Several readers like to know how my health is. Voice totally gone. I have 3-4 food supplements per day through my PEG. My tongue doesn’t move sideways, which makes eating difficult. I get tired quickly. Sebastian drove me in the wheelchair today, and it was exhausting. I cough and retch, both of which are uncomfortable. The loss of voice is worse than not being able to use my legs and arms, and eat. The exhaustion is immense. I overheat such that I feel very hot where others are fine.
When I am with family or outside home, I feel how much strength and life I’ve lost. It’s pretty good when your ten year old son asks to take his dad out. We went to Gadebridge Park, and I just wish I felt better. Sebastian is upset and frustrated that his dad can’t do anything with him. If you play golf, and want to help, please contact me.
When anyone talks to me, or wants to have fun in the case of the kids, I want to react. This usually results in a grunt or weird noise, followed by painful coughing. I am training myself to be more still, something others need to get used to, expecting a reaction.
The kids sometimes see their dad like a toddler or baby. Not surprisingly really, when I am laughing, dribbling, and turning my head from food. Such is MND.
I need people to use the alphabet chart, because the eye gaze is not always on, and it is not good outside. Picture an A4 laminated card in landscape. There are five numbered rows as follows –
One – ABCD
Two – EFGH
Three – IJKLMN
Four – OPQRST
Five – UVWXYZ
The person with me reads the row numbers until I indicate the correct one, repeating the same for letters. The faster people can guess the word, the better. We have had a lot of laughs, and, being polite, there has been a wide range of capability.
Jane, the kids, Caron and Gerwyn spent a week in the Algarve, Portugal. I asked Sebastian how it felt. “Great, it was holiday.” That answer said a lot. Valentina showed me the photos. Very happy that they could experience something different.
Woody used his local connections to secure admission for Sarah, Vincent and I to the house at Ashridge, now home of a management college. Built in Tudor style, it was the home of the Duke of Bridgewater, canal magnate. He did things in style. For lunch, we perched on a tree trunk near the monument, enjoying Woody’s homemade tomato soup (delicious). Afterwards, I cried as the memories of Ashridge with our children came back. Woody commented that his soup had never had that effect on anyone before.
Under the instruction of a great guy, I am playing chess, practising using chess.com. I am also listening to lectures from the Teaching Company, provided by a friend. Together with Sarah, and with talented and kind hearted people in our community, I have been working on getting our books published. I send ideas to improve the eye gaze to the tobii dynavox product management people. I have time for these things, but I would rather be the dad, doing his bit.
Easter really is a time of new life, be that the resurrection, Spring flowers, painted eggs and chocolate. Such was the church on Easter Sunday.
I enjoy the visits of Claudio and Federica, marvellous to hear Italian! I enjoy visits by people from far and wide.
I think I write about things quite positively, but I can tell you that it’s no fun having this disease.
The illness is rubbish for everyone, and any positives are completely outweighed by the negatives.