Help ex Paramedic Ian, stricken with MND-ALS

Hi, my name is Ian Jones and in September last year at the age of 58 I retired early due to PTSD. For 32 years I served as a Paramedic in the Welsh Ambulance Service, responding across the South East region of Wales. I was looking forward to starting a new stage of my life, where I was planning to undertake voluntary work within my local community, but my future has been dramatically altered by a horrific diagnosis.

A few weeks after I retired I started noticing reduced movement in my left foot and ankle. Over 7 months I was seen by doctors and underwent scans and tests. During this period I have lost the ability to control my left leg. My right leg and left arm are now undergoing the same changes, and my voice is getting weaker. I can only get around very slowly using a walking frame. In mid May I was diagnosed with Motor Neuron Disease (MND) / Amyotrophic Lateral Sclerosis (ALS).

This is a progressive condition that will over time stop all my voluntary muscles from functioning. This will affect all my limbs and my ability to speak and swallow, causing me to be trapped within my own body. Eventually my breathing muscles will stop functioning. It is advancing very rapidly and I soon expect to be in a wheelchair and I do not expect to live more than 2 years.

As well as affecting me physically, this diagnosis has had a huge emotional impact. I have gone from being the person people relied on to now having to be fully reliant on others. Emotionally I feel like I am on a permanent roller-coaster, cycling from despair to acceptance on a daily basis.

After spending my working life helping others, I am hoping you can help me and my wife.

I am appealing for funds to help towards the purchase of equipment to make my last few years more bearable for myself and for my family. I have already purchased a stairlift and a powered disabled armchair, but I am going to need much more. I am hoping to raise enough funds to purchase a specialised powered wheelchair and a lightweight wheel chair, along with bathroom and bedroom adaptations, and all the other equipment that I may need.

Knowing the level of support that I will require and not having the support network that more famous people with this condition have, I have decided to reach out for help. I hope by making this appeal I can create my own virtual network of support from friends, ex colleagues and kind hearted strangers.

One of my biggest motivation to raise funds is my wife. She has been my rock since this started, not knowing when to stop in her efforts in supporting me, both physically and emotionally. Although she is willing, she would not be able to physically manage me when I lose my mobility and upper body strength. The equipment and adaptations I need would make it much easier for my wife to look after me in my final years, whilst protecting her own physical health.

Thank you for taking the time to read about my situation and for considering whether to donate or not.