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.

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!

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!

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!!!!