Andrew’s PN Journey Timeline 2022

71 years old

Now that I had the trike, over the winter months I had planned for and set in motion an extended solo international trike expedition.

My thinking at the time was simply to get as much as I could done before my PN got any worse and stopped me.

The holiday in Madeira had shown me quite clearly that there is an insidious side to peripheral neuropathy, the symptoms had and do creep up without any warning, short haul flight now an issue, steps and stairs now an issue especially going down.
Simply going on holiday and sightseeing was now an issue because looking down whilst walking does limit the sightseeing experience.
So I needed to do stuff now, before I can no longer do it and the trike gave me a nice cosy armchair in which to do it from, and I could look around and sightsee as much as I liked.

I was able to get plenty of practice in using my trike in early 2022.
I started with short local close to home trips out of just a couple of miles and gradually increased the mileage and the locations on my trike riding.
I was somewhat lucky as I had a very good long distance traffic free paved cycle path near me and it was not long before I could quite easily travel over 20 miles in just a few hours so I knew my upcoming trike expedition coming up was doable.
It was so good to be out moving forward without all the hesitancy caused by my peripheral neuropathy.

Over the past couple of years I had made a point of booking in to see a doctor once a year regarding my peripheral neuropathy just to keep my symptoms information up to date. It was in the hope that someone just might be looking at my records, my data for research but I soon realised, no such luck, most probably the last thing on anybody’s mind.

Each visit to see the Doctor was an interesting experience because regardless of which Doctor I saw (and I never saw the same one twice) the procedures were the same, almost robotic in nature.
First I would need to spend at least 10 minutes explaining why I was there to see the Doctor after having spent a good few minutes trying to convince the receptionist to make an appointment days before in the first place. (obviously none of the information I told the receptionist was passed on to the Doctor).
At the end of my explanation and reporting how my symptoms had changed, the Doctor would ask, “any pain”, I would say “no pain”.

The Doctor suggested taking blood samples, again (which they did every visit) which involved making another appointment to have the blood taken.
And that was that, because each time the blood tests are taken if there is no abnormality with the blood tests I heard nothing back.

I’d come to realise early on that unless it involves a pill (money) there would be very little interest in my plight. No pain, no gain! – sorry, that’s the cynic in me showing.
It came as no shock to me that I was now convinced “I am on my own here“.
Hence the reason I had sorted out my own regular exercise regime and had started the simple planning needed for just getting on with my life with PN.

2022 did actually end up being a bit of an important milestone on my PN journey though. More on this later.

I started my recumbent trike trip from Devon to Santander Spain via Roscoff France on 29th May 2022. Mainly camping with the occasional B&B.
Trike to Plymouth, overnight ferry over to Roscoff France then trike south through France, enter Spain then carry on to Santander to catch the overnight ferry back to Plymouth on the 23rd June 2022.

I arrived back home in Devon on the 24th June 2022.
Total tour miles completed on the Trike 850 miles – 1367 Kms.
Total elevation climbs 28,772 feet over the 26 days.

You can see my complete Recumbent Trike expedition here

From my own peripheral neuropathy point of view this trike expedition not only taught me a lot about my PN but also made me realise that a trike was not the best mode of peddling exercise for me. Not to mention the actual transporting of the trike.

Here’s why:

Although I had plenty of rides out and practice before this trip and covered very many miles I soon realised within a couple of days of starting that continuous days of peddling were not good for my peripheral neuropathy.
I found that I was now doing very little walking, I did try and start the day with a short walk but soon found that I was always eager to get peddling and do my daily quota of peddling miles.
I also tried to do my daily floor exercises but these too soon fell by the wayside.

Because of this lack of walking and the increased time spent sitting it very quickly showed me that for me, walking and not sitting was the best way to keep the dreaded PN symptoms at bay.
I had already years before found that sitting was not good for me.

I tried taking time off the trike and instead of peddling I pushed the trike along for about a mile or two, this proved a much better way of getting my ‘steps‘ in.
There were a lot of hills so it was sometimes easier and faster to push rather than ride.

For those that don’t know, pushing a trike is not easy, it’s an awkward machine to push. I did develop my own way of doing it by using the back of the seat to push on and using this method also enabled me to steer it by pushing on one or the other side of the seat.
It was not an ideal walking posture, bent over in order to miss kicking and tripping on the rear wheel but I was walking.

I did get some other aches and pains along the way but I could not put these solely down to my peripheral neuropathy, they were more like my body struggling to adapt quickly enough to this new daily routine. The trike seat was comfortable but it was inclined backwards so I was laying back slightly as I rode.

