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

My Travels

Various photo's & selfies from my travels over the years ...

Posted by Jody de Vos on Saturday, 3 October 2015

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