I have been diagnosed with MND (ALS) and need your help

About me

Hello, my name is Paul Ryan I am 59 years old.

I have always been active and positive and have never asked for help before in my life .

I was diagnosed with Motor Neurone Disease ALS in September 2024. I don't think I can’t ever put into words, the feelings, the shock and fear upon hearing the diagnosis . Since then the enormity of what this means for my partner and I and the challenges we will now need to face as this cruel disease takes hold is starting to become a reality. A reality we cannot hide

or escape from but one we must meet head on by being brave together and by allowing our family, friends and wider community to help in whatever way they can.

I was working and fully active until the beginning of September , but now have had to give up work due to illness deteriorating very rapidly. I therefore have no income and am reliant on our savings which are dwindling.

Since the diagnosis I have maintained a positive outlook, with the support of my Family and Friends and they are doing what they can .

What is Motor Neurone Disease (MND) -ALS

MND it is a disease that involves your immune system killing off the Motor neuron's in the brain and the spine that carry the messages to all the muscles in your body. Motor Neurones control muscle activities like Walking, lifting, grasping , Speaking, Swallowing, Speaking and

Breathing.

At the moment, there is no cure for MND. This a life shortening illness that leads to

premature death up to 2-3 life expectancy

Since diagnosis

I was working prior to September but now I have had to give work up and now no income .

My Partner and I have used our savings to buy an electric wheelchair, Ramps (getting into and out of the house), walking frames hoists and other aides for personal care.

We have also converted some of the downstairs into a bedroom and an accessible bathroom as I cannot manage the stairs anymore.

Since September my health has gone downhill rapidly, I can no longer walk, do up buttons, zips, laces on clothing or footwear, put on my socks, shoes, shirts and jumpers, I cant wash myself in the shower as I fall. I can’t feed myself without help. I can hardly speak. So I have

had to buy appliances to help me.

Since the diagnosis I have maintained a positive outlook. I am now learning to accept help from Family, friends and strangers , which I am eternally thankful to them all

Why I need help

U have received excellent medical

diagnosis and follow up visits and testing.

With MND there is realistically nothing that can be is nothing that can be done . I just need to manage my conditions as best I can. So in the near future I will require 24 hour care, which I will have to pay for myself which does not come cheap.

I now require a car that has a ramp so that I can me and my wheelchair can go straight into the back. This will enable me to get to hospital and doctor visits, to see friends and be able to get out and make the most of going out to see places in what little time I have left.

Special adapted cars are very expensive

I also need eye gaze technology which is software and equipment will help me to

communicate with people using my eyes, as my hand will soon not be able to move. this

The eye gaze technology and equipment is very expensive

Fundraising appeal

However things I require are too expensive for me to fund on my own.

The Funds are required are amounting to over £40,000

I will sell my current car to go a little way to reaching my funding target of £40,000

I have decided to set up this GoFundMe page for kind people to donate to help me with funding a vehicle for me and the eye gaze technology

What this means for me

MND is a terminal disease with no chance of recovery. Due to the aggressive complexity of this condition, I will never run along the beach again, watch the beautiful sun set from the peak of a mountain or swim in the ocean or ride a bicycle in the countryside or my love of driving is no more as I am not allowed to drive anymore.

I am now fully wheelchair bound and now need hoists to get me out of bed to the bathroom, which for me feels more of my independence taking away from me

How you can help support me

So, I am appealing for your financial support towards the purchase of an adapted vehicle . l will hugely appreciate and value any donation that you can give, whatever the amount.

Alternatively, you might decide to set up a sponsored event to help raise funds for my cause.

Everything will help.

My partner or I will update this page on an ongoing basis with links to any events that are created as fund raisers,

Thank you for any help you can manage

Paul