Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Back in the Saddle

I was planning on writing about how being in a proper routine – a going to work in an office sort of routine – helps me to do that crucial exercising malarkey. On a bicycle, no less. And I will. Continue reading


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More News on Cycling and Parkinson’s

Don’t expect this from me all the time, but this snippet of news comes to you almost hot off the press, being only two days old as I type this.

'Found' Clip Art

So, just how do you fit a basket on drop handlebars?


The Telegraph reports that doctors in the Netherlands (again! – I’d ask what is it about the Netherlands and cycling, but we all know that it’s got at least a little to do with not having any hills worth mentioning; I just wonder why UEA and my own alma mater, the University of Hull, haven’t jumped on the pedal-powered bandwagon) have proposed a ‘test’ for Parkinson’s patients that apparently performs better than expensive medical tests in determining what type of Parkinson’s a patient has.

The new test is a simple query: can you still ride a bike? If the answer is ‘yes’, then the patient is likely to have the standard variant of Parkinson’s. If ‘no’, then it is possible that they have atypical Parkinson’s.

Atypical Parkinson’s is a particularly nasty form of the condition that adds cognitive and memory problems to the motor issues usually associated with Parkinson’s.

I’m very happy to say that I can, indeed, still ride my bike. In fact, I don’t think I’ve ever felt so relieved about being able to cycle.


Can’t Walk? Get on Yer Bike…

Here’s another YouTube video, with footage from the Netherlands of a gentleman who is having extreme difficulty walking, but who can ride a bike without difficulty:

This is footage shot by the chap’s doctor, uploaded in April 2010. There is an accompanying short article in The New England Journal of Medicine.

The person who posted this video felt obliged to say that, in the Netherlands, it is neither legally required nor customary to where a cycle helmet. If you look at the comments on YouTube, you’ll find someone – who evidently hasn’t read this note, nor considered that this is unlikely to have been the first time that the fellow has performed this feat – complaining that, “given his history … they might have put a helmet on him.”

When I first saw this video, I was rather concerned that he would cycle off into the sunset, never to be seen again, unable to stop or steer – but he proves himself perfectly capable of controlling his machine, even dismounting by himself at the end. I do, however, find it a little disconcerting that – from the evidence in the video – it seems as if he has to be placed on the bicycle and given a good push to start. Not very practical, that.

Still, it is suggested by the authors of the article that cycling may prove to be a good form of exercise for patients with advanced Parkinsonian symptoms. Hopefully, it may result in the type of improvements noted by Dr. Alberts.


How Forced Exercise Helps Parkinsonian Symptoms

My physiotherapist has talked – both to me and to a local group of people affected by Parkinson’s – about the research featured in the following ABC news article – but it is strangely reassuring to have stumbled across this ABC News report (posted on YouTube in July 2009):

Basically, the story is that Dr. Jay Alberts, a neuroscientist from Cleveland, Ohio, is a keen cyclist who just happened to go on a long tandem bike ride with his friend, David, who sufers from Parkinson’s. Dr. Alberts was surprised to note that David’s Parkinsonian symptoms were drastically reduced after the arduous ride. On his return, he instigated a study, the results of which encouraged the theory that high levels of exercise affect the brain positively. Most commentators are keen to stress that, while it is the legs that are exercising, the benefits are global – the effects are, for example, also seen in the arms.

I have also found the following textual reports on the same story:

The paper produced by Alberts and his colleagues (“Effects of forced-exercise on motor symptoms and cortical activation in Parkinson’s disease”) was presented in June 2009 at the Movement Disorder Society‘s 13th International Congress of Parkinson’s Disease and Movement Disorders in Paris, France (Abstract LB-13 – find it on page 7 of this collection of Late Breaking Abstracts). There is also a News Release from the Movement Disorder Society, relating to the paper.

Sadly (and slightly suspiciously), I haven’t found any UK reports on this story.


Cycling for Exercise

You might think, given that I enjoy cycling and that I lack Parkinsonian symptoms while doing it, that I’d be using it as my primary aerobic exercise. I may yet, but I have a few curious issues with this idea.

The first is that, as far as I’m concerned, cycling is for getting around. It’s a means to an end, not an end in itself. I had a bike before I had a car, and I used it to go places. I kept the bike after I bought a car, and I used it – when I could – in preference to the car because it was cheaper (a triple whammy of maintenance, fuel and parking charges) and because, crucially, it was decidedly greener. I also liked being outside. The fact that cycling improved my fitness was just a nice side effect.

I’ve never really been bothered about ‘going for a bike ride’. The joy of cycling, for me, comes from the efficiency of a good bike in an appropriate situation. I liked the fact that it was marginally quicker to cycle to work along the A4 at rush hour than it was to drive. I liked being able to whoosh into town at lunch time and not have to worry about parking or causing pollution. I liked being able to move around a city without it taking ages and without waiting for buses.

The second is related to the first in that I feel I have nowhere to ride. I don’t want to ride in circles around the village. The shops are such a short distance away that by the time I’ve dug the bike out of the shed I could have walked there. The nearest towns are 7 miles or more away and I don’t quite feel up to facing that sort of distance, let alone the main roads. I certainly don’t want to risk life and limb on a destinationless ride around twisty country roads where I’m likely to meet some idiot driver going too fast who doesn’t see me until the last minute.

I suppose, really, my issue is a very personal one. I enjoy cycling for what it is, a means of transport, and I don’t want to kill that enjoyment. Even when I had no car, I always had a choice; in bad weather, I did resort to the bus, or I walked. But when the primary object is fitness, buses and walking don’t exactly cut the mustard.

