It’s been a while


Overheating, Bletchley Park with Sarah, Woody and Vincent, two weeks without the eye gaze, Valentina’s first football match, difficulties with breathing, two supplementary PEG feeds per day, saliva and mucus build up, emails and letters from far and wide, West Herts Junior golf dinner, voice totally gone, great visitors, Mere Christianity, Book of Matthew, A Hertfordshire Valley, The Sun, Five Live, The Theory of Everything, book publishing, sometimes feeling it’s disappearing, counselling, not like the normal families.

I know that they are only trying to help, but I wish the positive spin merchants were more honest about the effects of this disease. Example – ‘you are still the parent.’ Well yes, but what a different one.

Overheating getting worse and worse. My face feels like it is on fire. Very uncomfortable without full air conditioning, need it to slow down. Trying to bring May appointment forward. As if MND were not enough. Our Australian mate said, ‘Take you to the vets and have you put down.’

My friend in the RAF is an expert in air crash investigation, saying incidents are always the result of multiple factors. Maybe that’s why I made the wrong decision with my eye gaze at Bletchley Park. Very windy day, unfamiliar place, Head of MI5 and Head of MI6, new error message. What is the lesson? (The day and museum were great – I could have worked there as a translator).

The pace of communication is totally different. Misunderstandings, but we get there. The letter chart needs patience, but is fun.

Hammers drew 1-1 at Valentina’s first match – penalty, sending off, fight in the stands, fan ejection, nice singing. She would like to go back.

The Theory of Everything – much I could identify with. The look up at the others at the dinner table, shot in blurred vision and that is how it feels; as if the old world is on another one to the one I inhabit. The moments when he watches others do what he cannot with his children. The quiet reflection after the diagnosis. Jane Hawking’s face as she tries to manage. The first sight of the wheelchair. The son driving the electric wheelchair. The film is very well worth watching. It shows the challenges of everyday life, which are immense, by the look of exasperation on the face of Jane Hawking.

I now feel more like someone with MND, and am adapting to a new way of being and to different relationships with everyone.

The golf dinner was by far the most difficult event that I have been to. It reminded me of the old life, seeing everyone. I felt a huge sense of loss with Sebastian, but grateful for those helping him. It was great to see these talented young people get the recognition that they deserve. We had fun at our table and Honor, as well as being a fine golfer, you’re also an engaging public speaker. Well done!

Thanks to everyone for their visits and help. Thanks to the carers and nurses, who provide practical and emotional support. I want to say a special thanks to Wil, who I know from my church. I also want to thank Caron and Gerwyn, without whose support we would be lost.

I am sorry everyone else, but the letter I appreciated most was from my mother-in-law. Thanks so much, Kevina!

There is hope even in tough times. You know, it also brings out incredible capacity and love. Jane, please tell your story one day.

A nice connection with South Africa….



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.

7 thoughts on “It’s been a while”

  1. Quiet peace. Silence and surrender. Hope. All we have is future hope. Grace. Tenderness. All love to you.

  2. Thank you for saying it how it is. MND, we hate that disease. It would be better if MND/ALS did not exist. Love to all who suffer it and their relatives and friends.

  3. Good to see your blog again …..I have been quiet but you know why ……sad to hear about the mucus build up …it was one of the worst things we coped with … brothers didn’t experience feeling hot ….the opposite in fact. I am so glad you have such support from family and friends and medics …….you are always in my thoughts. X

  4. Thank you for your courage and fortitude in continuing this blog and sharing your experiences. Your words travel around the globe and really do make me stop and think. My prayers are with you and your family that God will give you comfort and the peace that surpasses all understanding.

  5. Andrew you are such an inspiration for me. You are an incredibly courageous man. I appreciate you sharing your thoughts. Keeping you in my prayers.

  6. Enjoy your blogs Andrew and I look forward to our fortnightly outings. Will contact your social secretary to arrange something for w/c 20th March.

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