Well, oh dear! Aren't I terrible at keeping my blog updated. It's been nine months! So, what has happened? Does anybody even read this? I'm sure there must be some way I can check. This is the Web. Everything is tracked. Hmm...
So, I've been getting treatment for Myasthenia Gravis (MG), which included daily Mestinon/Pyridostigmine pills, fortnightly Immunoglobulin infusions (by drip and cannula at hospital) and two infusions of Rituximab, also at hospital. With these treatments I regained the use of my mouth, hands and legs. Since the Rituximab last October I no longer need to take Mestinon. It does appear that the MG has gone into remission. I still have some trouble with muscle weakness, neck pain, lack of stamina and my balance is slightly affected. But I'm far better than I was a year ago and I estimate that I'm about 80% of normal, at least what passed for normal in 2024.
I saw a neurologist in January and he was very happy with my progress. In fact, almost ecstatic. I got the feeling that not everybody responds as well as I have.
My university studies and my writing have been messed around. I was unable to complete any study in 2025, so I lost a year. However, I was feeling a lot better in November so I enrolled for a single Arts subject for the Summer semester, which Macquarie University calls Session 3. That was a success and I will certainly pass.
It was hard getting back into the discipline of studying. The thing that bothers me the most now is neck pain whilst sitting at the computer. That limits me to about four hours or so per day, but that's enough.
I've enrolled in two subjects for Session 1, the Autumn semester starting 23rd February. These are Popular Fiction (part of the English major) and Spanish Studies 1, a general elective. I've studied Spanish in the past but forgotten most of it and I'm certainly not fluent. The full Spanish major is, of course, eight units. To complete the BA degree I only need to do four - a "minor" - but I'm contemplating doing the full eight, which would give me a third major. Oh, um, I'm a glutton for punishment but I do love learning new things.
Regarding languages, in the past I've studied French, German, Latin, Spanish and a little bit of Ancient Greek, Italian and Arabic, but I'm only fluent in this one, i.e. English. It would be great to be competent, at least, in one more. I thought about French, because I probably know that the best, but in the end I've plumped for Spanish. It is so widely spoken and I have friends in Mexico. On my bucket list is to read Don Quixote in the original Spanish.
I want to get a car with a manual gearbox. Since returning to Australia in 2013 I've only driven automatics. My current car is a Honda CR-V, which is great, but it's an automatic. Now that I've truly discovered how your health can be stolen from you without notice, what was a mild want has become an urgent desire. However, manual cars are not as popular here as in the UK and, anyway, they're dying out because hybrids and EVs don't need them.
What I did find, when I started looking, is that the manual cars that are still around are mostly sports cars of some kind, all with six speed gearboxes. Which is interesting! I found a Renault Megane Coupé with a two litre turbo engine and a Hyundai Veloster with a two litre non-turbo. Both are hatchbacks. The Veloster is interesting because on the driver's side it has one large door and on the passenger side it has two small doors. I also found the Subaru BRZ and Toyota 86, which are the same small coupé jointly produced by both companies. These have a 2.4 litre flat four boxer engine and a two-door body with a small boot rather than a hatchback.
Of course, I also found a few plain hatchbacks, such as the Hyundai i20 and i30 and the Kia Cerato.
Most exciting of all, I came across a number of Holden Commodore SS-V cars equipped with a six-litre V8 engine and six-speed manual gearbox. I really fancy one of these big, fast and comfortable cars but... where would I park it? I have no garage to hide it in at night when it would be a hell of a target for thieves. And they're expensive, and Holden has gone. Where would I get it fixed if it broke down?
Anyway, that's all for now. My best wishes to you all.
I haven't updated this blog for such a long time. So much has changed for me.
Firstly, my right shoulder replacement operation in November 2024 went very well. I had to sit through six weeks post-op with my arm in a sling and strict instructions to move it very little and to do some basic physiotherapy. Then from 31st December I was able to use it again. I'm pain-free! Yippee! And it is much stronger. I then started more thorough physiotherapy.
On the afternoon of Saturday 11th January 2025... I lost the use of my tongue.
I went to see my GP on the Monday. He thought that I'd had a stroke and sent me to hospital. There was a long wait there. They had no further idea what was wrong and wanted to admit me but I refused.
Eventually, my whole mouth was affected and I started to have difficulty swallowing. I went back to hospital a week later and ended up being admitted. I could no longer swallow anything, even my own saliva. I was put on a drip so I could receive fluids. I was desperate and suicidal.
It was not a stroke. All the tests my doctor and the hospital did showed that I was in perfect health, in fact, excellent health for a 66-year-old man. But I was dying.
