Conversations Down Under (5): My response

Dear Alison

Thanks so much for your email. I always look forward to getting news from you and to “comparing notes”!

However, my writing is also slowing down considerably. It’s not just the physical act of typing, but also just remembering what used to be easy functions, such as capitalizing letters, copying etc etc. My brain seems to forget momentarily how to do these things. I spend more time fixing spelling, putting in words that I have omitted and making corrections than I do putting the original note together! It all used to be so easy and especially when I was able to do it with all ten fingers! I am now down to about four fingers that work!

I also lose track of what I want to say and find that I don’t always finish off my thoughts. So I keep my notes for a while and fill in the gaps later!

My eyes are also a problem, and I seem to be losing my depth of perdsepion (that was supposed to be perception!). I read that your two eyes see the picture differently because they aren’t placed in the same spot. There are brain cells that then take the two pictures and make them look like one – almost like focusing the two halves of a pair of binoculars in order to get one clear picture. In our case, withCBD, those cells that do the focusing have been affected by the disease. That’s why we have sight problems.

Noise, even just normal sounds, drive me insane sometimes – whether it is just the wind, the vacuum cleaner, general conversation or really loud noises like dogs barking, shouting etc. I prefer to stay away from large groups of people now.

My body is not aching but I have experienced some pain lately, which is a new thing. However, I do get extremely weary and have to sleep for longer and longer periods. I also get out of breath and have problems coughing and swallowing.


The most irritating things right now are the spasms that I get down my left leg. My left bum is numb and I can’t find a place to be comfortable – sitting, lying down are problems and sometimes it is just better to stand. I have also become aware once or twice of the spasms in my right leg, so I think it has now crossed the divide. (Both my hands are affected already.)

My short term memory becomes increasingly affected and I have started doing strange things – like shopping and not knowing where I have left the goods, or standing in a queue at an ATM and then not knowing how to operate the machine! Life used to be so simple!!!

I have passed your message on to Lance – thank you very much. The radio programme keeps me going, but I must admit that sometimes I feel like it’s time to stop. However, there are so many people who listen and I don’t want to disappoint them. It also gives me purpose each week and something to look forward to.

 The last month especially has been very difficult for me, both physically and emotionally. But I am determined to pick up the pieces and start again.

In two weeks time, the musical Oklahoma is being produced here in Port Elizabeth and the proceeds from the premiere will be donated into my children’s’ trust fund. I worry about the future costs associated with my medical situation and of course their education. I studied inOklahoma(“Red Man”), and was made an honorary citizen of the State, so the show has a very deep personal meaning for me. One of the songs from the show, OKLAHOMA OK, is the state song, so we used to sing it often at school and sporting occasions!

Other than that, I have to slow down considerably. I find it difficult passing my days and not being able to do something constructive. I have also stopped driving (but have cheated once or twice!!) and that has been very difficult for me. It takes away your independence.

Give my regards to John. I have forgotten in which city you live!!

 I look forward to your next email. (I was just thinking I should have written this one without correcting the errors – and you could have guessed what I was trying to say! Thank God for word processors and spell checkers – imagine trying to do this on an Olivetti golfball typewriter!)

 Love and best wishes. Live strong!

 Kind Regards

One comment on “Conversations Down Under (5): My response

  1. Ed your words, ‘determined to pick up the pieces and start again’, seems to be my daily motto as well. Because of the constant deterioration one has to adapt all the time, whilst the list of things that I am unable to do gets ever longer. The past couple of weeks the attack on me has been very aggressive and has left me unable to stand or walk with the walker. But there is always a reason to get up and go. Be blessed.

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