Ropinirole Diary with Lighthouse

I’m pretty certain that the ropinirole is making a difference at 6 mg, but it’s not quite enough…

Here’s how it is. I seem to be better able to cope with laces, buttons and zips, so my dexterity is better than it has been. I’m not feeling tired (except when I stay up until two in the morning fiddling with Word documents), I’m not experiencing any obsessive-compulsive problems (well, no more than usual), and I mostly feel pretty good. Apart from my left foot, that is, the toes of which is still curling up with what is most likely to be dystonia.

It’s not just that running hurts; the tops of my toes are rubbing against my shoes, and the muscles ache. I saw a video of myself ambling along a beach on New Year’s Day, and I was limping. I didn’t realise that I limped. You can’t blame the beach – it was hard, wet, sand, easy to walk on. I wasn’t striding along, like I often do (I suspect that there is less of a limp then), but wielding my lovely new-for-Christmas camera, looking for a good shot of the lighthouse. It was a bit of a grey day, but I still think that the results were fairly effective.

Anyway, once Christmas was out of the way and everybody had (mostly) settled into their old routines, I had a good think about this, consulted with my Parkinson’s Nurse, and had a conversation with my GP over the telephone.

So, tomorrow, I’ll start doubling up my 4 mg tablets (giving a total of 8 mg) and see how that goes. I hope to bring you news of the results within a couple of weeks!

High Heels and Dystonia

These be the shoes...

I don’t often wear high-heeled shoes, but I had occasion to do so yesterday, when I had a job interview. I also had a good wander around Andover, where the interview was.

I decided not to wear the orthotic insoles. They don’t actually seem to help very much, and in some shoes they make my feet ache more than they would without the insoles. I gave my interview shoes (block-heeled lace-ups which go nicely with a trouser suit) a spit and polish and off I went. By the end of the day (not-very-stressful interview and a couple of hours of fairly purposeful town-walking), my feet were fine. I realised that I had scarcely been bothered by the dystonia at all.

The only problem with heels is that I haven’t mastered the art of running in them.

Podiatric Solutions for Dystonic Feet

Today, I went back to see the podiatrist to ask her about the dystonic toe-curling that I have been experiencing.

I took with me copies of the two Parkinson’s UK information sheets that I mentioned before (dystonia and feet). She seemed to find them quite interesting; in fact, she asked if she could keep them. Of course, I said yes (I’d printed them specifically for the appointment).

However, she didn’t prescribe a toe prop or a toe splint. These devices are both made of silicon and are used to support or straighten the toes.  My podiatrist told me that she was reluctant to give me either of these, as I am still relatively young and fit, and she wanted to try to correct my problem rather than just ease it (but she’s reserving toe props for a second attempt).

Orthotic insoles with metatarsal dome

Instead, she gave me a pair of 3/4 length insoles with a metatarsal dome. This dome, which sits just behind the ball of my foot, is intended to encourage my toes to spread out. It feels very strange. I’m to wear them (both feet) for short periods initially, and build up the time I’m using them until I’m wearing them pretty much all day.

The peculiar land of Dystonia

Dystonia sounds like the name of a curious little East European country, doesn’t it? A bit like Elbonia in the Dilbert comic strips.

Or maybe it’s a fancy name for a hearing malfunction (as it happens, I am a little bit tone-deaf. Probably).

Sadly, neither of these is true.

Dystonia is:

“a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.”

(Oxford Dictionaries online)

Dystonia is a serious condition. It can occur as a symptom of another condition (such as Parkinson’s), in which case it is known as secondary dystonia, or as a neurological problem in its own right (primary dystonia). The Dystonia Society (UK) have a great deal of information on the subject.

Parkinson’s UK have an information sheet on dystonia, from which I learnt that it is more common amongst Young Onset Parkinson’s patients, that it usually occurs on the side of the body that other Parkinson’s symptoms are most pronounced, and that “in people with Parkinson’s it is most commonly seen in the feet”. Apparently, “spasms in the calf muscles can cause the toes to curl into a claw-like position”.

Which sounds familiar.

My interest in dystonia was prompted by a short discussion I had with my Parkinson’s nurse at a local Parkinson’s UK seminar in which she was discussing medication. I can’t quite remember why, but I mentioned my recent problem with toe curling and she said that it sounded like dystonia, and suggested that I look it up.

I think she’s right: it does seem an awful lot like dystonia.

She also said that it may be an indication that I am undermedicated. Of course, I can’t increase my dose of Rasagiline, so this means considering the next stage of medication – dopamine agonists or levadopa. That’s a decision that I freely admit to have been dreading.

However, I am due to see the podiatrist again next week, so I will see what she has to say on the subject. My physiotherapist talked about an orthotic device used to spread the toes, and a Parkinson’s UK information sheet on feet refers to a silicon “toe splint” or “toe prop” to remedy problems of this type. It certainly feels as if something like that might help.

At the moment, I’m putting weight on the tips of my toes that really didn’t ought to be there – especially uncomfortable when running – and my shoes are starting to rub. I discovered recently that the unnatural curl in my toes is uncomfortable during a long drive (I seem to use my toes to depress the clutch pedal). The constant muscular tension in the outer-underside of my foot causes an ache, too.

Read about the next visit to the podiatrist.

Read about high-heeled shoes and dystonia.