Since finding out that I have motor neurone disease, I can say that I have had more good days than bad without a shadow of a doubt. It is also the case that the occasional bad day which I have experienced has made me recognize even the slightest good in any other day. I say this as a warning. Today and yesterday were bad days.
I feel things are changing but I am confused as to the cause. Nobody else can tell me either. It may be a change in my medication, it may be fatigue, or it may be the condition. I do know that in the morning my speech is beginning to be slurred, this morning almost incomprehensible. I spent most of yesterday in bed and most of today feeling like I wanted to be in bed. My vision became blurred yesterday and continues to be so today. In order to operate and do the things I would like to do, e.g. writing in the blog, seeing friends and family, and pursuing our campaign with vigour, I have to turn my ventilator higher and higher everyday.
I have so much that I still want to achieve, and the thought that the above signs mean the end is nearing fills me with dread. Our story has yet to reach millions and I would like to do it using my own voice not someone else’s.
I still want to complete the preparations Louise was helping me make for Oscar. I need to complete this with my voice and not a series of yes no blinks.
I need to still be me for longer.
I am hopefully going back to St Michael’s Hospice for some respite care and to give Louise and the families and friends a rest, next Wednesday. I will be in the hospice for two weeks. I want to be in the hospice for two weeks, to rest, to recuperate. I also want to come out again, to my son, my wife, my family and friends and my home.
This doesn’t happen in my dreams at the moment.
Like I said, good days and bad days, we all have them. Let’s hope that’s all it is. A bad day.
All my love,
This is one of the most touching posts for me, especially the line ‘I need to still be me for longer’. It brings back one of the days where Neil was frightened by his condition. It was one of those days when we knew we were losing the battle, and it left us with little energy to carry on. I just wanted to hold him and tell him everything would be OK, but it would be a pointless thing to say.
The Plattitude was back online but the comments facility was still down. I wonder now if this contributed to his honesty about his feelings. He would have felt like he was talking without audience, which may have helped him let go with his emotions.
I couldn’t begin to comprehend how we would cope if his eyesight was taken away. The trust he would have to put in others would be frightening. There had been no gradual change, he just suddenly had blurred vision and became long sighted. We were confused and very worried, as to the best of our knowledge, vision was one of the very few things not affected by motor neurone disease.
I managed to arrange for an optician to come to the house and sent an email to Neil's consultant to ask if this could be a progression in the disease. For once, it appeared to be the result of fatigue and from then on, he started to wear reading glasses whilst writing his posts on Plattitude, but only if the blurred vision occurred. Glasses didn’t sit well with the ventilation mask.
As for the slurred speech in the morning, this was something we had to learn to live with, it was there to stay. I was now translating for both of the boys in my life as Oscar was exploring his voice just as Neil began to lose his. – Louise (2013)