Andrew’s PN Journey Timeline 2023

72 years old

My Peripheral Neuropathy odyssey continues into 2023.

I did learn a lot about my PN from my recumbent trike trip back in 2022.
But I now had a new Brompton folding bike and so I decided very early on that I would take the Brompton and myself to Singapore and Malaysia! Straight in at the deep end.

I had already been practicing and getting used to riding a bike again during the winter where I discovered that all of my PN balance issues disappeared whilst riding. Such a good feeling. And I could look around.

In fact the most difficult thing for me was keeping my feet well placed on the peddles, they did tend to slip a bit and also on setting off I was finding it difficult to get my following foot to correctly place on the peddle.
Whilst stationary it was easy to get my lead foot in place but once moving and concentrating on the road/path ahead it was my trailing foot placement that was the issue.
But with practice and repetition and a few cuts and bruises on my shins I eventually mastered it without too much damage.

I flew into Singapore on 22nd February 2023 and spent the first few days adjusting to my new environment and managed to get some riding in around Singapore, mainly East Park area and behind the Bay Gardens.
I saw quite a few Segway riders. (image below)
A playlist of the few videos with the Brompton in Singapore

Whilst on the subject of Singapore, lets talk about Changi Airport. Wow!
But that carpet…
 It totally through me off balance. Not sure if it was the PN or my previous detached retina perhaps a bit of both. I did have to stop a couple of times and re-set before setting off on it again.

On day 3 I made my way into Malaysia and cycled up the west coast all the way up to George Town Penang Island.

It was not all plain biking, lots of issues along the way, heavy rain for days, flooding and illness (might have been Covid) along with foolishly loosing my GoPro camera chest harness and handlebar mount (for bicycle filming)
A swollen battery stuck in my GoPro camera that I could not get out. (overheated)
All this resulted in very few videos of my time in Malaysia but other than that everything was great and I am so glad I did it, loved every minute.

From the Peripheral Neuropathy point of view not so good

All the same issues re-occurred, swollen ankles for the first few day owing to the long haul flight (compression socks did not appear to work) more numbness, tightness, the occasional often painful and sometimes ‘bloody’ slip of my foot off the peddle whilst cycing all added to making for an interesting ride.

I returned back to the UK on 20th March 2023.

Once back, this time it took about a week before I can say I was back to near normal PN symptoms (pre trip) again.

I first realised and it really become apparent on my return that I should probably need to now start using a walking stick for balance, not all the time but most certainly taking it when out walking.

Whilst cycling in Malaysia I would often get off the bike (as I thought I would) and walk. I found the bike to be a brilliant walking aid and it did highlight to me just how much this wretched peripheral neuropathy was now affecting my balance and my quality of normal walking life.

To start, mainly for the rest of 2023 I used the walking stick on and off and even when I was taking it out with me I would often only use it for about 30% of the time. This I believed would be the best course of action for me, I was trying to not become totally dependent on it.
Foolishly still hoping for some improvment.

In April 2023 I received a follow up letter from my Neurology registrar showing the results from my nerve conduction studies that I underwent in October 2022.
He did apologise for the long delay…”Whatever”!

The examination had revealed evidence of moderate to severe large fibre sensory motor axonal peripheral neuropathy with very chronic changes, predominantly distally. (More research for me to do)

He also stated he planned to bring me back to his clinic for a face to face follow up soon.

And just like that another year with peripheral neuropathy was over with even more forced changes to my daily life.
The quest continues…just not really sure what the goal is though at the moment!

Here’s a suggestion for PN sufferers – But what happens when it stops?

Summary of my PN symptoms at this stage (up until end of 2023):

• The Singapore – Malaysia bike trip in 2023 did again alter my peripheral neuropathy symptoms, mostly everything, the feelings, the sensations became more intense and more regular after the 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 especially towards the end of 2023.
• Noticed something in late 2023. 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.
• 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.
• 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 am now often cycling and it’s a great feeling being able to move forward without any balance issues.
  And luckily for me, still no pain.