Is it painful?

I am often asked this. No, but it is uncomfortable, day and night. (Yes, we do have good equipment). Basic tasks take much longer and I need help. I slur some words, and speaking is an effort sometimes. I am often very tired. Jane does everything to help me, day and night, as well as the rest of family life. Jampi is so good to have with us; an incredible person in so many ways. People come at the right time. We are grateful for the support of everyone; we are interdependent in this world, but most of us live too much by ourselves. 

We do a lot of stretching, movement and voice work every day.

Some pictures of Kings Langley and St Andrews (thank you Nicky and Ally). 
The other question: how are you? Ask any of us, it changes by the hour, but the challenge is always there. It’s painful in ways other than physical. We appreciate your visits, hospitality, generosity, conversation, practical help, humour and listening.



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Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

4 thoughts on “Is it painful?”

  1. How wonderful to see children climbing trees and playing in water – well done Andrew ! I took my grandchildren to a farm and they just loved feeding the pet lambs. Such a pleasure. My brothers continue …..lots of help and advice …. doorways being widened to accommodate the wheelchair – the old farmhouse is quivering!!

  2. Love, love, love the tree climbing picture. There should definitely be more of that in life. It reminds me, bear with me, I am going off at a tangent, of a monkey puzzle tree my parents had in their garden. A wonderfully named thing, should you ever see one. X AB

  3. Yes it is painful in other ways……
    Can’t express it here…..
    It’s so unbelievably painful that you can’t think, speak and carry on with daily tasks… But this is what you need to do…. because this thing called MND is relentless in all aspects of life….. Where does the norm begin and end…. We are constantly adapting on every level….
    We stay above the tidal wave sometimes but are dumped by it and are winded more ….. Jane (Andrew’s wife)

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