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.

Thursday, 1 September 2016

Paralysis, Mutilation & Cornwall!

The past month has been tough to say the least. I have discovered more and more things that I am unable to do as the disease increases it's pace. I wonder why my MND has to be so devastatingly destructive so quickly compared to other sufferers who have a handful of the side effects of MND. Did I do something to speed up the disease? Why can others still eat, drink or speak who have been diagnosed longer than I have? Why have I been dealt the wrath of every aspect of MND. Did I eat something, take a medication or do something that aggravated it? I guess I will never know. You might though! Lol

Over the past couple of weeks I have been suffering from restless leg syndrome in my legs, arms and back. It is absolutely hell. I can't get comfortable in bed or in my wheelchair. The worst thing is with my paralysis increasing I am finding it impossible to move myself out of restless uncomfortable positions without assistance. So anytime of day or middle of the night I have to summon help from my mum, carers, district nurses, marie curie nurses or personal assistants to reposition me numerous times each day.

I have had the emergency services out twice in the past fortnight. The first time struggling with my increasing paralysis and restlessness I launched myself to the floor in pure frustration. The second incident two nights ago I woke up on the floor unable to move. Unable to reach any of my care alarms the only way I could get help was to shuffle across the floor on my back,  which took an hour, to kick my bedroom door to get Mums attention sleeping in the next room.

I tell a lie, I was able to reach the wire of one of my switch alarms on the floor. I grabbed the wire but the wire came out of the switch alarm which was way beyond my reach.  The night before I had put on some classical music to try to relax me to sleep so as I was lying on the floor on my back after the wire came out of the switch alarm, my last life line at that time,  'Time to say Goodbye' by Sarah Brightman came on the radio like something out of a Final Destination film!

I mentioned in my last post that I was going to be starting to use a conveen sheath to make peeing an easier affair. I was apprehensive and not too keen on having a sheath on my manhood attached to a urine bag strapped to my leg 24/7. However I was pleasantly surprised when I started using them as they were very comfortable and convenient until an accidental mutilation in a health care venue where I was staying! I was being hoisted from the bed to my wheelchair with my conveen sheath attached however the full urine bag had not been secured to my leg and as you can imagine gravity took over which almost ripped my dick off!  I was left with a few stretch sores at the base of my penis which I am still waiting to heal before I can use the conveen sheaths again. On the plus side I gained a few inches! Lol

To finish off with some nice news, I visited one of my bucket list destinations in the middle of August and spent a week in Cornwall with Mum and my two elder sisters, Emma & Anouk. The journey was epic and I had a very numb bum sat in the wheelchair in the back of the van the whole way. Every bump in the road felt like whiplash!  But it was worth it as the accessible accommodation at  Gwel an Mor in Portreath was fantastic and a great  base to explore.

Highlights were Lands End, Godrevy and Marazion beach at St Michaels Mount. Wheelchair access was good at these locations however one of the biggest let downs was wheelchair access to the beach at St Ives without having to get around the narrow bumpy traffic jammed streets of the town. There was access from a path behind the railway station but it was much too steep in places for my powered wheelchair never mind a manual wheelchair! Sort it out St Ives!

Eden Project 
The weather was lovely half of the time so we visited the Eden Project on one of the greyer colder days which was fun but packed. I got tired of kids gawking at me in my wheelchair with my ventilation mask on in the end. The rest of the time was spent relaxing at the accommodation. We also stopped for a night in Portishead each way to break the journey.

It was a great trip and possibly my last, who knows, but I am hoping to get to another bucket list destination, Edinburgh, for a long weekend sometime this Autumn. And hopefully London to see some old friends and work colleagues. It will definitely have to be by train though as there is no way I am sitting in the back of the van for a long drive again!!

I wish I could have one more experience on proper transport, an Airbus A380, though !

Qantas Airbus A380 taking off from Sydney Airport.

I miss doing photography and living near an airport!