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

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!

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.

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!!!!