Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Deciding on Medication

When I saw the second consultant, in Southampton, we discussed medication in the terribly real terms of what I should do about it. The NHS seem to have a patient-led policy on Parkinson’s medication; they want the patient to make the ultimate decision on what drug to take. Information is provided, and advice, but the advice often seems to be limited in such a way as to avoid ‘leading’ the patient to a decision. This has the advantage of making sure that the patient is aware of the various options; a more cynical view would have it that it also limits the legal liability of the doctors.

Anyway, I’m all for understanding. I would want to know, regardless. But I did want a little more leading than the consultants were prepared to offer. Fortunately, the Parkinson’s nurse had dropped me a very big hint when she suggested that I investigate Rasagiline (brand name Azilect). That helped me work out which of the Monoamine oxidase inhibitors I should be requesting.

I’d worked out that, at this early stage, a monoamine oxidase inhibitor would be the best idea; they are mild drugs, with few or no serious side effects, and are often prescribed as a monotherapy (sole drug) for people in my specific situation: at the early stages of Young Onset Parkinson’s. I discovered that Rasagiline is a newer drug than it’s classmate, Selegiline, and has fewer side effects.

The consultant agreed with me. He said that that was a good choice, and that I was fortunate enough to live in an area where I was likely to be prescribed it (it costs more than Selegiline, and the NHS subsidises the cost of many drugs with a flat rate prescription fee). He added that it was a very mild drug, “almost a vitamin” (implying that it didn’t do an awful lot of good, but that it wouldn’t do any harm either).

He said it would probably be useful for about a year. This is an alarmingly short period, so I naturally asked him about what might happen later on. And this is when he made a surprising comment. He told me that he had come to believe that the second class of drugs commonly associated with the treatment of Parkinson’s – the Dopamine Agonists -were not worth the risk of prescribing. The risk he was talking about was that of adverse psychological effects (the scary personality changes that can, potentially, turn you into a gambling addict or a nymphomaniac); he told me that these problems were more likely to occur in younger people and that he no longer considered them suitable for Young Onset patients. He said that his change of heart was based on clinical observations.

He told me that his recommendation would be to go straight on to Levadopa when the Rasagaline stops working.

I was quite surprised to hear him express this opinion, because I was under the impression that the risk was low and that the scary side effects had been played up by scaremongers (but despite that, I very much did not like the sound of them). I was pleased that he had told me; it felt almost like a confidence.


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With hindsight…

I’ve already described those early symptoms that caused me to seek medical advice, but there were one or two things that, with hindsight, were also symptomatic of my nascent Parkinson’s.

Fossil Aut-O-Matic watch

The back of my 'Aut-O-Matic' watch, showing the self-winding mechanism.

The most obvious one was my watch.

I have a self-winding watch (also known as an automatic watch). I’ve owned it and worn it daily, on my left wrist (I’m right-handed), since, ooh, around 1996. It behaved itself very well until about 2005, when it ceased to self-wind properly. I took it to be serviced. The following year, annoyed that it was still stopping overnight, and losing time during the day, I took it to be serviced again. I might have taken it to the jeweller’s a third time. At one stage, I gave in and wore an old quartz watch for a while. I even used to deliberately shake my left  arm – vigorously – in order to wind the watch up.

It wasn’t until I was diagnosed with Parkinson’s that I realised what had been happening. The Parkinsonian symptoms have been affecting my left hand side: it was my left thumb that stuck out; it was my left arm that had lost its swing; it was my left hand that had lost its dexterity, and, when the tremors started, they appeared in my left arm and leg.

So it seems evident to me that I had, without realising it, been moving my left arm significantly less than usual. My watch – an analogue device – had detected the problem some 2 or 3 years before I realised that there was anything wrong (3 or 4 before diagnosis).

I now wear my watch on my right wrist. It behaves itself impeccably.

[The apparent malfunction of a self-winding watch as an early indicator of Parkinson’s is not unheard of; in 1990, Cecil Todes published his story (Shadow Over My Brain: A Batle Against Parkinson’s Disease) in which he recounted a similar incident.]

There was another incident that may or may not have been a very early indication of Parkinson’s. This occurred before either of my children were born, while I was still cycling to work. That’s 2003 or earlier – 6 or more years before diagnosis.

