Firstly, I’d like to say a personal thank you to you, from me, for you for taking the time visit my Justgiving page, for wanting to learn more about Motor Neurone Disease (MND), and / or for your interest in MND or in reading my story.

I lost my Dad to this horrific illness on New Year’s Eve in 2012. Just as the fireworks were going off to the celebrate the dawn of the new year, to symbolise new hopes and new beginnings, my dad’s, and his family’s hope was just ebbing away.

What had started off as simply a strained voice for dad less than 11 months earlier, had ended up with him receiving palliative care at home, and to us saying goodbye to him as the celebrations were going on all around.

He had the most aggressive form of the disease and sadly lost his battle after being formally diagnosed with MND/ALS just three weeks earlier. It was truly devastating. Not knowing what was making dad ill was terribly difficult for all of us, it turned out that knowing what was making him ill was to be even worse.

The time in-between consisted of so many unknowns, and of dad suffering terribly, both physically and mentally, from this horrific and brutal illness.

He lost the ability to be able to do the things that most of us take for granted. Over a matter of just a few months, he became unable to walk, unable to speak, unable to eat or drink and in the end, unable to breathe.

By the time dad was diagnosed, it was too late for him to have a P.E.G. or gastric nasal tube fitted to help in making him more comfortable and to help ease his suffering as he was by this point unable to swallow and was at an elevated risk of aspirating. He was retaining carbon dioxide and it was deemed too dangerous to even sedate him to give him care. He was by then suffering immensely, not able to take foods orally and he was in a great deal of pain. It was incredibly distressing for dad, myself and the rest of his family. An earlier diagnosis would have enabled dad to have a P.E.G./nasal feed fitted in order to be enable him to receive nutrients, medicines and pain relief.  He couldn’t even communicate to any of us his pain and frustrations, his memories, his highs and his lows, his wants or his needs.

Even the medical profession couldn’t diagnose dad as so little was/is known about MND. When he did receive his diagnosis, he was told that he had MND which is currently incurable and ultimately fatal.

In less than 11 months, dad went from being relatively fit and healthy, to needing 24-hour care, unable to almost literally move a muscle or speak, able to communicate only via a limited movement in his right hand and a white board, being diagnosed with an incurable and terminal disease, and sadly, in the end, passing away.

Motor Neurone Disease is brutal, horrific and devastating. Words really can’t describe it. It was and is currently incurable, and it was and is currently still terminal. The lifetime risk that a person will contract MND in their lifetime is upto 1 in every 300 people. A third of these will pass away within a year of diagnosis, and more than a half will pass within 2 years of diagnosis.

Take a moment to think about what you have just read, and about those numbers for a moment if you will, and then think about the number of people that you know, that you work with, that you have as friends on Facebook, Instagram, Snapchat or Twitter, 1 in every 300 people!

As well as losing my own dad to MND, several of my good friends have lost a parent to MND, another one has lost their uncle to MND so this is for them also.

That is why it's imperative that we raise more awareness of this condition, in the hope that other people and their families won't have to go through what we went through during that terrible time.

As such, I’ve organised this event, with some outstanding help and support from the MNDA and the MNDA South Lancs Branch Team. The event, which is now in its 3rd year, and has been arranged specifically for the purpose of raising awareness of MND/ALS, as well as maybe raising some much needed monies also for the MNDA in order that more research can be done into the causes of MND/ALS and into what can be done for people who are currently living with MND/ALS.

The films are free (donation optional) and there's free parking, a free beer / glass of wine and even free popcorn and cinema snacks.

The MND Awareness film evening is open to anyone so please feel free to circulate as appropriate.

There will also be a pop-up stall at the Centre between 12-2pm on Tuesday 18^th June 2019 to find out more information about MND/ALS, and/or to book a ticket. Please use the online booking link here to book your free ticket(s). The stall will have some volunteers from the MND Association, and an employee from on Birchwood Park available to
answer any questions that you may have, or if you wish to speak with them about their own personal experiences of MND/ALS.

So what is MND/ALS?

