Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Relaxation via Visualisation: an anecdote

Relaxation techniques can be very useful to people with Parkinson’s. It makes sense: if your muscles tense up involuntarily, it should be possible to relax them deliberately and to attempt to stop it happening too often.

On Friday, I attended a class organised by my enterprising physiotherapist, one of a series designed for people with a recent diagnosis of Parkinson’s. The attendees are, naturally, a mixed bunch, but I am, at 40, the youngest there; I think I may also be the closest to the beginning of my Parkinson’s journey. I was feeling a bit tentative this week, because my overall fitness has been impaired by a chest infection that I’m still getting over. I’d managed, earlier, to participate in my yoga class that falls, coincidentally, just before the physio class (it’s a bit tight getting from one to the other, but it just about works). I thought I might have to sit out anything too energetic, but, fortunately, this week’s theme was relaxation.

We went through  few techniques familiar to me from my yoga classes, notably breathing and body awareness. We were encouraged to adopt the position known, in yoga, as the corpse pose (Savasana). This is a very simple pose, being essentially lying flat on your back on the floor with your arms and legs flopped out, palms up (if possible – my left wrist is stiff but I can just about make it turn enough). This pose is particularly advantageous because it also helps promote good posture – something else that becomes an issue when you have Parkinson’s.

Line drawing (made without a model) of the "corpse" relaxation pose. (C) Zalamanda

And then we tried a visualisation exercise, which entails imagining yourself in a relaxing place.

One of the most common relaxing places seems to be the beach. Off we went. A relaxation CD was playing pleasing wave noises. We were encouraged to think of lying on the beach, the waves lapping at the shore.

I think my imagination is a bit overactive.

Anyway, I started worrying about suntan lotion and wondering where my book was. Then palm trees got mentioned and suddenly we weren’t in Cornwall anymore. I decided it was too hot for me (and that I’d get sunburnt soon) and zoned out of the visualisation (by this time, some annoying synthesiser music had appeared alongside the waves on the CD, so I tried to block that out, too) and just concentrated on breathing and body awareness (which included tensing and relaxing groups of muscles).

I’m not saying that visualisation doesn’t work for me. I think I could build my own, and have fun doing it (at the moment, I’m favouring a moorland scene with a stream burbling nearby). Probably my biggest problem was that I’m not much of  beach person – or rather, that I’m not a sun worshipper. I like to walk along beaches, to build sandcastles with the kids and maybe read a book if I’m feeling lazy, but I’ve never been one for sunbathing.

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Interestingly, in the preceding yoga class, we’d done a similar exercise albeit without the visualisation. The doors were open and we could hear the birds singing outside… lovely. Then a Chinook came over – but, somehow, it didn’t quite spoil it for me. The birds were still singing after the helicopter had gone.


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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.


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The Beginnings of an Exercise Plan

So, anyway. Exercise. I’ve just spent a fair bit of sitting down time telling you why I don’t like exercise (yup, that’s right – I was decidedly not doing any exercise). Why must I do it?

  • Flexibility: Parkinson’s patients often lose flexibility through lack of use. In particular, I’m told that I should be aware of the flexibility in my back; I should maintain the ability to twist and bend my torso.
  • Core Strength: This is strength in the torso. Building up core strength improves stability and helps counteract the muscular rigidity that Parkinson’s can induce. I’m not sure if the shoulders are necessarily included within the ‘core’ area, but my physiotherapist encouraged me to work my shoulders to keep my arms functioning.
  • Aerobic or Cardiovascular Exercise: ‘Big’ exercise that improves the strength of the heart and lungs. This sort of exercise is activity involving the large muscles, such as the legs, and has lots of health benefits such as lowering blood pressure. It also burns lots of calories. And, it turns out, it helps prevent further loss of dopamine functionality in the brain, as my physiotherapist told me recently.
    (See also my post on a report of the research.)

My physiotherapist suggested a range of aerobic exercises, including using a trampette, skipping, dancing, swimming and cycling. Running would be included, too, but I can’t recall if we discussed it. Certainly, on the occasions that I have tried running for fitness purposes in the past I have found it very hard on my lower legs (not to mention very tedious).

