neurological condition, diagnosed July 2014. In March 2015 I bought a ticket for Madonna's Rebel Heart Tour in Manchester on 14th December 2015. At the time of buying the ticket I was relatively ok and able to talk & walk. Aware that this could change at any time I emailed Manchester Arena in August to enquire about what would happen if I needed accessible seating by the time of the show December and they advised "If you find that you are in need of wheelchair assistance then you must speak to customer service on the night of the show, who are situated just inside the arena next to block 101. Speak to staff members there and they would try there up most best to move you to a wheel chair accessible seat".

Its now less than 2 weeks until the show and I am now unable to speak, unable to walk, am fed by a peg tube into my stomach and have to use a wheelchair pushed by a carer when I am out and about. The disease has accelerated considerably over the past few months. I emailed Manchester Arena again in mid November to advise I would now need a wheelchair accessible seat which was disappointing as I had bought a ticket for a great seat close to the stage, Block A, Row L, Seat 12. Two weeks passed and I hadn't heard back so I chased them up and received the following reply on the same day "Unfortunately all the accessibility seating is sold out for the Madonna Concert. You can still use your floor seating ticket, if you can transfer to the seat and the steward will take your wheelchair and storage round at the customer service desk". 

This isn't really ideal as I am not physically capable of sitting in my original seat, despite wanting to. Not only can I not walk, if I do I am prone to falls due to muscle loss in my legs. I need a carer with me to push my wheelchair and look after my equipment as I carry a portable NIV ventilator on the back of my wheelchair too for when I get breathless. I'm also a bit miffed as I had been told by the venue to wait until the night originally.

I have contacted Ticketmaster who said as I bought the Rebel Heart Package (whatever that includes) I would need to contact Live Nation VIP. They did say to come back to them if Live Nation couldn't help. Emailed Live Nation who confirmed accessible seating has been exhausted and there is nothing they can do. Emailed Ticketmaster back and now waiting for response.

I am very keen to go to this show as it may well be the last time I see Madonna in concert, having been to all of tours since 1993.

Anybody got any other suggestions? I have tweeted Guy Oseary and Madonna to see if I could get their attention about my plight! The other option is to sit in my original seat and risk my health, but not sure its worth ever doing that for anybody, even it is our Queen Madonna!

UPDATE: Oh just heard back from Ticketmaster. "Thanks for your patience whilst I've been looking in to this. I've escalated this with our senior account management team who have also been in touch with the guys over at Live Nation to see what we're able to arrange for you under the circumstances however they've also confirmed that unfortunately we're unable to guarantee seats in the accessible area in advance because of just how popular the show has been and that we've no tickets available to exchange you to. The team have advised that if you speak to the box office on the night of the show they'll do their very best to accommodate you in a different area of the arena or in the accessible area, however this would be subject to availability. I'm very sorry that we're not able to guarantee something specific in advance of the show, however if you speak to them on the night of the show they should be able to assist. If there's anything else we can help with in the meantime, please do not hesitate to contact us." 

Great! Looks like I'm not going then, can't risk going with a maybe. £320 down the drain!

Saturday, 7 November 2015

Decision Time

So back in March when I was living in Sydney, still walking, still working, having the time of my life despite feeling my MND slowly creeping up on me & knowing I was only months away from moving back to the UK, I bought tickets to go and see Madonna in concert in Berlin on 11th November and Manchester on 14th December. The logic behind buying tickets for Berlin was that if I wasn't well enough for Manchester then at least I will have been to the Berlin show, despite Manchester being a premium 'by the stage' seat and Berlin somewhere up in the rafters!

Anyone who knows me knows what a massive Madonna fan I am, since the early 80's, what gay man isn't?! I've been to all of her tours since 1993 so missing this tour is / was not an option, MND or not! The way I see it is that it could be the last time I see her live. I could wait for the tour DVD but who knows if I'll be around by then! Not being pessimistic, just realistic!

The past couple of weeks have been tough. We have have the district nurses out to me in the middle of the night on a few occasions. My saliva issues have returned after a two month break, I had a massive fall tripping over a floor matt in the kitchen, head butting the fridge and ending up in an ambulance being whizzed off to A&E, who were absolutely useless I have to add! Then a few days later I got a throat infection which was pretty irritating but once that had cleared up I was left with, and still have, mucus stuck in my airway that I just can't budge!  I've attempted nebulisers, cough assists, inhalers, steam and Vicks ... nothing seems to work. The problem I have is that I'm supposed to sleep with my NIV on at night but that just blows the mucus around and I wake up coughing and choking. I think it's going to be case of a lucky random strong cough to shift it eventually!

I am much weaker on my legs now, I can't stand or walk for long without getting out of breath and needing to sit down and get on my NIV! My leg muscles are very stiff and tight, but I also put that down to spending most of my time in a recliner armchair or bed and getting no exercise, as well as MND progression. My neck has weakened too and I find it hard to look down or bend down to pick something up without my head flopping chin to neck under the weight of my jam packed brain! I have an MND collar but it's not that comfortable and I can't put it on myself. 

So with all these things going on, I was on the verge of cancelling my trip to Berlin to see Madonna. I then thought that I can't let MND beat me at everything so we are off to Berlin tomorrow (Monday). The hotel I have booked is right next to the arena. I have also been in touch with the arena and they are going to try to get me in the disability section which means I can sit in my own wheelchair and hook up my portable NIV on the back of I need it! 

There is a concern about cabin pressure on the plane as my most recent lung capacity test was 39% but the flight is only an hour and a half and I will have my NIV with me to help with breathing. 

Couldn't do any of this without my fabulous carer Mum who is coming with me. She has done all the equipment and medication packing today, contacted doctors nurses and airlines to sort fitness to fly forms, made sure we have everything we need for the trip. I think she's a bit excited too having not been to Berlin before or seen Madonna live. As long as she doesn't get too tired pushing my wheelchair around and both of us stay relatively healthy, I think we are going to have a fab time!

JODY 1 - 0 MND

Friday, 16 October 2015

My Travels

Various photo's & selfies from my travels over the years ...

Posted by Jody de Vos on Saturday, 3 October 2015

Sunday, 13 September 2015


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.

Tuesday, 1 September 2015

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!

Sunday, 16 August 2015

City2Surf Sydney 2015

Thanks to Carl Austin, my bestie down under in Sydney, for raising A$4,500+ for MND New South Wales on Sunday 9th August.

He completed the race in 58 minutes & 33 seconds which was also a personal best for Carl at City2Surf!

Thanks to all who donated!

Saturday, 13 June 2015

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 :

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.