Motor neurone disease (MND), or Amyotrophic lateral sclerosis (ALS), is a fatal rapidly progressing disease that affects the brain and spinal cord, attacking the nerves that control movement so muscles no longer work. It kills a third of people within a year and more than half within
two years of diagnosis. It’s an absolutely devastating disease that
affects up to 5,000 adults in the UK at any one time and kills six people every day. Currently, there is no cure.

https://mndeyes.mndassociation.org/

BOOK YOUR FREE TICKETS ONLINE AT http://parklife.birchwoodpark.co.uk/movie-night/

*Any money that you can donate will be greatly appreciated and will go towards research for finding a cure for this horrible disease, towards buying equipment to stop others from future and further suffering for those who are currently living with MND, and towards helping support current families going through their own experiences of MND. You can see below just how your money helps those with MND.

If you can’t attend the event or donate, simply telling others about this event or my story will help raise awareness of this horrific illness. 

Anything small or large you can donate will go a long way for 1000s of people. (See below for how your donation can make a difference)

Donating through Just Giving is simple, fast and totally secure. Your details are safe with Just Giving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. 

Thank-you once again, from the bottom of my heart for your time to read my story, and hopefully for your support!

Paul

*The difference you could make

Every donation makes a difference to a person living with MND.
Here are just a few examples of how your fundraising could help:

£10 provides an information pack for a newly
diagnosed person with MND

£25 runs the MND Connect support and information
line for half an hour

£35 buys an adapted cutlery set to help someone with
MND continue to feed themselves

£50 funds laboratory equipment for a day of vital
research into finding out the causes of MND

£75 funds an MND expert researcher for half a day

£125 will fund a specialist communication app for a tablet/ iPhone/laptop

£200 provides a basic level of respite care for a day

£250 buys attendant controls to enable a powered wheelchair user to
transfer control to a carer when required

£550 funds an iPad with communication software

£1,000 buys a specialist joystick to enable someone to continue
working

£1,200 funds the installation of a stair lift and
initial six months rental

£2,000 buys two riser recliner armchairs to help
maintain a level of mobility for those who can no longer stand unaided

£3,200 buys a Lightwriter to give someone back the
ability to communicate with their loved ones

MNDA ensure that every pound they receive is spent carefully so that people affected by MND get the help they need, both now and in the future.

In loving memory of John Bullock, Dad, who passed on peacefully in his
sleep, at home, and with his loving family around him on 31^st of
December 2012.

How to get there;

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Birchwood Park is located in Birchwood, near Warrington in the North West of England, close to the M6 and M62 motorway interchange, providing excellent links to the surrounding region and beyond. Birchwood Park proactively supports its award-winning Travel Management Plan with a range of initiatives including an exclusive free shuttle bus link to Birchwood Station, online car-sharing scheme, the best cycle facilities in the region and exclusive discounted bus tickets. For a more detailed outline of Birchwood Park’s Travel Management Plan, visit www.birchwoodpark.co.uk/parklife/travel

A map and directions to The Centre car park for meeting and conference delegates can be downloaded here.

For more information or a downloadable map, please see the links below;

http://www.birchwoodpark.co.uk/ 

By Car : Sat Nav Postcode: WA3 6AE

Parking :Short Stay – Pay on Foot Car Park is available at Chadwick House (opposite The Centre)

Long Stay – Pay and Display Car Park is available in The Quadrant (behind Newton House)

Parking tickets will be validated at reception in the centre on the day/ evening so please bring your ticket with you.

There are also electric car charging points where you can charge your vehicle for as little as 20p er kWh of usage. Please note there is a time limit of 3 hours charging.

By Bus

Warrington’s local buses provide a regular service between Birchwood Park and the surrounding areas. Buses departing from Warrington’s Bus Interchange and railway stations take approximately 20 minutes to reach Birchwood Park. An exclusive discount of over 50% off a weekly bus saver ticket has been secured for Birchwood Park customers for use on all Warrington Borough Transport buses.

Birchwood Park also provides a FREE shuttle bus service available to companies and employees located on the park.

For more detailed bus information and timetables, visit Parklife.

Birchwood Park, Warrington also has quick and easy access to many major UK cities via Warrington’s National Express bus service.

By Train

Warrington’s Central and Bank Quay Stations connect Birchwood to the rest of the UK with regular train services from Virgin Trains and Central Trains running to destinations such as Glasgow, Birmingham, North Wales and London (arriving at London Euston). Taxis are available outside both Warrington Bank Quay and Central stations.

Birchwood’s dedicated railway station serves the main line for regular train services from Manchester and Liverpool. Birchwood Park also operates an exclusive FREE Shuttle Bus to Birchwood Train Station for our customer’s convenience.

For more information or a downloadable map, please see the links below;

http://www.birchwoodpark.co.uk/ 

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