I was diagnosed with PLS in 1998. I suppose I’m lucky to have the slower form of MND. A diagnosis of MND is never easy, but PLS has given me just that little more time to prepare.
In turn, this extra time has given my family the chance to come to terms with the disease. We all understand that we have to die sometime, and I think this outlook has made MND more acceptable.
Looking back I do not recall precisely when I lost my speech and the ability to walk, which I find quite strange. As my legs grew weaker and my speech began to slur, it became frustrating to try and explain what was wrong. Some people assumed I was drunk, and when my speech failed altogether, others would shout at me as though I was deaf. I found being ignored far worse than the ignorance. Though I can’t speak, I’m not invisible!
One concern I have is that death will be a long drawn out affair. If this turns out to be the case, I might end up wishing I had the more aggressive form of MND. This makes me think…
But my life is certainly not all bad. I’m thankful that my family live close by, and the MND Association has loaned me a Lightwriter to help me communicate. I also have a motorised scooter, which helps me get out and about.
Over the years I have met many people affected by MND and sometimes they ask me what supplements and medication I take. Of course I know that they’re really asking me how I’ve survived this long. This realisation has made me feel very fortunate.
When I feel down, I think of others that have more disabilities than I. It puts my life in perspective and helps me realise that life could be worse. All in all, I feel good about having a slower progressing form of MND. Life is so precious…you never know when it could suddenly be taken away.
People should make the most of every day they have. I live every day to the full, hoping that a cure is found soon.