Can you please help me achieve my dream (MND)

Hi, my name is Rob Barrie I have Motor Neurone Disease, and I am trying to raise money to help me to live my life some more and do something that I’ve never done before, and travel to another Country for a bucket list holiday. I’m planning to go to Pittsburgh in the United States and see my favourite Ice Hockey team play. The Pittsburgh Penguins.

Since the Covid-19 pandemic started and soon enough lockdown was enforced, I started to isolate therefore I could not plan anything like a bucket list holiday, I couldn’t even leave the house! Now restrictions are easing, I want to live my life before the inevitable happens.

 

The money raised by your kind donations will be used to help pay for:

- The return ticket flights from Manchester – Pittsburgh, Travel insurance (Which is overpriced and hard to get just because the fact that I have a terminal illness), Hotel Room, Hoist rental so I can get in and out of my wheelchair into and out of the bed and on and off the toilet and shower chair. Wheelchair rental for the week, wheelchair accommodating transport, tickets for the Pittsburgh Penguins games, food and drink and anything else which I may need for my stay, I also must take two carers to help me along the week.

My bucket list holiday will be in November.

 

Here are some hard hitting facts about MND:

 

- MND has no cure and is always fatal. It is a terminal condition.

- MND can affect adults of all ages but it’s more likely to affect people over 50 years of age.

(I was just 24 years old when diagnosed)

- MND kills a third of people diagnosed within 1 year and more than half within 2 years.

(I’m in my 5th year of this cruel battle)

- At least 6 people in the UK are diagnosed with MND every day and at least 6 people die every day from it too.

- ALS or Amyotrophic Lateral Sclerosis, is the most common form of MND and carries an average life span of 2 – 5 years and PLS (Primary Lateral Sclerosis) is a rare form of MND but progresses a lot more slowly than ALS.

(I was diagnosed with ALS)

 

 

Now that you know some facts about this cruel disease, here is my story of me and the unwanted burden of Motor Neurone Disease.

Around August time in 2016. I was a normal-ish 24-year-old. (I was also diagnosed young at 14 years old with paranoid Schizophrenia). I was not long starting a beginner’s course at a local Archery club when I started noticing strange things with my right arm. I was experiencing some localized weakness and muscle spasms.

Around the same time my walking become more difficult, and I was struggling to lift my feet up properly.

 

After some time of putting up with this I decided that it was time to see a doctor. Whom sent me for some tests not knowing exactly what was wrong.

 

Tests included EMG’s, Nerve conduction studies, Blood tests and MRI scans.

 

Several months went by and in June 2017 I was given the devastating diagnosis of MND and was told that I had 2 – 5 years of life expectancy. Obviously, this crushed me and my family, and my way of life would never be the same again.

 

Almost five years on I am now wheelchair bound, reliant on a ventilator to help me breathe at night and my speech has deteriorated to the point I have a communication aid which uses my voice which I banked a few years ago, to communicate with others properly.

 

Thank you for taking your time to read through my Go Fund Me page and about my hard battle with such a cruel disease. Your donations are welcome and are always very appreciated.

 

Kindest regards, Rob Barrie.