My journey started when I was 57. I noticed my speech beginning to slur just before Christmas 2002. I was also experiencing cramps in my right leg, and was becoming greatly fatigued. The deterioration in my speech affected me considerably.
My journey, though difficult and lonely at times, has been worthwhile because I feel valued and have remained with my family.
Anxiety led me to a private consultation and several weeks later, scan and tests complete via NHS my wife and I drove to see the neurologist.
The words leading up to the phrase “have you heard of Motor Neurone Disease?” are to this day a complete blur. I had heard of this disease and was totally dumbstruck. All I wanted to do was break down and cry and get out of the room.
There was no one to offer direct support or counselling after such a shock. My wife does not drive and I have no idea how I managed to get us home. I think it was in almost total silence, but once there I broke down completely. This was the worst day of my life.
I accepted counselling offered by my employers: my main worries at the time being how my relationship with my wife and family would be affected. I need not have worried because they were all very supportive and maintained a positive attitude.
I never returned to work and eventually retired on ill health grounds, hoping to at least enjoy the time I had left. We made an early decision to turn the garage into a downstairs bedroom/wet room as we knew I could get progressively weaker quickly. We contacted an Occupational Therapist for advice on the practical planning for this and it was completed well ahead of need, including ceiling track hoist.
I played double bass in a jazz band and harmonica in a blues group and decided to carry on with these as long as possible but after six months I had to cease as my breathing was becoming affected. At this time I took advice on having a PEG fitted because of increased difficulty swallowing and again this was completed well ahead of need.
My youngest son found a chat room on the internet called BUILD where people with MND could meet up. This proved to be a major influence on my thinking and attitude towards MND. I no longer felt isolated and talked to people with a positive attitude who are determined to live life despite MND.
As time progressed, my breathing started to deteriorate to so I referred via the MND Association and my GP to a Respiratory Clinic. I started on Non Invasive Ventilation within a few weeks and felt the benefits immediately.
When I breathing started to worsen again, I enquired with the clinic about Invasive Ventilation. They painted a very black picture. But after consulting with my GP the clinic agreed to support my request.
A five-month wait followed before a meeting was held to discuss my care package. When I met the Respiratory Consultant I found myself having to defend my decision to have a trache all over again. But the decision was finally taken out of both our hands when I suffered respiratory failure. As I was awaiting a planned trache this was done almost straightaway.
During my five weeks in ICU I lost a lot of my remaining mobility, and my ability to breath without ventilation was lost forever.
I now have 24-hour nursing care at home, which has meant a great adjustment for my family. However, I have nothing but praise for their care and attention as well as their respect for our space and privacy.
A difficult step on my journey has been completing my living will, but I was helped by the consultant at my local hospice and I feel reassured to know what will happen to me in the future.
Today I am totally wheelchair-bound and only have a little use in my hands, which enables me to use the computer, especially for communicating. Although I miss my independence I still feel part of the community and am able to contribute, for example, by composing questions for a quiz night and having one of my photos used as a birthday card by a local card company.
Part of my philosophy is not to shut myself away. I get out, weather and health permitting, and have friends visit. I’m still glad to be here. My journey, though difficult and lonely at times, has been worthwhile because I feel valued and have remained with my family. I am living with MND not dying from it.
