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, 4 August 2016

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