I haven’t researched my condition (aphasia). I wouldn’t understand it anyway. My wife Chris does that.
I forget things. I mix up words. Reading is difficult. I can’t ‘scan’ reading. It feels like I can only process one word at a time, and then after reading five words I forget the first word. I can only remember one thing. I have a card in my wallet with my address, landline, and mobile number.
Inside of me I think everything is OK. But it’s when I have to write, speak, remember, that it crashes back.
But…
There is something…
My dad had a typewriter. It was given to him for his 21st birthday. From about being 12, I used it. I loved it. Dad even got it serviced for me. Of course, I typed with two fingers. And I still type with two fingers, but on a laptop. There, I have done it again.
I frequently cannot remember a word, but my fingers on the keyboard can take control. Not all the time. But it helps.
“Take your time”
This is for the people who have to listen to me: receptionists, shop workers, rail ticket officers, friends, loved ones, anyone.
Frequently, when I start a conversation, I jumble all the words. You might think I should rehearse my introduction, but the conversation rarely goes as you expect, and, anyway, I often lose what I was going to say in a second. So I stumble through: “I am sorry – I mix up my words.”
Virtually every response is the same: “Take your time”. Then it’s much easier, and better, and I am nearly OK. You cannot overstate “take your time”. Thank you for your patience.
SayAphasia social club
Other heroes I have met are at the local SayAphasia club in Hove. It meets each week. I felt at home immediately, and I was made welcome.
Incidentally, I went to a party with people from the social club. It was two days ago (as I wrote it). Most of us couldn’t say “aphasia”. The nearest I can get to it is “Las Vegas”.
I have always called myself ‘Jonathan’. Not ‘Jon’ or ‘Johnny’. And definitely not ‘John’. It must have been early teens that I realised my parents always called me Jon.
Back to the aphasia social club. Most of us have tags with our names. Some of the people had difficulty with my name, so I now proudly have ‘Jon’ on my tag.
There will be a lot about SayAphasia.
More about PPA and Grandad
Let’s go back to primary progressive aphasia (PPA). You may remember that it is linked to Alzheimer’s Disease or similar diseases.
My Dad certainly had Alzheimer’s disease and this was documented as the primary cause of his death. Dad lived to around 90. He went up Snowdon when he was 80. OK, that was by the train.
I thought that my grandad had Alzheimer’s, but I was wrong. He suffered from dementia, but no diagnosis more specific than ‘senile dementia’.
My grandad told stories, often about the various places he had been, and I was spellbound. My elder brother decided to check to see if the tales were fabricated. They were true.
I can’t remember many of Grandad’s stories, but, from his dementia days, this was one of the best. He used to run a chicken farm, a smallholding. He had been retired for years, but he decided to have a few chickens in the orchard. Granny helped him. They put netting around; my granny inside, my grandad outside. Finished. But where was the door? They forgot the door. It took some time to get Granny out.
My personal story was when I was, maybe, five years old. Grandad took me to the barn to collect some eggs. He asked me to pick out a chicken to see if it had laid an egg. It had, and it had my name on the egg. I couldn’t believe it. Finally, Grandad confessed that he had whispered my name, and the chicken wrote my name – and I believed that.
You’ll hear about my mum, but not yet.
Memory loss – and a scan at last
I can’t remember, and I can’t do the easiest things. I have lost two trolleys in supermarkets (surprisingly difficult), and I have twice paid for things that I have left in the shop (and counting).
I am sometimes not nice. I have a short temper now. I don’t understand people. I can make jokes, but I can’t understand other people’s jokes. On a few times, friends and family have made a joke and I have taken offence. I know that I have hurt people’s feelings.
I don’t want to be like this.
I am sorry.
I have been scheduled for a scan. It was a couple of weeks later than expected, but Chris and I are pleased. Not long to wait.
Jonathan goes to SayAphasia Hove.
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