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

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!

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