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

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