As a last measure they gave me a drug called Mestinon. Within twenty minutes I was able to swallow water again. They and I finally had an answer.
I have Myasthenia Gravis.
This is an auto-immune disease that attacks the nervous system and stops your brain communicating with your muscles. Untreated it is fatal. It is also permanent and chronic. I have it for life.
I was sent home with Mestinon, which helps to counteract the nerve attack but doesn't cure it. I got worse to the point I couldn't walk more than a few steps, my hands became paralysed and I couldn't hold up my head.
I'l cut this short. I'm under the care of a neurologist. I'm receiving regular immunoglobulin treatments, which should help repair my immune system. I'm now able to walk again and use my hands. However, I'm not cured. The best I can hope for is to drive it into remission, so the neurologist says. It's a slow road. I've had to stop my university studies and my writing, which is why I haven't updated this blog. I've now regained the ability to use the keyboard and mouse for an hour or so per day.
I'm sorry this is such a negative post. I have a long slow recovery to continue. I'm hoping that by July I may have improved enough to re-start university.
I hope everybody who reads this never has to go through anything similar. I'm very lucky to live in a country like Australia, with Medicare, NDIS and disability support that has saved my life. I'm very thankful. I hope one day to be able to work again and help to pay some of this back.
This problem has also interrupted my editing of The Quarry Issue 21 for publishing as a book, my model kit making that I love, and the writing of a novel that I've started. It also stopped me driving and shopping for a couple of months. I ordered groceries online but even that was difficult. I can now drive again and also work on the model kits.
Best regards to you all!
So... the Americans have elected Donald Trump. What happens now? We will have to watch that space. It seems that his idea for stopping the Ukraine war in one day is to tell the Ukrainians that they must let the Russians keep the land they have occupied and declare a ceasefire. Then presumably there will be a peace treaty to be negotiated. I don't think this is what President Zelenskyy and the Ukrainians want and it won't go down well with NATO and the EU. I think it would encourage Putin to invade Georgia next.
I'm still working on collating, editing and publishing the book for the university. I'm having most trouble with getting the images into the PDF at the high quality needed for printing a book. Interestingly, I've found that it makes a big difference what software you use to create the PDF. The best seems to be the "MS print to PDF" function, which I presume is a part of Windows. It creates a larger file but with the best quality images and handles the text well.
I've done some testing with Scribus as well and I think for producing a PDF that will be used to print a book it works better than Word, which I've been using so far. It's too late to switch over for The Quarry but I might use it for future books. Scribus is Desktop Publishing software, it's Open Source and a free download, although they do ask for a donation. But I'm coming to it too late to change horses now and it is complex to learn.
I'm going into hospital on 19th November for a shoulder replacement operation. It will be six to eight weeks before I have full use of my right arm again so this may interrupt the book editing. If I haven't finished by then I'll have to hand it over to one of the students who have offered to help.
Oh, BTW, I got 80/100 for my final work, a Distinction, so I'm happy with that. I haven't yet received the results for the full unit.
All for now! Enjoy life!
I have finished the work I need to do for university. I handed in my major work, a poem called Lost Home, last Sunday. It will also be included in The Quarry Issue 21, an online magazine produced by the university. This will be launched on 30th October, next Wednesday. I'll be at the launch event on campus. You can find this poem on this website at the "Poetry" link below.
I asked whether the university would be producting a printed version of The Quarry because I would have liked one as a souvenir but the university won't do that. There's nothing quite like a physical book in your hand with your own work in it. So I've volunteered to be the lead editor of the printed version. The university is quite happy with that so long as it is student-led and student-financed so it's all down to me. I have to ask permission from all the students contributing to the issue to include their work. I also have to find out who would like a printed copy. So far there are fifteen of us plus one maybe. It will all come down to cost and it has proved dificult to get a quotation for printing when I don't even know how many pages there will be let alone whether it will be hardback or paperback, how much colour printing, what kind of paper we want, what will be on the cover, etc. etc. So I have a lot to do. The major work will start once the new issue goes live
I know what the cover illustration will be (chosen by a poll) and I've produced a draft version, which I have printed and stapled into a booklet. I will show it to people at the launch event. I've also been in contact with a printing commpany but I have yet to hear back from them about costs. I'm looking at alternatives, other printing companies, plus self-publishing with Amazon or Lulu. the book will have an ISSN that the university will give me and it will be a published book. I'll update here when I know more.
This will be useful experience for when I publish and print my own books - hopefully not very far in the future.