Andrew’s PN Journey Timeline 2024

73 years old

I did slip over early in the early part of the year and sprained my left ankle, on reflection quite badly.
I thought I could walk it off as it was not feeling very painful but in doing so probably made it worse.

This was the first time that I had learnt the hard way about how peripheral neuropathy symptoms can alter the way one deals with things, it did not feel very painful at the time but now I realise that was most likely due to my loss of feeling in my feet caused by the wretched peripheral neuropathy. Another PN lesson learnt!
It was at this time that I also realised and accepted rather reluctantly that a walking stick was now part of my life for ever more.

After the Singapore – Malaysia Brompton cycling trip 2023 I was more than ever keen to get another one under my belt whilst I was still able.

I had three possible options on my hope bucket list – Taiwan, Japan and South Korea.

After many a happy hour doing my research I settled on the 4 Rivers Cycling Route all the way down from Seoul to Busan in South Korea.
It was I considered to be the best option as it did have a dedicated cycling path for just about the whole journey.

I arrived in Seoul on 17th April 2024 with my Brompton bike and returned back to the UK on 14th May 2024.
I biked the whole route over a period of 11 days and spent the rest of the time sightseeing both Busan and Seoul.

For me it was the best cycling holiday by far and I would most certainly recommend it to any cycling enthusiasts out there.
I would suggest going with a partner though as it does get a bit monotonous and lonely in places as there were not many people about along some sections.
I was prepared for that and I am quite happy with my own company. Also, if I had been younger and fitter I would certainly have considered camping, as every single day I was noticing suitable spots for wild (free) camping.
View my entire South Korea 4 Rivers Brompton cycle tour on YouTube

Overall, wonderful enchanting scenery, plenty of places of interest, lovely helpful people, good food choices and for me plenty of time to ponder and reflect on my future years with this peripheral neuropathy.

From the PN point of view, once again I was noticing more intense PN symptoms whilst riding and at the end of the day whilst off the bike.
My feet whilst riding would feel very numb and swollen but of course they weren’t it was just the more intense sensation and feelings but I often found myself stopping to physically check.

My balance when off the bike was also far worse and the walking stick was now invaluable.

Just as the previous year after this bike trip things did improve again, slightly but not back to the ‘old normal’, just a little better.

A new normal, another benchmark.
I now knew, and needed to acknowledge and accept that this would be my last extended cycling holiday!

So slowly and gradually just like the peripheral neuropathy affliction I was carrying there were things being taken away.
I was no longer driving, gave that up a few years prior and now no more cycling holidays, all due to this wretched PN.
Of course the quest continues, just not entirely sure of the final goal though, the posts keep moving.

Just before going away on 1st March 2024 I received my final letter from my Neurology consultant at Exeter hospital from a final clinic visit on 28th February 2024. Once again it was just a copy of the letter sent to my Doctor.

I now had another PN diagnosis:
‘Idiopathic Sensory Motor Axonal Polyneuropathy’

At the time I felt relieved to have this final diagnosis and I went to work researching this ‘gobbledegook‘, it did sound quite special.

Disappointingly, I have since discovered it is now the basic go to off the shelf diagnosis for PN and is quite common.
But at least I now have a special ‘handle’ albeit a shared one.

In the letter the consultant confirmed he would set up for me to visit the local Physiotherapy clinic as I had mentioned that my left foot was sometimes ‘catching’ as I walked. He mentioned this may be ‘drop foot’.

And just like the previous consultant all those years before the last line of the letter read: “I have NOT arranged another appointment for him in the general Neurology Clinic”

In other words, “Bugger off”  you’ve got your diagnosis, what more could you possibly want?

I got my appointment with the Physio Community Neuro Rehab team on the 12th April 2024 just a few days before leaving for South Korea.

It went well, they watched me walk around a bit and decided that my left foot was dropping and that they had in stock and able to fit straight away something called a Bilateral Ankle Foot Orthotics (Boxia Foot Ups) and also now known as ‘Foot Stirrup Thingamabob’s’.

They did help improve my gait pattern and at first also improved my balance and walking, it was quite noticeable, I could now almost jog.
They came as a pair, one for each foot.
They were solely for walking and not cycling.
And once again just like that, the Physio Community Neuro Rehab team  referred me back to my Doctor. That’s that then!

I did take the Thingamabob’s to South Korea with me and I did use them whilst walking on a couple of occasions and they did help but on my return I was noticing after a few weeks of wearing all the benefits they had originally provided were now gone and I found them sometimes to be more of a hinderance and quite uncomfortable.

I stopped using them soon after and have not used them since. My left foot is no longer dropping, I think mainly due to the fact that I consciously make sure I lift it whilst walking.

Summary of my PN symptoms at this stage (up until end of 2024):

• The South Korea bike trip in 2024 did alter my peripheral neuropathy symptoms, mostly everything, the feelings, the sensations became more intense and more regular after this trip.
• I was enjoying the cycling though. Walking with the bike was also a joy, it was a walking aid. All my balance issues go away when riding.
• Now the more frequent loss of balance when out walking was forcing me to start using a walking stick all of the time in 2024. It is now a permanent fixture.
• When I’m walking barefoot across a floor I can sense / feel if the floor is hot or cold.
  That’s a good thing, Right?  – I’d like to find out why!
• Immediate loss of balance when I closed my eyes.
• Often feet felt cold. Cold when going to bed and toasty warm in the morning.
• I started wearing the Bilateral Ankle Foot Orthotics for a few weeks, then stopped.
• Cannot run or jog. Although for a few weeks mid year after wearing the foot stirrups I did nearly jog, once.
• 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.
• Still only 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“
  But when riding and using the bike as a walking aid I could look up and around without too much concern…Brilliant!
• Unaccountable fatigue.
• Stairs and steps had now become more troublesome, especially going down.
• My gait has changed and my stride length is shorter.
• 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 often cycled through 2024, after the South Korea trip only short 10/15 mile local excursions and it’s a great feeling being able to move forward without any balance issues.
  And luckily for me, still no pain.