National Hospital for Paralysis and Epilepsy

It is now called the National Hospital for Neurology and Neurosurgery. As I sit here, the day before a feeding tube is inserted in my stomach, I reflect on how Valentina and Sebastian feel about the changes they’ve seen in their dad. What a thing for children to experience. They need a strong male and I am no longer that person. Summer holidays coming, always time for family adventures, but now I am sad I cannot do what I want. There is so much I want to do with the children every day but I am stuck. I am so sorry. Acceptance, yes, but real sadness.

Tube now inserted, grateful for our NHS; care at this hospital very competent and nurses understand my challenges. Twelve hour shifts; teamwork under pressure. Passion and compassion. Back to the garden with Joao, who went to the operation with me.

Looking up at the clouds, trees and buildings from my stretcher, the idea of a flat bed tourist bus comes. World looks different; give me 5% if you launch it.

Getting help at 3am from a nurse, when future appears grim, focuses my mind on the pay people receive. How kind she was.

Thanks to the people who made the Neurological Complex Care Centre a reality.

While I have been in hospital Jane moved my bedroom downstairs, put the dining room in the lounge and made a study upstairs, with help from the Hungarian posse. Oh, and keeping the family going.

Angolan, Romania, British  Indian, Brazilian, Italian, Philippine staff; folks, if you don’t like our multicultural country then there’s bad news; it’s too late. This MP, murdered today, said it well. The chapel in the hospital a welcome place.

Back home, Sebastian asks what it was like; I can’t talk and Thomas says ‘your dad will talk when he is feeling better.’

Today I cry standing on my frame. Valentina asks how it feels; like being punched. She hugs me and plays ‘Send Me An Angel’.

My dad feeds me porridge.

I am so grateful for Jane and Jampi as we adapt again.

These photos make me smile.

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 “National Hospital for Paralysis and Epilepsy”

  1. Andrew, I know that I don’t truly know you, but I have to disagree with you, just one point. For me, being strong is not the physical is is about emotional strength and character and that you have in spades. It is plain its from how you care, how you worry about others, how you think of others, how you enjoy the sun, when it is out. You are strong. I am sorry that your strength is being shown by ALS, but you so are.

  2. Your sadness must be overwhelming Andrew. I have no words of any value but am thinking of you and yours, as ever, Lisa X

  3. Hi Andrew, long time no hear. You surely must feel bad with latest developments, but still no reason to give up. Remember I told you : the brain rules the body. Most of last night I spent watching the 24 hrs race of LeMans and I learned the story of Frederic Sausset. In my view he sets a big example for desperate people…an example to follow.
    I’m sending you this link hoping you gain spirit, hope and strength out of it !
    with best regards
    Thomas ( now ex-DuPont)

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