April 2025: Holidays and Discoveries

First Section

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It started around April 2022. I promise that this will not be all gloom.

It was then when things were going wrong. James and Rosie, my step children (children! in 2022 they were 41 and 35) said they were worried about me. I was forgetting things, memories, scrabbled words, or nothing came out. Chris, my wife, said that a few people had “lost my spark”.

I didn’t know what was wrong, but I think that having a Interrail holiday didn’t help.

It happened like this.

In May 2022 Rosie rang Chris to say that we mustn’t miss an opportunity: half price tickets, a flash bargain, to celebrate 50 years of Interrail. Chris was enthusiastic, but as the tight schedule to get tickets was running out I was more worried. I always worry, whatever it is. The tickets were purchased and then we had about 4 months to arrange our tour. That meant setting out the routes, allow time for connections, contingencies, changes of timetables, trains mysteriously disappear, no seats reserved. And book the hotels. My tactic was to do nothing and hope that it would be called off. Chris, who is legally blind, was determined. So 4 months dwindled to 2 weeks.

I had a couple of long train rides in France in the 1980’s. The trains were lazy. Passengers didn’t get on the train until the “Garde de Train” whistled a few times. It’s different now. The stations have loads of platforms. 36 platforms in Basel Station is daunting. The main Berlin station has platforms that go east to west, west to east, and south going north, and north south, and suburban platforms, and the underground. Changing trains was a nightmare (how much time do we need if the train is was running late; how much time do we need to get from the platform 1 to get to 36). And don’t say that Swiss and German trains always arrive on time. They were the worst.

Day 1, Brussels. Good. Nothing went wrong...

except that, when we got off the train, and 5 minutes from the railing station, we saw a man on an electric scooter, probably 40 years old. We saw the tree roots, he didn’t. It was serious. Fortunately there was a hospital adjacent, and some people could help. My only contribution was to try to speak, in Spanish, in Brussels. Spanish? Why?? What was I thinking???

Next place, Berlin, 4 days.

During the holiday I was checking and checking, and again, checking. I was getting apprehensive about small things. What I didn’t do was to see the water from the shower cascading into the room. Gallons. I didn’t expect that. Chris was having a shower. She couldn’t see that the shower had a very shallow basin, and she likes a long shower.

The staff were not happy, and flowers were needed to placate the concierge.

Munich. 2 days.

We thought that we would avoid the Munich Oktoberfest. Who would know that it starts in mid-September? Arriving at the station, we were joined by middle aged men in costumes looking like boy scouts, with the addition of steins of beer and strudel. The same for the women.

Up to this, the train journeys had been a disappointment. The Eurostar from London St Pancras sets off for a couple of minutes and then it burrows underneath London. It pops up in Kent, but it’s not very nice so it’s time to go under the channel. The tunnel takes about 22 minutes. Then France and Brussels. Picturesque landscape? Well, no. When there is a beautiful landscape it is masked by barriers to enhance the speed (300 km), or back under tunnels. All boring journeys up to now. Then it all changed for Munich to Innsbruck, and thereon.

Innsbruck, 4 days, no we didn’t have a go on the Olympic Ski Jump.

The Munich to Innsbruck train journey was leisurely with the train sweeping through a sequence of valleys. Innsbruck greeted us with a sequence of road works, and then our taxi crossed the river and we checked in to the Rufis Gastro. We got an upgrade for our room, and free passes for the buses and trams. There was sun, but also misty and moisty. I know we stayed for 4 days, and we saw a lot, but I don’t remember much.

What I do remember was Vera. Yes, Vera, ITV’s coquettish sexagenarian (I admit it, I used the thesaurus just then). We watched it in Innsbruck, dubbed into Austrian, and then saw it in Italian, and France. Such a pity that we didn’t manage to find Vera in Belgium or Germany because, somewhere, she was there. The best translation of “pet” was (French) “cherie”.

Back to Innsbruck. We are continuing through the valleys towards Italy, the mist disappeared, and the sun took its place. The valleys broadened out, and then the train sauntered through the plains, and then to Verona.

Our 5 days were mostly devoted to pizza, ice-cream, more pizza, and a miserable sandwich in a miserable outside cafe. We found time to look at the Arena di Verona, Giusti Gardens and we had a day trip to Venice. Thinking back, I had pizza in Venice as well. Chris was probably more sensible.

