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A long way from home

I was talking to friend`s at home the other day, they asked a question i have been asked a thousand times but never get tired of answering, except this time, it was different, they asked

Whats it like actually living with this disease day after day?

And out of nowhere, for the very first time, came the answer,


Within seconds i had to excuse myself to the bathroom and a flood of emotions overwhelmed me. it was as if the gravity of the situation had suddenly hit me for the first time all over again. I completely broke down and i am sure my sobs could be heard half way across the world. I felt so incredibly lonely , my mind was like a washing machine on spin as i tried to make sense of how i could feel like this with so many friends and family around me, but , i could not shake the feeling of loneliness.

Since meeting Elaine 23+ years ago we have always put our home life and children/ step children first, it has always been a place of safety, full of love and laughter, and just like anybody else, also sometimes full of tears and fears, but it has always been at the heart of everything we have done and do , and yet ?? there i sat, feeling as if i had never been this far away from home (As the song says) It is without a doubt the worst feeling in the world, but to me, at the moment, is the only way i can explain it.

Is it because all around me is becoming less familiar ?

Is it because my disease is progressing ?

Has my confidence levels dropped so much i feel so insecure in my surroundings ?

So many unanswered questions dear friends, so so many, and once the tears had stopped falling, the sobbing ended and i dried my eyes, i suddenly realised,


Read more from Norman McNamara in his latest book The Lewy Body Soldier

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