A few weeks after going to the doctor I got skin irritations, mostly on the legs and arms. At night I was woken maybe six times to put on some more ointment. The creams recommended by the pharmacist were not effective. My GP prescribed something more powerful.
My wife Chris had done some research about what may have been going on in my head. Around 2007 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.
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.
The Saga holiday
In 2024 Chris and I decided to have a Saga holiday. 10 days in Sicily, staying at four 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 organiser. 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. But just for a few weeks. Well, you know…
The Saga tour was about 20 months after the Interrail holiday. I had changed. I used to check things. This time I left two things in two different room safes. I just opened the safe, but I didn’t take out 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.
My sporting life
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 two years, my badminton is getting erratic, particularly when I am serving. I think that the 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 two 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 sympathetic for missing anything in your bag. Except your shorts. That’s funny.
Netball is fun. A few men play. I don’t think that aphasia hinders me while playing. The only problem is changing positions, or sides. 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 two or three things in a sequence is difficult for me. About 18 months ago I told the instructors about my aphasia. No problem. But recently I was floundering. Maybe I should finish.
But it would be a pity. Over the years (15 years) at least four different women have shouted out to me: “Nearly missed you with your clothes on.” Generally on the bus. The latest was about a month ago.
Another GP visit
Towards the end of 2024 my GP said he might be able to get me on sessions with 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 other aphasia types 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.
For further information and support, see dyscover, specialist aphasia support; Say Aphasia; and Say Aphasia Charity Hove.
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