Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Services for People with Parkinson’s disease in the South Region

Whew! What a long post title – but it’s the official name of the meeting. I know; I have the agenda in front of me.

I was invited along to this meeting held by Parkinson’s UK in Reading, last Wednesday evening. It was part of a larger event (a national board meeting held, this year, in the South region); this was the introductory meeting, to which a number of People with Parkinson’s were invited. I was one of them. I’m aware that I was part of a token presence – it is, after all, impossible to invite everyone – and I suspect that one of the reasons I was invited was to help represent the younger Parkie. But I think we were positive sorts of tokens.

To be honest, it was kind of nice to get out of the house in the evening and focus on being with other adults, although I must confess that, when asked my job title, I said “Mum” (concise and true).  I suspect that my age and appearance may have implied that I may have had a professional, as opposed to personal, interest.

We were treated to a lovely buffet, during which I met some of the charity’s directors and staff, and then we had a series of talks designed to illustrate the current level of services and the imagined future. Inevitable concern was expressed regarding potential NHS cuts – it seems that Parkinson’s, as a long term condition that rarely presents an all-out emergency, may not be top of the NHS’s list of priorities.

Finally, those of us present who suffer from Parkinson’s were asked to relate our experiences with various services received. Naturally, my tale was quickly told – my diagnosis is, after all, quite recent – and was generally satisfactory (with the possible exception of my consultant neglecting to mention the availability of a Parkinson’s Nurse; this was, fortunately, quickly remedied by the physiotherapist whom I requested access to). Most of the services I have made use of thus far involve consultation and education – some of the latter provided by the NHS, some by the charity Parkinson’s UK. It seems to me that there is a willingness for the two groups to work together.

In fact, cohesion of service was one aspect that was identified as in need of improvement. GP’s surgeries, assorted hospital departments, sometimes multiple hospitals, physiotherapists and specialist nurses – all can be involved in managing one person’s Parkinson’s and quality of life. And then, of course, there are the unpaid carers

All in all, it was a positive meeting. It seemed like there was a lot of thought being expended on the future of services in the UK for people with Parkinson’s, and that the will was there to continue improving those services.

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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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Meeting the Parkinson’s Nurse

June 2010

The Parkinson’s nurse ‘phoned to make an appointment with me soon after the physiotherapist’s visit. She, too, does home visits.

I enjoyed her visit. We sat and chatted about various things – not all of them to do with Parkinson’s.  She talked about her job – how she was one of only two Parkinson’s nurses covering the whole of Hampshire – and about NHS funding. I didn’t get the impression that her position was actually being threatened, just that she had been asked to do more when she was already pushed. Hampshire is one of the larger counties in England; here in the north, we are relatively rural (and so more spread out, making the job of a visiting nurse a little trickier), but in the south of the county there are two large cities (Southampton and Portsmouth), and a third, smaller city – Winchester, the county town – is also south of centre.

I felt a bit better about the situation after talking to her. She seemed to think that having Parkinson’s isn’t the worse thing that could happen (it isn’t, of course, not least because there are medicines available to treat many of the symptoms).

A few days after her visit, she ‘phoned to tell me about a drug that she thought would be suitable for me: Rasagiline, brand name Azilect. She suggested that I investigate it further and consider it.

Read ‘The Second Opinion’.


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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’.