Mid 2025: Entry 2

Second Section
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Over the years I have played different sports. At the moment it is badminton and mixed netball (netball without running or jumping). I also go to aqua sessions at the Prince Regent Swimming Complex.

Since the last 2 years, my badminton is getting erratic, particularly when I am serving. The problem is that serving requires a decision. I frequently miss. What I now do is to aim to the middle of the service. I know the shuttlecock will go somewhere else, but if I don’t know where it is going, neither does the opponent.

Another problem is my kit. Trainers, shorts, top, shuttlecocks, racquet, etc. However many times I check, I frequently miss something. A few weeks ago I packed 2 tops and no shorts. A reasonable thing for a person with aphasia. I had to buy shorts from the reception. Friends who play badminton are still making jokes at my expense (the expense being zoggs swim shorts, £25). I was offended for a while. But I now realise that people will be symphathic for missing anything in your bag. Except your shorts. They’re funny.

Netball is fun. A few men play. I don’t think that aphasia hinders me while playing. The only problem is changing positions. It takes me time to adjust.

I go to aqua sessions twice a week. This is getting more difficult for me. Aqua is a sequence of movements. Anything that requires more than 2 things in a sequence is difficult for me.

I have had different instructors over 15 years. About 18 months ago I told the instructors about aphasia. No problem. Three weeks ago I was just floundering. The instructor, who I have known for 15 years, said as long as you are safe, you’re OK. But maybe I should finish. It would be a pity. Over the years there have been at least 4 different women shouted out to me “Nearly missed you with your clothes on”. The latest was about a month ago.

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Towards the end of 2024 my GP said it might be able to get me on sessions of Speech and Language Therapists. He also referred me to a neurologist.

The Speech and Language therapist is very helpful, encouraging, and gives me, and Chris, hope.

It looks like I have Aphasia. The expectation is that I have Primary Progressive Aphasia (PPA). Unlike more other Aphasia type caused by stroke, or brain tumour, it is a neurodegenerative disease like Alzheimer’s Disease. As I write, two days ago I was assessed for the Memory Clinic. I will be having a brain scan within a few weeks.

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I haven’t researched my condition. I wouldn’t understand it anyway. Chris does that. This is not because I am afraid, belligerent, cagey, deceive, expunge, fuzzy, gloomy, hopeless, insane, jackass, kicking up a fuss, laconic, maladroit, nonplussed, oppressed, pit of my stomach, questionable, renounce, sceptic, thick, unawares, vacuous, weak-minded. X-ray, yes? with zeal. That covers A to Z.

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 5 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 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 2 fingers. And I still type with 2 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 helpfuls. Have you heard of muscle memory? You’ll hear of it later.
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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.

Other heroes I have met are at the local Aphasia Social Club. It meets each week. I felt 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”. My parents insisted that my elder brothers should be called their full names. Not Andy. Not Dave. It must have been early teens that I realised that my parents always called me Jon (thank goodness they didn’t call me John).

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.
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Back to Primary Progressive Aphasia (PPA). You may remember that it is linked to Alzheimer’s Disease or similar diseases.

My Granddad and my Dad both had Alzheimer’s, although the Granddad was my Mum’s side of the family. My Granddad died around 1978. He had a hard time: Alzheimer’s was not so much understood then.

He 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 his stories, but, from his Alzheimer’s days, this was one of the best. He used to run a chicken farm, a small holding. 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 granddad 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, 5 years old. Granddad 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 Granddad confessed that he had whispered my name, and the chicken wrote my name. Well, of course.

So we come to my dad. He was finishing his education when the second world war started. He joined up for the army immediately after leaving school. When he was demobbed he joined the Metropolitan Police.

Dad used to go church religiously. When he came to stay with us he liked to go to church. I would go with him, but the only problem was that many of the Brighton and Hove churches are Anglo-Catholic. Dad used to get twitchy when the incense came out. So I took him to a church that looked more homely. I didn’t know it was a charismatic church, but I found it out pretty quickly. Dad’s hearing aids started noises. The only person in the church who couldn’t hear the hearing aid was Dad. It had a banshee like sound. Some of the congregation politely asked if they should pray over him. That was sorted. But the clincher was an innocent hymn. The words were written on an overhead projector (remember them?). The congregation saw the words “We shall fall to Jesus to save us all” (roughly). Dad saw “We shall FAIL….” He said “That’s not right” several times, and loudly. Eventually I managed to pacify him. We still had 30 minutes to go. Finally, at the door, we were told that we were very welcome to come next time, although I noticed that they didn’t invite us for tea and biscuits.

He was diagnosed with Alzheimer’s very late. If you have been concentrating you’ll know I have 2 older brothers. I also have a sister, Alison. Dad was in a care home, and Alison lived nearest to the care home.

Towards his end, my best times with Dad was singing on the telephone. I sent him song sheets. His favourite was “That Old Black Magic Has Me In It’s Spell”.

When I was a child, Dad would put me on his shoulders and sing, mostly “That Old Black Magic”. Similar to when I put Rosie on her shoulders. Same song.

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Chris was a member of a social group of people with sight loss. I was a volunteer/carer. Christmas 2006 was looming, and we wanted to do something different. Chris and I suggested that we could sing carols in a couple of two pubs. We knew a few of our friends would join us, loudly, and we had a few musicians.

We checked it out with the pubs, who were happy. However, when we arrived at the first pub we were told we could only sing 3 carols. We sang, and then went to “The Charles Napier, Southover”. They were very welcoming. We were delighted that one of the bar staff was called Holly. The staff distributed carol sheets to the regulars, thanked us for choosing their pub, and would we come next year?
I should say that the friends mentioned were morris dancers and musicians. Chris and I both had dabbled with bells and baldrics. There, it’s out.

The next Christmas it was more morris dancers/musicians, and it’s grown each year. We packed The Charles Napier each year, and we now have 2 or 3 evenings with other pubs. When we couldn’t sing in a pub for covid restriction we sang outside. This is not a “choir”. Everyone in the pub sings, the louder, the better.

So, what is this to do anything?

I can’t read music, but I like singing. I am not a good singing, but I sing loudly. But I can’t do much now. Since about 2023 I can’t read the words quick enough to sing them.

I went to a funeral last week of a dear friend who I have known for 50 years. There was a huge screen with the words for singing. I couldn’t read in time to sing.

I must do something about this.
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I can’t remember, and I can’t do the most easy things. I have lost two trolleys in supermarkets (and that is 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.