The problem, of course, is fitting these things in with my lifestyle. I may not be working at the moment, but my day is restricted by the necessity of taking children to school and collecting them, and by a number of other commitments (all of which come before housework, naturally, but that still – alas – needs doing, too). My village location means that swimming involves a drive of around 10 miles on top of the usual faffing around. I have reservations about cycling purely for exercise, too – although these are complicated and I will probably cover them in a later post.

I’ve bought myself a trampette (I was very pleased to find one in a sale with free postage) and an adult sized skipping rope. I’m already enrolled on a yoga course – in the village, which is brilliant both for its location and because I rather enjoy it. I’m not, however, very good at doing yoga out of the class.

The trampette is quite fun – good for exhausting myself quickly. Of course, when the kids are around, I don’t get much of a chance to use it, because if it’s out, they want to bounce on it! Skipping is actually quite tricky. I never was much good at it. Of course, it has to be done outside, because our ceilings aren’t very high. I haven’t practised much, but today I managed three whole consecutive skips before fumbling it. It might help now that I’ve adjusted the rope length:

To find the optimal length for a skipping rope:

Stand on the centre of the rope and raise the handles until the rope is tight. The handles should be level with the centre of your chest.

I’ve also tried to make the trips to and fro school more fitness friendly. Where possible, I try to ensure that I’m not carrying anything extra so that I can run part of the way when it’s just me, no kids. I’ve even dug my (cheap, old) running shoes out. The kids have got scooters and they are very good about carrying bags on the handlebars, so they whizz off on their scooters and I run to catch up. Some days, I’m able to leave both scooters in the preschool buggy park, so I can run home unencumbered. I’m not up to running all the way yet. It’s not far, mind. Maybe I can work up to it.

I’m also managing to do at least 3 x 10 lifts a day with my hand weights, more if I get the chance. I like these. They don’t take up much space (neither to store nor to practise) and they don’t take up much time. I can also use the ‘rest’ period between each set of 3 lifts to read a few paragraphs of my current book… (maybe I overdo the rest bit. Sometimes I need to read a bit more than a few paragraphs). It also feels like they are doing something. I’m most concerned, right now, about my arms, and the lifting is meant to work my shoulders; the benefits should effectively spread downwards. Maybe it won’t improve the dexterity of my fingers, but hopefully it’ll help that weak wrist. I gather that keeping my shoulders strong helps me to combat that rigidity issue.

I really ought to work at the exercises the physiotherapist gave me more. She gave me loads, which I found a bit confusing. The weights were on the first page – the most advanced of a series, and I was pleased to be able to do them, and, indeed, to graduate up to 3 x 15 repetitions of the first weight (1kg) and then on to 3 x 10 of the next weight (1.5kg). The other stuff she gave me includes a lot of bends and twists. Some of it is also covered by yoga.

I’ll write more about yoga another time.


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Temporary Tremor Control

I have the possibility of a job interview coming up (that’s all it is: a possibility). Thing is, last time I had a job interview – it was before my diagnosis was confirmed, and also before medication – I couldn’t stop my leg shaking and it looked as if I was completely and utterly terrified. (I was a bit nervous, but no more than you might expect for a job interview.) It was one of those ‘relaxed’ interviews, on comfy chairs set around a coffee table, so the wobbly knee was definitely on display. I’d been able to control my left arm by holding it with the right, but the leg had eluded me.

After I was rejected, I ‘phoned up for feedback and one of the reasons they gave me was that I seemed to be too nervous and that they didn’t think I’d be up to the (limited) customer interaction involved in the role.

So, anyway, that was the last one. What can I possibly do about the next one, if it happens? I don’t want a repeat – even though it’s a different type of role, and is, in fact, likely to have nothing whatsoever to do with customers, I still don’t want to shake uncontrollably during the interview.

