August came and suddenly the muscles in my left arm were quivering… all of the time. I opened my mouth to look at my tongue and was shocked to see that it too was quivering uncontrollably. I was pretty sure that my tongue somehow looked thinner and ‘wasted’ too. We looked up ‘muscle tremors’ (fasciculations), ‘slurred speech’ and ‘cramps’ on Google. The answer was motor neurone disease.
I booked an appointment to speak to a doctor about my symptoms on 6 August. The only one available was with a doctor at the Watford Extended Access Hub. It was a telephone consultation and we talked through my numerous symptoms. I said, ‘I think I might have motor neurone disease’. The doctor didn’t disagree, and he said he’d refer me back to my GP practice for a further consultation.
The next day I had a video consultation with a GP from my surgery. After talking through the problems again the doctor asked me to lift some weights on camera and she looked at the fasciculations in both my arms and in my tongue. She immediately initiated an urgent appointment for me to be seen by a neurologist. The possibilities to be explored were either a brain tumour, or MND.
I could now feel fasciculations all the time in both my arms and in my back around my waist. It was a funny tickly feeling that has never gone away.
I could no longer raise my left arm comfortably to open the garage door, and actually both arms seemed to have insufficient strength to lift things above my head. It became very difficult to continue to do my online keep fit classes because it was just too exhausting. My speech was definitely getting much more slurred to the point where I began to avoid answering the phone.
By June some new problems emerged. My voice was really lacking volume and I began to notice that I was slurring words – it was as if I’d had too much to drink all the time.
How odd. Now there was something wrong with my left hand. It was really difficult to squeeze shampoo out of the bottle, and almost impossible to use nail clippers to cut the fingernails on my right hand. Around the same time, it also became impossible for me to cut my toenails – I just couldn’t bend down to reach without instant, painful cramp in my legs.
I still had a slight cough, and I had a real tickle in my throat when drinking water and cups of tea. Very uncomfortable. On 19 June I remember choking when eating some crisps. Three days later I developed a chest infection that required antibiotic treatment. It was hard to get help for a chest infection in the days of COVID-19 and the first hurdle had to be a negative test result. Naturally, we associated this chest infection with the pneumonia in Vietnam. Later it became obvious that both events were probably actually cases of aspiration pneumonia caused by choking and inhaling particles of food into the lungs.
I made good progress my recovery from pneumonia. We couldn’t go anywhere because of the UK lockdown, but the weather was warm and sunny, and it was so good to be able to relax and recuperate in the garden.
We landed in Hanoi at 5.20 am and went straight to our hotel where we’d booked a room for the night that was just ending. It was good to get some proper sleep before starting our day.
We had two days and nights in Hanoi, then one overnight stay on a boat in the spectacular Halong Bay, then on to the cities of Hue and then Hoi An. Some beautiful places and great experiences but our escorted group tour was very different to expectations as we were the only people in the group! At each location we had our own personal tour guide and a dedicated driver. It seemed as if a lot of people had dropped out of the holiday. It was very noticeable that tourist sites and hotels in Vietnam were beginning to suffer because Chinese visitors were totally banned from the country because of the Coronavirus epidemic. There weren’t too many people around.
On Saturday 7 March we arrived in Ho Chi Minh City and met our next tour guide and driver. After a very hot and exhausting day of sightseeing on Sunday 8 we went back to our hotel. During the evening, I began to feel feverish and had a high temperature. Not surprisingly, the hotel manager referred to his COVID-19 contingency plan and we were both immediately whisked off to a public hospital with a quarantine building patrolled by armed guards. All of belongings, bar just a few we could grab in the ten minutes we were allowed, had to be left in the hotel room. We didn’t see our suitcases again for four days – they were packed by hotel staff (presumably in Hazmat suits).
The quarantine hospital had the most basic facilities and the worst food imaginable. The only way we could enjoy anything remotely edible was to get the odd McDonalds meal smuggled into the hospital with the help of fellow patients and the nursing staff! Outdoor and indoor temperatures were in the high 30s and there was no air conditioning. One plus point was the fact that they provided free Wi-Fi for the detainees – mostly Vietnamese nationals but also a few unfortunate tourists like us.