I did thoroughly enjoy the trike trip and I have no regrets at all about any of it.

It showed me what was possible albeit, maybe at a peripheral neuropathy cost later on down the line.
It was during this trike holiday that I started to give some thought back to a two wheeled cycle as that would make walking and transport so much easier. I later discovered that walking with a bicycle was for me better than using a walking stick.

Before going away I had booked a Doctors appointment, which I had done every year or two since 2017. It was a way for me to just check up on any new developments in the PN world and also, I thought, a way for Doctors to monitor my progress or lack of.
Sadly, it had become obvious to me that actually none of them had any real interest.

This Doctors appointment was booked for July 2022 and it turned out to be a bit of a revelation, a milestone.

It just so happened on this occasion the Doctor I saw was a locum, newly qualified and still possibly in some kind of monitoring stage as there was another older Doctor present looking on.

I needed to explain my history of PN and mentioned that I had just returned from my trike expedition, which they were most interested in.
I explained that since returning I was noticing quite severe muscle memory problems.
Now I was back on two feet for several days since my return every time I walked my steps (my legs) felt like they were peddling.
A really strange sensation. I couldn’t work out whether it was just age (71 at that point) or a peripheral neuropathy thing.

I had a few other niggles as well, like my feet were now feeling numb, swollen, tight in different locations at different times, my left foot especially.

The Doctor did some reflex tests and the Romberg test and the walking in a straight line one foot close to and in line with the other.
The conclusion even though I had explained I had seen a consultant way back in 2017 and they had signed me off and back to the Doctor at the time, was that I should be seeing a consultant neurologist in Exeter hospital ASAP.

So after multiple visits to my Devon Doctors surgery since 2017 where they just requested blood tests each time, this newly qualified Doctor (probably still training) arranged an appointment with my local consultant in my home county straight away. Go figure!

I attended the Consultants clinic on 15th August 2022 and in the letter that followed 4 days later I now had another diagnosis:

Peripheral Neuropathy – probable sensory axonal neuropathy focal dystonia

Also a plan was put in place for a follow up in 3 months and tests to be carried out in the next couple of months for:

• MRI whole spine
• Nerve conduction studies
• Extensive peripheral neuropathy screen-normal

I attended all these tests in September 2022 – letter confirming results for MRI received 3rd October 2022 but all the other tests I had to wait until 6th April 2023…

My follow up that was recommended for 3 months later actually occurred on 28th February 2024 – 18 months later!

Multiple attempts I made to chase up results and follow-up appointments were often met with nothing on file or delays because of Covid or the favourite was, someone will get back to you but never did.
That’s the NHS for you, you get what you pay for.

I’m old enough to know that SH** happens so I just got on with coping as best I could with my PN, carrying on with my exercise routines, which by now included walking at least 10,000 steps every single day, except in Icey and slippery conditions.

I had by now given up on the recumbent trike as my preferred form of peddling transport and had bought myself a Brompton M6 C-Line Explore folding bike in August 2022.

And once again at the end of 2022 I found myself planning another solo foreign cycling trip, this time SE Asia in 2023.

Summary of my PN symptoms at this stage (up until end of 2022):

• I do believe that this Trike trip in 2022 did alter my peripheral neuropathy symptoms, everything, the feelings, the sensations became more intense and more regular.
• More frequent loss of balance when out walking but not enough for me to consider using a walking aid, yet.
• Immediate loss of balance when I closed my eyes.
• Often feet felt cold. Cold when going to bed and toasty warm in the morning.
• Cannot run or jog.
• Sitting down in hard chairs (kitchen chairs) seating on Buses for more than 15 minutes and my walking is impaired.
• Short haul and long haul flights were now causing swollen ankles and walking issues.
• Sometimes walking upright, straight back, head up and looking forward into the distance as I walked but this is now seldom and most of the time looking down at the pavement in front as I walk. (Brings a whole new meaning to the song “Chasing Pavements“)
• More unaccountable fatigue.
• Stairs and steps were becoming more troublesome, especially going down.
• Starting to feel that my gait was changing and my stride length appeared to be shortening.
• More intense feelings – sensations of numbness, tightness and swelling in feet, ankles and lower legs more often than not, also a sensation like I was wearing tightly fitting knee length socks sometimes occurring.
• A constant reminder everyday on waking that my body was no longer what I had once considered normal.
• I am now cycling and it’s a great feeling being able to move forward without any balance issues.
• And luckily for me, still no pain.