I could tell the interviewers, of course – and that is an option I’m considering, but only if necessary. This is for a temporary role – a 3 month contract – and I went so far as to ask the employment agent (with whom I have a good working relationship) for advice. This meant confiding in her, of course. She seemed fairly unphased, and asked the important question: would it affect my work? It’s a desk job, using computers. No, I said. Well, she told me, I don’t think you should mention it, not for a short-term contract.

So, when I saw my physiotherapist on Monday, I asked her if she had any advice. She had two suggestions:

  • Pressure: applying pressure to the affected limb may hide or prevent the tremor.
  • Relaxation: using yoga techniques (breathing, stretches) may also help.

I shall have to try out methods that might work in an interview situation. It may even be that something as simple as crossing my right leg over the left might do the trick…

When I thought about it, I realised that I already use the pressure idea at night. I often find that my left arm – particularly the hand – shakes when I’m in bed trying to go to sleep. So I lay on my left hand side with my left arm behind me, as straight as I can make it. It’s not very comfortable, but it does seem to work. It squashes my shoulder and I suppose it may also be a sort of passive stretch. After a while, the tremor subsides and I roll over to sleep on my other side.


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The Benefits of Cardiovascular Exercise

My physiotherapist came to see me on Monday. She was fresh from the World Parkinson’s Congress (WPC) and was quite  full of the news that cardiovascular exercise (also known as aerobic exercise) had been shown to help prevent the loss of dopamine functionality in the brain. Unfortunately, I can’t find an online reference to this; I’d like to follow it up and inspect the evidence for myself.

However, it sounds like good news. The only side effects of exercise (within reasonable bounds) are good ones, like overall improvements in fitness.

So it looks like I need to get stuck into finding an exercise regime that suits me. Not just a few weights and stretches, but the sweaty sort of stuff. The difficulty will be making it part of my routine…

See also ‘How Forced Exercise Helps Parkinsonian Symptoms‘ for an official news story on this subject.


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Meeting the Physiotherapist

May 2010

Around here, physiotherapists visit you in your own home. I duly arranged an appointment for when the kids would be at school / preschool, only for them both to be off with impetigo (a harmless but contagious rash). The physiotherapist didn’t seem to mind, and in the event the children both behaved themselves pretty well – it helped that the television was on.

When I made the appointment, there was some doubt (on the pysiotherapist’s part) as to whether or not I was truly in her area. We are in a village close to the Hampshire/Berkshire county boundary, and have a Berkshire postal address. However, despite that, we are definitely in Hampshire, and are certainly covered by the Hampshire NHS trust. Once that had been sorted out, we were okay.

The physiotherapist gave me a few pointers on what I should be aware of: keeping my shoulders strong was, I think, the main one. I have to beware of allowing myself to sag forwards. I need to keep the flexibility in my back – bending, and especially twisting – at the moment, I don’t have a problem there. She also said that there wasn’t a lot she could do to help at the moment. As this is because my symptoms are mild, it is, actually, good.

We talked about the idea of me doing yoga. She said that it was a good idea, and that I would be fine in a normal class; I didn’t even need to tell the teacher of my condition if I didn’t want to. (I couldn’t see any reason not to inform the teacher, though.)

The physiotherapist spotted a problem that I suppose I had been unconsciously ignoring. My left foot (always the left side!) was rolling out and affecting my stance and gait. It was uncomfortable, now that she mentioned it. She suggested that I ask for a referral to orthotics (for a moulded insole to correct this problem). As this seems to be a new problem, and it is on the left hand side, I think it must be related to the Parkinson’s. The physiotherapist wouldn’t, of course, say one way or the other.

Before she left, the physiotherapist asked if I’d seen the Parkinson’s nurse yet. No, I hadn’t. I wasn’t even aware that there were specialist nurses for Parkinson’s. (It seems to have been an oversight on the part of the consultant, as I should have been referred to her.)

As the physiotherapist shares an office with the Parkinson’s nurse, she said that she would set that up. She also promised to send some exercise sheets in the post.

Read ‘Meeting the Parkinson’s Nurse’.