The Story So Far... part 1

The mystery of the gammy foot

Welcome to Tremor-rific Tales, the section of my blog dedicated to discussing my life after being diagnosed with young-onset Parkinson’s Disease. You can read a brief intro in my last post here. If you are nice enough to subscribe to my site, you can choose to opt in or out of receiving these posts as you prefer. I’ll continue to blog as normal under the main Ruth4Truth banner, and Parkinson’s posts will be found in the subsection Tremor-rific Tales. There will inevitably be some crossover, after all I’ll continue to live my life as normal(ish) with Parkinson’s and I’ll have Parkinson’s for the rest of my life.

So, the story so far…

In 2019, just before my 40th birthday, pretty much on a whim, I decided to participate in the KiltWalk, a 23-mile charity fundraiser walk. I saw a call out from the National Deaf Children’s Society, who I’d been volunteering with for a few years, for people to walk on their behalf. I enjoyed walking and thought it might be a fun and worthwhile thing to do. In the run up to the April event, I took myself out on some practice walks, a little longer than my usual long walks. During these practices, my left foot would sometimes sort of cramp up, not painfully, but the toes would tighten and curl in, then the whole foot would start to turn onto the outside edge.

(If you know me and I’ve told you part of this story before, I may have said it was my right foot. I promise I’m telling the truth, I just genuinely have trouble telling left from right, always have done. My driving test was a fiasco.)

I put it down to overuse, some issues were bound to be expected with this kind of undertaking so I didn’t think too much of it. The actual KiltWalk went well, the cramping/rolling happening towards the end but not so much that it stopped me completing the distance.

Once the blisters had healed and my legs had recovered, I resumed my normal regular walking. Unfortunately any time that I walked for more than 15-20 minutes or so, the cramping/toe curling/rolling returned. Additionally, I experienced occasional pain in my right heel when I stood up or started walking, but it would fade after a while. After giving it several months to sort itself out and seeing no improvement, in December 2019 I contacted my GP who told me I could self-refer to the local Podiatry clinic.

The podiatrist I saw in February 2020 quickly diagnosed plantar fasciitis in the right foot but was stumped by the weird stuff going on with the left. She sent me away with a series of exercises for the plantar fasciitis and her hopes and best wishes that these would also sort out the other issues too.

They did not. The heel pain in the right did gradually subside, but the tiresome cramping, curling and turning in the left continued. I couldn’t walk more than 20 minutes without problems starting and we were now in Covid-19 pandemic lockdown time, so walking was all we could do. When I was out for our daily allowance of fresh air and exercise with the kids, I had to keep stopping to stretch and shake it out, before hobbling back home. It became known as my gammy foot and was a real drag, literally and figuratively.

I tried resting, using it less to see if it needed recovery time. That didn’t help. I tried using it more, to see if it needed strengthening. That didn’t help. I got back in touch with my GP and this time requested a referral to a physiotherapist, suspecting the podiatrist had done all they could and the problem might not lie solely in the foot.

In late 2020/early 2021 I got an appointment through for physio. A phone appointment. It’s pretty difficult to explain to someone over the phone how your foot goes wonky. Once again they didn’t really know what could be causing it but I was given a set of exercises to do between appointments. I think I had at least 2 or 3 phone appointments until I eventually got in to see the actual physiotherapist in the actual hospital in June 2021. Every 3 months I went back. Each appointment offered no answers, just different exercises. I diligently did the exercises, despite seeing no improvement, but every day I would sit doing heel lifts and toe lifts and stand on the edge of the stairs raising and lowering myself and trying not to fall down.

I noticed that sometimes while doing the exercises, my left leg would start to shake. I figured I was either doing the exercises too much, or wrongly. I mentioned it to the physio at an appointment in December 2021, she suggested I go and see a different physiotherapist at a different clinic. After a year of getting nowhere with her, I agreed that it was worth a try.

In the meantime I stopped doing the exercises but my foot problems persisted and my leg continued to shake now and again, particularly if I was sitting trying to do something else, like typing on my laptop or even clipping my fingernails. If any other muscles were being used, my leg seemed to want in on the action and shook in solidarity. I also thought I began to notice changes with my left hand/arm. When I towel dried my hair, my right hand was doing most of the work and my left hand didn’t really move. If I got some hair or fluff on my left hand I struggled to get it off, the fingers didn’t move the way I wanted them to. When I played the drums my left strokes were weaker and less controlled. These changes were subtle and I wasn’t sure if I was imagining it. They could be explained by getting older, or lack of practice, or just that I am right-handed and it was just normal differences in my less dominant side.

In January 2022 I went off to see this new physio, not really sure why or how this one would be any different from the first one. He took a whole different approach. I was asked a load of questions, not just about my foot but about my background, work, family history, other health issues, and general activity levels and fitness. He put me through a series of tests looking at my feet, legs, hands and arms as well as my walking, running and balance. He concluded that there was definitely something going on, that there were differences between my right and left sides, greater than would be expected from simple right-side dominance, but that these were unlikely to be musculoskeletal issues. He suspected they were nerve issues and recommended a referral to neurology.

In January 2022 I went back to see my GP with an update and to confirm the neurology referral. He repeated some of the same tests and agreed to proceed, however he also did a more general check-up and decided that I needed blood tests, had detected involuntary eye movements and a heart murmur, so rather ridiculously I ended up with referrals not only to neurology but also to cardiology, the optician and bloods. I wouldn’t have been surprised if he’d said I was pregnant and also needed a prostate check.

Thankfully within a couple of months the bloods had come back clear, the optician (optometrist? ophthalmologist?) said they couldn’t detect anything and cardiology said nothing was amiss.

All I had to do now was wait for the neurology appointment…