Gay Times

Very proud to be raising awareness on Motor Neurone Disease specifically in the gay community, which I believe may be a first, by sharing my story over a 4 page article in Gay Times. Thank you to  MND Association and Gay Times Magazine for making this all possible. Available digitally and in the shops now.

In one of the most touching stories we've ever printed, @jodydv78 tells all of his brave battle with MND. Via https://t.co/KTWRgsA0xw pic.twitter.com/rpn8C46APg

— Gay Times Magazine (@GayTimesMag) September 23, 2016

Paralysis, Mutilation & Cornwall!

The past month has been tough to say the least. I have discovered more and more things that I am unable to do as the disease increases it's pace. I wonder why my MND has to be so devastatingly destructive so quickly compared to other sufferers who have a handful of the side effects of MND. Did I do something to speed up the disease? Why can others still eat, drink or speak who have been diagnosed longer than I have? Why have I been dealt the wrath of every aspect of MND. Did I eat something, take a medication or do something that aggravated it? I guess I will never know. You might though! Lol

Over the past couple of weeks I have been suffering from restless leg syndrome in my legs, arms and back. It is absolutely hell. I can't get comfortable in bed or in my wheelchair. The worst thing is with my paralysis increasing I am finding it impossible to move myself out of restless uncomfortable positions without assistance. So anytime of day or middle of the night I have to summon help from my mum, carers, district nurses, marie curie nurses or personal assistants to reposition me numerous times each day.

I have had the emergency services out twice in the past fortnight. The first time struggling with my increasing paralysis and restlessness I launched myself to the floor in pure frustration. The second incident two nights ago I woke up on the floor unable to move. Unable to reach any of my care alarms the only way I could get help was to shuffle across the floor on my back,  which took an hour, to kick my bedroom door to get Mums attention sleeping in the next room.

I tell a lie, I was able to reach the wire of one of my switch alarms on the floor. I grabbed the wire but the wire came out of the switch alarm which was way beyond my reach.  The night before I had put on some classical music to try to relax me to sleep so as I was lying on the floor on my back after the wire came out of the switch alarm, my last life line at that time,  'Time to say Goodbye' by Sarah Brightman came on the radio like something out of a Final Destination film!

I mentioned in my last post that I was going to be starting to use a conveen sheath to make peeing an easier affair. I was apprehensive and not too keen on having a sheath on my manhood attached to a urine bag strapped to my leg 24/7. However I was pleasantly surprised when I started using them as they were very comfortable and convenient until an accidental mutilation in a health care venue where I was staying! I was being hoisted from the bed to my wheelchair with my conveen sheath attached however the full urine bag had not been secured to my leg and as you can imagine gravity took over which almost ripped my dick off!  I was left with a few stretch sores at the base of my penis which I am still waiting to heal before I can use the conveen sheaths again. On the plus side I gained a few inches! Lol

To finish off with some nice news, I visited one of my bucket list destinations in the middle of August and spent a week in Cornwall with Mum and my two elder sisters, Emma & Anouk. The journey was epic and I had a very numb bum sat in the wheelchair in the back of the van the whole way. Every bump in the road felt like whiplash!  But it was worth it as the accessible accommodation at  Gwel an Mor in Portreath was fantastic and a great  base to explore.

Highlights were Lands End, Godrevy and Marazion beach at St Michaels Mount. Wheelchair access was good at these locations however one of the biggest let downs was wheelchair access to the beach at St Ives without having to get around the narrow bumpy traffic jammed streets of the town. There was access from a path behind the railway station but it was much too steep in places for my powered wheelchair never mind a manual wheelchair! Sort it out St Ives!

Eden Project 

The weather was lovely half of the time so we visited the Eden Project on one of the greyer colder days which was fun but packed. I got tired of kids gawking at me in my wheelchair with my ventilation mask on in the end. The rest of the time was spent relaxing at the accommodation. We also stopped for a night in Portishead each way to break the journey.

It was a great trip and possibly my last, who knows, but I am hoping to get to another bucket list destination, Edinburgh, for a long weekend sometime this Autumn. And hopefully London to see some old friends and work colleagues. It will definitely have to be by train though as there is no way I am sitting in the back of the van for a long drive again!!

I wish I could have one more experience on proper transport, an Airbus A380, though !

Qantas Airbus A380 taking off from Sydney Airport.

I miss doing photography and living near an airport! 

Telling It Like It Is... #FuckMND

Things are sadly slowly sliding even further down a slippery slope! (alliteration overkill there!!!). The last few weeks have been nothing short of tough. I even uttered the sentence (on my EyeGaze of course!) 'I can't wait to die so I can be at peace' on three separate occasions due to the intense frustration and torment of being a fully functioning mind stuck inside a physical body that is failing more and more everyday.

Imagine you are no longer able to pull your pants down (or up!), never mind getting up off the toilet, due to failed hands and legs. Nowadays that is something I need help with a few times a day from the nearest person, be it a carer, my mother, my sister or even a visitor, as toilet going has become such an urgency due to the muscles cruelly destroyed by MND. Three years ago I would have preferred to drink acid before I let anybody help me with the toilet! It is soul destroying.

I currently use a funnel connected to a bag to piss into to save me the risky manoeuvres of attempting to get to the bathroom on time if I need to go urgently. Now im finding it impossible to hold the funnel so I am now facing a future of wearing a conveen which is like a condom somebody will have to put on my dick everyday with a tube at the end which is attached to a urine bag wrapped around my leg! Can't wait. Undignifying comes to mind.  This is where a boyfriend would have come in handy!!

Check out a conveen and let me know if you fancy swapping lives for a day!

A few days after writing the above I almost got my wish and had a near death experience. I am very lucky to be able to be finishing this entry today thanks to observant neighbours and amazing paramedics!

While at home alone for ten minutes I decided to adjust my nippy ventilation mask however the tube came out.  Unable to breathe without ventilation and no strength in my hands to put the tube back in, I dashed out the house in my wheelchair at warp speed to try to get to mums place four doors away as she had only left my place minutes earlier.

Holding the  ventilation tube in one hand and trying to put it on,  driving the wheelchair and pressing the buzzer in an attempt to get anybodies attention with the other hand. Slowly suffocating I lost control of the wheelchair and went off the pavement outside mums place, got stuck and dropped the ventilation tube on the ground. Seconds later I passed out.

Lucky some neighbours passed by in their car, saw me passed out slumped over the side of my wheelchair, blue in the face, stopped and came to help me. They amazingly noticed the ventilation tube was out and put it back in,  then called 999 and knocked on mums door. First responder arrived within minutes. I came around about 15 minutes later and was taken into my house & bed to recover as my SATS had dropped down to 82! After a dose morphine to help me breathe and relax I slept like a baby that night! I have since invested in a pair of walkie talkies so I can buzz mum in an emergency if she is at home!

Seconds away from death, I cant thank my neighbours enough so if you see someone who looks like they may need help,  don't pass them by thinking somebody else will help them, you never know how important those crucial seconds are to saving some body's life and if you can't help you can get help. I'm sure you would want someone to stop and help you!

What I learnt from the experience is that I'm not afraid of death. Sure there were a few frantic moments but had I died I have wouldn't have known much about it as it was very quick until I passed out for lack of air.  I had to see my consultant in Sheffield for a quarterly check up on Friday  and we discussed end of life care and what happens is that the nippy becomes ineffective so what they do is, under instruction of the patient or  next of kin,  reduce the nippy gradually and administer morphine. A long way off hopefully but useful to know.

Day out to Chatsworth House

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