The Realities of MND - Two Years

Two years ago today, on the 2nd July 2014, my life was changed forever. I knew what my neurologist at Royal North Shore Hospital, Sydney was going to say to me following nine months of Nerve Conduction Tests, Transcranial Magnetic Stimulation (TMS), Electromyography (EMG), Magnetic Resonance Imaging (MRI) scans,  multiple blood tests and 3 weeks on Intravenous Immunoglobulin (iViG) therapy. Months prior I had informed my neurologist of my Google self diagnosis so it wasn't so much of a shock for me when she confirmed Motor Neurone Disease was the cause for the twitching and spasms in my arm and leg muscles and also the cause of the muscle loss between my right thumb and index finger. Apparently my MND was slowly progressing so my prognosis was 15-20 years which was comforting news however my research had not brought up any information on slowly progressive MND. My doubts were confirmed a month later when I sought a second opinion from Professor Matthew Kiernan's team at the Brain & Mind Institute (University of Sydney).

The month following my diagnosis was one of the most challenging times of my life. Not only did I have to deal with a terminal diagnosis but I also started a new job, my relationship broke down after 4 years (albeit amicably & unrelated to my diagnosis) and I had to move house! Just one of these events would be enough for most people to handle. However nothing could have prepared me for the further challenges that lay ahead.

As some background info, I first visited Australia in December 2007 and instantly fell in love with the country. Everything was so accessible. Half an hour of city centres you could be at one of many beaches or remote national parks. The weather was definitely a plus too! Within nine months I had moved to Sydney at the age of 30, the final age to enter Australia on a Working Holiday Visa. In retrospect I should have made the most of that opportunity to gain employer sponsorship or find a partner but unfortunately due to family reasons I returned to the UK in the middle of 2009 but my love affair with Australia continued.

NYE December 2007

Over the next four years I continued working in the travel industry in London and managed to get Down Under five times on various work and personal trips. In 2013 my partner had a work opportunity come up in Sydney and so off we both went to live the dream in Australia on a four year work visa sponsored by his employer, which we both knew we would want to convert to permanent residency followed eventually by citizenship. Sadly for me, thanks to MND,  that dream was not to be. I first noticed muscular twitches in June 2013 and saw my doctor the week before we moved to Sydney.  She was concerned and wanted me to have some blood tests done however in the excitement of moving to the other side of the world I didn't bother.

So it is now two years later following my diagnosis and I am a completely different person from the guy who received devastating news but took it on the chin, thought positive and went straight back to work after the appointment. I wasn't in denial,  I never have been in denial of my illness or my mortality  but I have always been a true believer of the power of positive thinking and living in hope. I think over the past three to six months as my condition has deteriorated I have begun to however disbelieve both of those ideologies as simple wishful thinking.

By late 2014,  I was  living in flat share near Coogee Beach in Sydney. My doctor had prescribed Riluzole, the only drug available for MND. Apparently it can give you up to three months extra at the end! Wow! Ultimately I later decided I probably wouldn't want 3 months extra at the end!! I was also prescribe Baclofen to relax my twitching and spasming muscles, but new symptoms started to rear their ugly face.  MND New South Wales and the Brain & Mind Institute were an invaluable source of support and information.  The latter providing me with regular check ups, referrals, dietary advice & orthoses as and when required during my time in Sydney.  In return I volunteered to be a guinea pig to assist in their research into neurological conditions.

I made a conscious decision to stay in Australia for as long as I could as I knew that I would reluctantly have to return to the UK at some point,  leaving my dream behind. However this just turned out to be one of a multitude of losses.  Between diagnosis in July 2014 and June 2015,  when I eventually returned to the UK,  I had dropped from 74kg to 48kg.  I was unable to eat solid food and lived on soups, mashed potato and porridge!  I used to love Thai and Indian food so this was a major downgrade due to losing the ability to swallow.

