Andrew’s PN Journey Timeline
2018 – 2021

2018 – 67 years old

For all of 2018 I was concentrating mainly of adjusting to my various imbalance issues caused by the detached retina and PN. I was becoming far more active and getting plenty of walking exercise with no problems to report. No increase in PN symptoms.

I was also now able to easily differentiate my imbalance issues caused by my peripheral neuropathy and my healing left eye.

I bought an electric bike during the summer which was great as it showed me that I was able to ride a bike even with PN.
Actually, all the balance issues went away whilst riding the bike.
But one thing did crop up, another realisation.
I found that getting on the bike, lifting my leg over in order to straddle the bike and getting off the bike was troublesome for me. I was struggling to lift my leg high enough.
I did not fall over doing this but I realised that this was a problem as there was a risk that sooner rather than later I would probably fall.

So I sold the electric bike at the end of 2018.
During the winter of 2018 and into 2019 I found by chance another possible form of peddle power transport, that might suit my PN condition better, a recumbent trike.

Overall, during 2018 my PN symptoms remained stable. I was adjusting.
Day to Day Living with PN.

2019 – 68 years old

After lots of video watching on YT and research I decided that a tadpole recumbent trike was the way to go. They were being touted widely for rehab use and helping people of all ages and disabilities get back out into nature.

Two wheels at the front and one wheel at the rear and a nice comfy chair in the middle. Human peddle power and there were options to add electric power. This seemed at first to tick all the boxes.

There were problems though, the price of recumbent trikes was very high, to buy new around £4000 for minimum spec and very few available on the second hand market. That price could easily double if electric assist and better spec was applied.

Unable to find a suitable trike at the right price after lots of searching I resigned myself to wait and hope.
I eventually found one in late 2021.
In the meantime I decided a holiday might be a good idea so I booked a 2 week holiday in Madeira.
My walking was OK, my symptoms had not got any worse. I just wanted to prove to myself that things were now OK.

Arriving in Madeira after a four hour or so flight was not particularly good.
I once again after a relatively short flight was finding walking laboured and my ankles had once again swollen, so it was showing me that it was not just long haul flights (10+ hours) that were causing me problems.

It was OK though because after a nights sleep everything was back to normal, or so I thought.

Over the next week or so whilst on this holiday I was noticing several strange things occurring:

I was getting more easily fatigued, I put this down to the hills (very hilly) and the steps in Madeira.
It was becoming obvious to me that stairs and steps were a problem, especially going down. I had not noticed this before. Handrails or the lack of, now became an issue for me.

Slightly more concerning I was starting to feel that my gait was changing and my stride length appeared to be shortening. Once again I put this down to over exertion on the hills.

I also found myself in a town square setting with black and white mosaic floor tiling, this again threw me just like it had a year or so earlier with the supermarket tiles. These type of settings were now a problem that I needed to be aware of as they were for whatever reason causing imbalance.

It was on this holiday that I also noticed for the first time that I was no longer walking with my head up, straight back and looking forward into the near distance, I was now walking head down looking at the path or road just in front of me more often.

I was going for walks and realising after that I had not really seen much, I had not been looking around.
I had been concentrating on my balance and trying to avoid falling over.

I was still not using any walking aids, I didn’t feel the need.

This holiday proved to be invaluable to me in helping me understand the insidious nature of my peripheral neuropathy.
More PN symptoms were indeed creeping up on me without me realising or perhaps once again, my ignorance of not fully understanding just what was going on.
I suppose this holiday became an unplanned, unintentional stress test a couple of years after my initial diagnosis.

2019 closed out with more PN symptoms than ever before, more understanding and slightly more concerns.
I was not going to let this wretched PN beat me.

I decided that more regular exercise was needed so I set myself a target to start in 2020 of walking at least 10,000 steps a day and doing some regular simple floor exercises.
It just seemed to make the most sense to me as all of my questions to Doctors and Consultants as too whether or not I should either increase or decrease exercise were always met with, “just keep doing what you are doing“.
I needed to at least try and make things easier and if more exercise does it or not, at least I’ve tried.
The emotional side of PN.

2020 – 2021 (69/70 years old)

Then COVID came crashing onto the scene and normal living became really weird.

From around March 2020 when the first national lockdown began and people were told to stay at home except for essential reasons until July 2021 when nearly all legal restrictions in England ended (“Freedom Day“) our lives changed.

During most of this time I managed to get my daily 10,000 steps in plus other exercises except during the period March to May 2020 when we were told to stay at home except for essential reasons. I did more floor exercises during this time.

It’s difficult to know if this 16 month period hindered or helped my peripheral neuropathy.
It would be interesting to hear other PN sufferers views on this.

At the end of 2021 I managed to find and buy a very good second-hand recumbent trike. Now the world is my oyster, it means I have absolute freedom, boundless opportunities and the power to go anywhere or do anything I desire without worrying too much whether or not I will fall over whilst using my legs moving forward.

Summary of my PN symptoms at this stage (up until end of 2021):

• 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 tingling and numbness in my feet.
• A feeling of 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.
• A constant reminder everyday on waking that my body was no longer what I had once considered normal.
• But luckily for me, still no pain.

PN symptoms explained.