We were tested for COVID twice (fortunately negative for both of us both times), however X-rays showed I had pneumonia. I was immediately treated with oxygen, antivirals and intravenous antibiotics and, despite the language barrier, my treatment by the medical staff was very good.
Our beds in our four bedded room – one sheet, no pillows
By Government decree we had to be incarcerated for seven days. However, after five days we were able to negotiate our way out of the quarantine hospital and into a private American-style hospital where we both stayed for a further 10 days until my antibiotic treatment came to an end. Sue slept on the sofa in my ‘luxury’ hospital room as we both had to be in isolation.
Air conditioned luxury at the Vinmec Central Park private hospital
The second hospital was lovely, and thankfully was funded by our travel insurance company. Our holiday visas expired while we were in the hospital and contrary to all the rules, the British Vice Consul agreed to send her driver to the hospital to collect our passports so the visas could be renewed. Meanwhile, back home, our son Richard was able to book us two business class seats (all that was available) on the very last direct flight from HCMC to Heathrow on 21 March – nearly a full week later than planned and just hours before the first UK COVID-19 lockdown started. What a relief to be home!
Week commencing 10 February – I performed in the Abbots Langley Gilbert & Sullivan Society’s production of Ruddigore at Watford Palace Theatre. This was my twenty-fifth performance at the theatre with ALGSS – something I really looked forward to every year. But this time something wasn’t quite right. My singing voice wasn’t very good – it sounded really thin, and I had felt very tired during the long rehearsal period.
I really struggled to get into and out of the heavy costumes and there were four costume changes in all for every performance. All around me members of the cast were suffering from really bad colds and respiratory infections. The next week I developed a really bad cold with a very annoying cough. The news about the Coronavirus continued to develop. There were now confirmed cases in the UK. Had I had it? On Friday 28 February I still had the remnants of the infection and was taking decongestants and Benylin for the annoying cough. We drove to the airport for our flight to Hanoi and discussed the fact that things might be very different by the time we got home.
It was getting really difficult to climb out of the bath, and also really hard to stand up from kneeling on the floor. I put it down to age.
In the news there were increasing reports about a novel Coronavirus that had originated in Wuhan in China. The city had gone into lockdown, but cases were beginning to emerge in other parts of the world, for instance in Italy. We began to get a bit concerned about our planned escorted touring holiday of Vietnam and Cambodia. We’d booked it about ten months before and were due to fly from Heathrow on Friday 28th February.
A very strange thing began to happen when I blew my nose. Instead of air rushing out through my nose, a strange noise would come from the back of my throat. It was as if the muscles there had weakened. Very odd. I didn’t think about it too much and definitely not something to bother the doctor with.
Anyway, I booked to see the local osteopath who told me that my left shoulder problem was due to a sub-acromial bursa, and this could be relieved by massage, manipulation, ultrasound treatment and exercise. This regime seemed to bring a bit of relief after about six sessions, but I’ll always wonder whether the problem was actually an early indication of MND affecting my left arm – something that came back with a vengeance two years later.
Around the same time tiredness was getting more and more noticeable, and I was definitely running out of energy. After a blood test my GP increased my daily dosage of thyroxine (that I’d been on for twenty years) from 175 mcg to 200 mcg. This is a pretty big dose, and it didn’t really help.
My shoulder was no better really, and now I was beginning to get more severe cramp, this time in both my legs nearly every night. They would seize up while I was sleeping, and I would leap out of bed in agony.
I went to the doctor to talk about these things, and also my increasing tiredness. I was told I should have made more than one appointment if I wanted to talk about more than one problem. Not very helpful.
My GP prescribed Quinine Sulfate for the cramp and physiotherapy for the shoulder pain. The NHS physiotherapy was pretty disappointing; in effect I was only given a set of exercises to do on my own at home. No-one examined my shoulder or gave me a clue about what the problem might be. After about four sessions (during which the physiotherapist seemed to become increasingly frustrated with my lack of progress) I decided to discharge myself.
I had taken a tumble down some steps in the garden a few months earlier so we got a local craftsman to install some handrails.
Out of the blue I had quite a lot of pain in my left shoulder and weakness in the upper arm. Had I pulled a muscle during a ‘keep fit’ class? We went on holiday to the USA in October 2018 and opening the driver’s door was really painful.