Kata Tjuta 2015

My voice had also begun to weaken which became increasingly frustrating when people struggled to understand my mumblings. My life long lisp was bad enough!! It was also embarrassing. I wondered if my speech issues were caused by Baclofen affecting my tongue muscle, so I stopped taking it.  My right hand had begun to claw and I was no longer able to write, being right handed. My left hand had also begun to lose muscle between the thumb and index finger. My right leg had developed foot drop and I had begun to walk with a limp. After finishing work and medically retiring at the end of March 2015, I spent the following three months travelling around Australia seeing places left on my bucket list (Fraser Island, Noosa,  Ayers Rock, Darwin & Kakadu National Park) generously funded by ex-partner, now best friend. I knew it would be my last time in Australia, the country I had become so fond of, so I wanted to make the most of my remaining time there.

Once I had returned to the UK, I moved in with my Mum in a little Yorkshire village, worlds away from Sydney CBD and Sydneys beautiful beaches!  My Mum however was ready for battle to get the multidisciplinary care team together. By the end of August I had had a PEG feeding tube 'installed', I spent ten days in Kirkwood Hospice to get into the routine of using the PEG and also a newly introduced Non Invasive Ventilation (NIV) / Nippy machine. Once home I had a hospital bed delivered and care package commenced. This involved a carer coming in to shower and dress me everyday, which was increasingly becoming difficult for me to do, yet another loss. District nurses would also visit daily to administer my medication. In September I had a Quickie Salsa M2 powered wheelchair delivered however living in a town house I could only use it outdoors, we were on a list for accessible housing though which we eventually moved into a week before Christmas!

One positive was meeting my childhood heroes 'Five Star' at an 80's festival in July and having 'Rain or Shine' dedicated to me! Not one to be defeated, I also managed to see Madonna on her Rebel Heart tour once in Manchester and twice in Berlin! Accessible seating in Berlin was easy to arrange including a backstage tour with one of her (gorgeous) dancers, not so easy in Manchester which only materialised following an appeal for help on Twitter! Easyjets wheelchair assistance was fantastic too

By the end of 2015,  I was finally wheelchair bound as both legs had weakened and we took delivery of a wheelchair accessible vehicle. I had also admitted defeat and stopped trying to speak as any sound that came out of my mouth was unintelligible to everybody but me so I decided to get to know my EyeGaze machine thoroughly as it would now communicate for me for the rest of my life.

The worst thing about MND is that it is like running after a bus, you can never keep up. What I have to deal with on a daily basis is communication issues, the EyeGaze isnt perfect and needs recalibrating everytime lighting changes.  It also isn't the fastest machine in the world so takes patient listeners otherwise I can be two or three conversations behind.  That said,  I am grateful to be able to communicate when many others before me didn't have the opportunity.

Breathing has become a major issue. I now wear my ventilation mask 24 hours a day. I struggle for breath within 30 seconds of the mask being off. I sometimes wonder had I staggered the use of the mask rather than rely on it so heavily so soon, maybe my breathing would have been a lot better today because essentially my NIV is now a life support machine as due to muscle loss my diaphragm can no longer lift my lungs.

Mobility is the next issue. Both of my hands are now clawed and arms 99% useless from the elbow down. Imagine having an itch you can't scratch, daily torture for me!  I cant type anymore so use my MacBook remotely via TeamViewer on my EyeGaze. Both of my feet are no longer able to provide balance to my body anymore, and to add to that my neck has weakened to the point where I can no longer hold my head up unless in a reclined position. When I lay in bed I can virtually no longer move without assistance and I am reluctantly having a ceiling tracking hoist installed in the coming weeks. After three falling incidents, one where i was out cold on the floor until my personal assistant turned up and found me, the hoist can't come soon enough, as much as I don't want it !!

