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.

Tuesday, 31 March 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