Jeff writes about the frustration he feels for not being able to do the simplest of things. However he also outlines the importance of keeping up the fight and making the most of life.
I first started showing symptoms in September 2008 when I noticed that my foot dropped when I walked. My daily life became a series of being able to manage less and less, with the main symptoms being in the waist down. This required walking using one stick, with range down to about 300 feet and over the space of twelve months, gradually reduced to the point where I cannot walk more than about ten feet using a Zimmer frame and have to use a mobility scooter to allow mobility outside the house.
During this time, and for the last 18 months I have continued to work with much help from my workplace and my Occupational Therapist. The psychological impact of having to rely on others and being a burden to those closest to you cause many of the quiet internal emotional turmoil's many will face as the diseases transitions to new levels. Having contracted the disease at the age of 57 and having had a very active career in the Royal Navy for nearly 30 years I found myself getting annoyed and frustrated with myself for not being able to do the simplest of things.
Sensible management of the disease is important and so is emotional support and understanding to try and not let it take over your life, but making a daily mental note of how you can lessen the impact of the disease by keeping busy and fighting it to the end. The psychological impact of feeling threatened by simple movements, feeling of isolation and curtailment are all quite normal and involuntary moods of depression should be fought in your mind, to lessen the impact on those around you, often trying their hardest to help and accept the impact on their lives too.
I feel we (as sufferers) should all acknowledge the support and professionalism of the Association and its agencies, the OCT's who work wonders in getting day to day help for us and those who help us to make sense of our daily fight against this devastating disease. I aim to fight this right to the end, but am also aware that MND will ultimately win, but it is not a fight I intend resigning myself to loosing.