The other issue is getting to the loo, I now need help to and from the bathroom and with pulling down / up my trousers which is completely humiliating. Lucky I have an electric toilet seat funded by the MND Association which does all the cleaning!!!! Even more indignifying is when I'm alone and the laxatives i take to promote movement in failed bowel muscles kick in. Shit happens! And for my poor carers that has happened four times in the past six weeks!

And then there is the taboo subject nobody likes to talk about! Skip this paragraph if you are sensitive to relationships and sex!  Do I automatically become a virgin again after sixteen months of absolutely zero intimacy with another person?  I frequently have a browse on Grindr or Tinder but never message or reply to anybody because what do I have to offer?  I can't exactly go out and meet people in bars or clubs and it's not as though I have privacy or the physical ability to go on dates! Its hard knowing that I will never get the opportunity to fall in love again or have companionship, a partner to cuddle up with in front of the TV or fall asleep with my arm around in bed. I had read a beautiful article about disability and intimacy on Twitter a few months ago,  but the direction of the story isn't for me. Check it out here: http://goo.gl/sH0SDA

It does make me laugh when people call me inspirational or brave etc! I'm none of those things, I'm just a normal guy who wants to share his stories and experiences of MND and trying to stay around as long as I can however I'm not so naive to think I will make my 40th birthday target in January 2018! But that said I am grateful of the time I have with family and friends which is a whole lot more than everyday innocent victims of terrorism get, Orlando & Jo Cox come to mind. So for now I will keep on fighting, adapting and sharing my experiences until MND, well, you know!

Its not all doom and gloom though, thanks to my PEG feed I'm up to 62kg, I have a fantastic care team and a legendary mother to fight my every corner, some amazing friends and wonderful family who visit as often as they can. Still going to concerts,  Mum & I saw Coldplay in Manchester last month, we also have a family only holiday in the UK to look forward to in August, then my ex-partner / best mate that I 'speak' with almost daily on FaceTime is visiting from Sydney in October. Hoping to also visit Edinburgh having never been to Scotland.  Good times!

My biggest frustration and regret is not having Motor Neurone Disease but having to leave Australia, somewhere I have always felt comfortable, relaxed and 'at home'. It is for that reason, when the time comes, I would like my ashes scattered from the boardwalk below Waverley Cemetery on the beautiful Coogee to Bondi coastal walk in Sydney during sunrise to finally achieve my dream of settling in Australia.

Prince

It has been a week now since the unexpected news of Prince's untimely death and I still can't get my head around it. I'm no super fan but, as a child of the 80's, its impossible not to have at least one favourite Prince song, mine being Alphabet Street amongst many others. 

'Sometimes It Snows In April'. One of Princes critically acclaimed masterpieces from the classic 1986 album 'Parade'.

But what is shocking about Prince's death is that unlike Michael Jackson and Whitney Houston, who were in my opinion ticking time bombs of wasted talent, vulnerable and unstable in later years, controlled by the people around them, Prince seemed to be in control of his life , career and legacy. A true artist, mysterious musician and icon who made his own decisions himself rather than be a pop puppet. I guess it is just yet another reminder of our mortality no matter who we are.

Thank U Prince 4 being part of the soundtrack of my life.

If 2016 is my year to move onto pastures new too, judging by the below, it seems like I will be in bloody good company and definitely entertained!



RIP Michael Jackson, the King of Pop
RIP Whitney Houston, the Princess of Pop
RIP Prince, the Prince of Pop
Long Live Madonna, the Queen of Pop

12 Months Ago ...

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!

#MNDWarrior 

#MNDArmy

#FuckMND

Losses & Gains

Losses. 

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.

#MNDWarrior 

#MNDArmy

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!

Happy New Year 2016

London Welcomes 2016

Watch: London welcomes 2016 with an 11-minute fireworks display and a rendition of Auld Lang Syne #HappyNewYear

Posted by Sky News on Thursday, 31 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!

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

My Travels

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

Posted by Jody de Vos on Saturday, 3 October 2015

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!

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!

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 :

Progression

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

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!

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!!!!

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, 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.