The Symptoms so far...

Bunions, tiny writing and exploding heads.

So far I’ve written about the early signs I noticed and the initial investigations into the causes, and the further tests and scans I had that led to my eventual diagnosis.

I still experience the foot cramping/curling thing, which I now know is called “dystonia” and is a common feature of Parkinson’s. Interestingly, it happens less when I’m walking the dog. By myself, I'm a bit of a power walker, moving as quickly as my little legs will carry me. A dog stops and starts and sniffs and isn’t usually in a hurry.  I find that I can walk a lot further with the dog without too many difficulties.

I started experiencing more tremors, as I more accurately began to call them, in my left leg and arm. This is perhaps the symptom most associated with the condition. Interestingly, only 1 tends to go at a time, either the leg or the arm/hand. It mainly occurs when not doing anything else and can be overcome by making some purposeful movement, but annoyingly does happen when holding a book or my phone. I sometimes have to explain to people that I’m not shaking with nerves or shivering with the cold, although actually both stress and cold can make it worse.

A more irritating symptom is the stiffness and tensing of my muscles. Again, it only affects my left side so far, but my foot, leg, arm and/or hand will just stiffen and tense, both when I’m at rest and when I’m trying to do things. I have less function in my left hand, using it feels like the fingers are pulling against elastic bands, or moving through thick treacle. Around February I started to get stiffness my left hip, which turned to pain which has been ongoing ever since. The stiffness and tension means I find it difficult to get comfy when sitting down or lying in bed. My sleep is affected. I’m in discomfort about 80% of the time, day or night and outright pain about 50%. It takes me a while to get going when I get up.

A couple of years ago I noticed my left big toe was veering out towards the smaller toes. At the time, I didn't connect the dots, but the consultant neurologist did say that it could be linked as my foot and leg muscles are continuously contracting and stiffening, pulling the toe sideways. So I now have a very attractive bunion on my left foot. I know it's not been caused by wearing high heels or pointy-toed shoes, I've never worn those in my life. I live in trainers and walking shoes. To be honest, this has caused me the most difficulty of everything. It can be extremely painful to walk on and come on with no warning.  I've had to buy wide fitting shoes to accommodate my wonky toe.

(There are no good gifs about bunions)

Back when I first got referred to neurology, I did what any normal person would do and googled a list of neurological conditions. Among them was something intriguingly called “Exploding Head Syndrome”. I clicked to read about what these poor unfortunate people were going through, only to discover that I experienced this too! It’s the sensation of hearing a loud noise that isn’t actually there, usually when falling asleep. I get that! It’s usually a bang, but since getting a dog it’s sometimes a loud bark. I know they’re not real but they still wake me up. I can’t find anything specific linking this to Parkinson’s so it could just be a co-incidence. Thanks, brain.

The most bizarre symptom so far is that sometimes my handwriting is very very small. I rarely write anything by hand these days, and I recently had to start wearing reading glasses, so when I tried to write and it came out teeny I figured it was just something to do with that. But no, it’s a Parkinson’s thing!

All symptoms get worse when I’m tired, ill and during my period (because of course). I’m not on any medication yet, but will definitely be discussing options at my next appointment and hopefully I’ll see some improvement and not too many weird side-effects…