What is MND/ALS?
What is MND/ALS?
MND/ALS is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe, and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. In most cases, it does not affect intellect, memory or the senses. Progress is relentless and generally rapid, with a life expectancy of between 2 and 5 years from the onset of symptoms. There is no known cause and there is no known cure. See links on the right for further information.
Saturday, 7 November 2015
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