Leaving Verona we changed at Milan, and then Switzerland. Beautiful lakes, fantastic landscape, awesome engineering along the steep banks. It took most of the day, including delays, to get to Bazel. We arrived at our hotel at about 7pm, and left the next day about 7am.

Bazel, the train station with 36 platforms, was a short trip to Mulhouse just inside France. We changed to Paris. We ambled to Paris. This was my favourite journey. Slow, and twisting. Chris and I had first class tickets. By this time we were not looking our best. Other passengers thought that if we could travel in style, they should be able to do it. The guard enjoyed banishing them to the second class.

The first we saw of Paris was the Basilica of the Sacré-Cœur. Utterly beautiful. We saw it close-up the following day. It was still beautiful, but we had to share the forecourt with tourists, and also a number of young women, maybe students, for petitions for people for the deaf. Then they showed the other part of the petition suggesting that you donate €20. Each. We were sure that they were deaf, but we were not sure that the donations got into a charity box. We were smug. We weren’t going to be caught out like the others. But that was because we got caught by the same scam in Verona. At least we only gave €5.

Paris was the last place before coming home. We were having a great time. Paris is beautiful, good cocktails, and food. On the second, and last day, we went to the Cite des Sciences. Absolutely fabulous. A Planetarium, Aquarium, Cinema, and a submarine which was in use until 1982, and now you can walk through it. Then we were off to the Gare de Nord to go home. We were both tired from the 21 days, and the last days with a hard mattress in the hotel. Chris didn’t see the bench which sent her flying.

We weren’t sure if it was just bruises. Chris made a sling. She dosed herself with small bottles of wine, (and it would be churlish not to join her), and got on the Eurostar with more bottles of wine.

Getting home, A&E confirmed that she had broke her shoulder, and elbow. That did for Chris’s table tennis for some time.

There were many beautiful places we saw on our interrail adventure, and some bad. I was very happy to get home.

……….

It took me about a year to decide to go to my GP.

The GP asked me a set of 30 questions ranging between arithmetic, knowledge, remembering sequences. “Normal” people get about 25 questions correctly. I got about 20 right (I thought I had done much better than that). It wasn’t OK, but it maybe on the border. See how it goes.

A few weeks later I got skin irritations, mostly on the legs and arms. At night I was woken maybe 6 times to put some more gunk, or also having a shower. The creams recommended by the pharmacist were not effective. My GP’s prescribed something more powerful.

Meanwhile, Chris had done some research about what may have been going on in my head. 15 years ago I had sarcoidosis. What? You have never heard of it? It pretends to look like nasty things like lung cancer, or blood cancer. You can die from it, if it isn’t treated, but steroids will generally do the job.

You have to ask Chris about steroids and me. I think it is a mild, inconspicuous, gentle tiny, tiny thing. She says that I went berserk for a year. It is true that when the consultant said he was going to reduce the dose I said “are you sure?”

One of the indicators of sarcoidosis are skin irritations. Chris saw there was a variation that could affect the brain, spinal cord, and other parts of the nervous system. So Chris and I went to see the GP to see if it could be sarcoidosis. He was doubtful, but he sent me to have a chest X-ray which is where the pesky sarcoidosis generally hides. Nothing. I suppose I should be happy to have a healthy chest.
……….

In 2024 Chris and I decided to have a Saga Holiday. 10 days in Sicily, staying at 4 different hotels. It felt like a half-way to going on a cruise, a bit, maybe.

Sicily was beautiful, and the weather was good. It was hectic: breakfast was 7.30am and we had to be on the coach at 8.15am. We were a party of 40 on the coach plus one driver, and the organizer. She was amazing, working from 7am to 10pm. We were told that groups are usually of 25 so she had a hard time.

We were surprised that everyone gelled, and by the end of the holiday we felt that we had made friends.

The Saga Tour was about 20 months after the Interrail holiday. I had changed. I used to check things. This time I left 2 things in two different room safes. I just opened the safe, but I didn’t take our some of the contents. And it was all my fault.

I don’t think we will go on a cruise. I had been the carer, but not now. Now Chris, legally blind, is the carer.

……….

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 for my 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.

……….

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.

……...

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. I think 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.

And this is how I have written this.

……….

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.

……….

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 (well, he would, wouldn’t he). 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.

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.

……….

I can’t remember, and I can’t do the most easy things. I have lost two trolleys in supermarkets, and I have twice paid for things that I have left in the shop.

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.