But… my yoga class is (for now) right at the other end of the village. I refuse to drive that sort of distance and it is far enough to make it worth the bother of digging the bike out of the shed. There’s a stonking great hill just before you get there, and I can’t make it up that at the moment (oh, I suppose low mountain bike gears are good for something).

So that’s one bike ride. Once a week (during term time).

I’ve also worked out another. The village got bypassed at some stage and part of the old main road is nice and straight and largely junctionless. From here, I can get to that road, bez up it, slowing down as it gets a bit steeper (but not too steep for the lowest of my 5 gears and my lack of fitness), and then come back along a reasonably wide and straight bit of the new main road. As a bonus, the main road bit is slightly downhill, which means it’ll be a cinch to keep straight and steady. It took me about 20 minutes yesterday. I quite enjoyed it.

I think I’ll go and do it again.

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Cycling with Parkinson’s

Raleigh Magnum

My venerable Raleigh Magnum sports touring bicycle

I hadn’t really ridden a bike for a while when I discovered that I had Parkinson’s. I used to ride quite a lot, though; I cycle commuted a modest distance for several years, and I was quite fond of my bike. I’d stopped cycling when I had children and hadn’t really had the opportunity to get back on the bike properly since.

So getting the bike out after my diagnosis was a bit worrisome. How would my symptoms, mild though they were, affect my cycling? Would I still be able to ride? Would tremors make me wobble? Would my left hand work when I needed to put the rear brake on? Would my balance be affected?

It turns out that I needn’t have worried. Getting back on the bike felt as natural as ever. Oh, there was (prediagnosis) a reluctant relationship with a mountain bike that just plain didn’t work out, but my road bike was still there for me. I still felt the old thrill of freedom, and the Parkinson’s symptoms seemed to disappear in my slipstream. They weren’t completely gone – a little uncertainty remained on gear changes and arm signals – but the basic riding and, thankfully, stopping, seemed unaffected.

Fairly recently, I had a brief online discussion with another Parkinsons patient who was a keen mountain biker. You know the sort of thing – get yourself and your bike to the top of a wooded hill, preferably one with a nice, twisty, muddy track to descend, and career down it as fast as you can without falling off. Completely not my cup of tea, but he enjoyed it. He told me that, for the duration of the ride, he didn’t experience any Parkinson’s symptoms at all.  I believe that his symptoms were more advanced than mine.

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A Lifetime of Avoiding Exercise

Oh, the irony of it. After a lifetime of avoiding exercise for the sake of exercise, I am told that I must exert myself in that direction.

Am I unfit? Probably. Not ridiculously so; I have a perfectly reasonable body shape, I’m not overweight and I’ve never had problems associated with a lack of exercise. It’s just that my philosophy on exercise has always been that it should be useful exercise. So, walking instead of catching the bus or driving a car; cycling where possible; parking just a little bit further away from the shops in order to avoid exorbitant parking fees. Maybe a bit of swimming to remind myself how to do it just in case I fall in the river. Oh, and walking for pleasure. The thing about walking is that you can look around and enjoy what you see; if you’re going much faster you need to be looking out so that you don’t collide with anything.

I was always a bit clumsy. Maybe that’s why I didn’t take to P.E. and Games at school. Tall and just a bit gangly, I never had the coordination to catch a ball, to throw it properly, nor even to run effectively (it was as though these long legs of mine just dragged; I never quite tripped over them, but it was always a possibility). I disliked team sports because, being inherently bad at them, I let down the rest of the team. I also found most sports boring, both to do and (especially) to watch.

I learnt to swim and was lucky enough to learn how to ride a horse. I enjoyed that, mainly because of the interaction between animal and rider. I was even reasonably good at it, but it was expensive and time consuming, so we stopped riding by the time I was 16. I also learnt to ride a bike, but didn’t take to cycling when I was a child because I wasn’t allowed to go anywhere worth going. My parents thought the roads were too dangerous and so I was restricted to the estate, which I could just have easily walked around.

Eventually, I stopped using the admittedly rather dreadful bike I had (it was a shopper style bike, bought for me because it was very adjustable in size; I understand the economy, but deplore the reality). It languished in the garage for a while and eventually got given away.

In the meantime, I walked everywhere. Even at university, I walked. The buses were expensive in Brighton and Hove, and the timetables nigh on incomprehensible (I did use the local rail service to get to the campus, though). Then I moved to Hull (more properly known as Kingston-Upon-Hull; the locals just refer to it as ‘Ull). After 8 or 9 months of walking (the buses were cheaper, but old habits die hard), it occurred to me that, because Hull is very flat and there were no hills worthy of the name, it might be a nice idea to try cycling again.

To cut a long story short, I bought a bike (a second-hand sports tourer) and found that it was a jolly useful thing and that I rather enjoyed cycling.

I moved to Southampton, worked out how to use the friction gears, and carried on cycling. I got a proper job and bought a car because home and work were too far apart, but I still used the bike to go into town (Guildford, at that point) at the weekends because the car parking was very expensive. A new job and another move brought home and work within 5 miles of one another. I jumped gleefully back on my bike (replacing it with a slightly better one) and left my car at home most of the time.

That was probably the fittest I ever was.

I pretty much stopped cycling when my first child was born, and since we’ve moved to a village, there is less reason for me to cycle even when the children are out of the house at school and preschool. It’s barely worth digging the bike out of the shed to go somewhere in the village, and the roads to the nearby towns are much scarier to cycle along than the roads within most towns (think traffic speed and the expectations of drivers seeing bikes).

So now I have to exercise, and I can’t think of any useful ways to do it. Just taking the kids to school / preschool isn’t good enough; I need to do “about an hour” of cardiovascular type exercise to minimise further dopamine losses. I also need to work on my “core strength” and to maintain my flexibility.

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