It was little more than a casual observation. One night, I realised that my leg felt a bit wrong, as if it needed to be stretched out more. Both legs felt like this, but the left leg more so. It occurred to me then that, between cycling (rather than walking) and sitting at a desk for most of the day, my legs were rarely extended to their full length, and that maybe that was what was wrong. The next morning, I raised my saddle an infinitesimal amount (it was already close to being as high as was sensible; I was fully aware of the lever advantage of a long leg). I’m not sure if the change in saddle height made a difference; it was a minor niggle that was only noticeable when I was trying to sleep.

It was around this time, too, that I observed that my left foot was always colder than my right (my feet have always been cool, but now there was an imbalance,which I hadn’t noticed before).

I actually asked my consultant about this imbalance (I didn’t say when I’d noticed it); he said that it was a result of my using my left leg less than my right. Which I may be naturally inclined to do, being right-handed (and right-footed).

My husband made an observation about my handedness some time ago. He thought I was exceptionally biased towards my right hand. Now, it could be that he is more ambidextrous than many, or it could be that I was, even then, losing full control over my left hand. Or it could just be that I had concentrated on activities that only required one hand (drawing, writing, even playing badminton). Who knows?

I’m convinced about the watch thing being related. I’m not so sure about the others.

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The Second Opinion

July 2010

The appointment in Southampton took several months to be scheduled. I was eventually assigned a slot at 9am in July, towards the end of the school term. Southampton is a good 50 miles away, and at that time in the morning I was likely to be battling with rush hour traffic.

I accepted the appointment. It could take ages to get another one.

My husband took the day off work so that he could get our son to school and look after our daughter, who didn’t have  a preschool session that day. I decided that it would be nice to make a day of it; I had lived in Southampton for two years when I was younger and knew the city tolerably well (although I didn’t know where the hospitals were, never having had cause to visit them before). It is, in my opinion, a very nice city. There’s the remnants of the mediaeval walls to walk around, a lovely art gallery, plenty of parks and, of course, the common – a fantastic open space just on the edge of the city centre. There are a lot of shops, too, but I didn’t have anything much I wanted to buy.

So, off I went. I found the hospital, navigated its labyrinthine corridors to find the neurology department, and saw the senior consultant. Needless to say, he agreed with his colleague. We discussed medication (which I will talk about in another post) and also had an interesting talk about the speed of progression. There is an average rate of progress – which I appear to be following – but some people with Parkinson’s progress faster or slower. I was particularly interested in any factors which might assist a slower progression. I asked if there had been any research into lifestyles and rate of progression; neither the consultant nor his assistant nurse seemed to think that there had been. “Maybe,” the nurse suggested, “You could research it. I’m sure you’d be capable.” Well, I probably would be. I have a background in science – but not in medical science. I wonder how serious she was? The consultant made a few noises that sounded like agreement.

I wonder how to go about research of that kind? Surely I would need to be associated with some academic body in order for my research to be acknowledged, to be taken seriously and, most importantly, for the research to be disseminated properly. There wouldn’t be any point doing the research if nobody knew about it, would there?

Anyway, I was done at the hospital by 10am. I then had a lovely day revisiting old haunts in Southampton.

Read ‘Deciding on Medication’.

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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’.

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What the Consultant Said

October 2009 – March 2010

I went to Basingstoke to see the consultant. He got me to do stuff like wriggling my fingers, walking in a straight line and so on. He said, “What I’m about to tell you may come as something of a shock… I think that you have Parkinson’s.” He said that he was pretty certain of it, but that of course there were a few tests that could be done to see if it was something else instead.

I wanted it to be something else, I really did. Something that could be fixed.

There aren’t any tests for Parkinson’s per se, or, at least, there aren’t any that my consultant thought were worth doing.

I had blood tests and an MRI scan of the brain. I had to go to Basingstoke for both; one of the blood tests measured the amount of copper in my system and it needed processing soon after being taken (excess copper would be an indicator of Wilson’s Disease). The MRI scan was a curious experience. The scanner takes the form of a narrow tunnel into which the patient is slid. It is claustrophobic and noisy, and you have to stay very, very still. They provide headphones with music so that the noise isn’t too intrusive. My music was a radio station with a few too many talky bits. Towards the end of the scan, I shifted my legs and that made my head move, so the radiologist had to redo one of the tests.

After all of the test results were in (I was sent copies; they indicated that there was nothing wong with me, which probably meant that I had Parkinson’s), I was due to see the consultant again. My appointment was in January this year (2010). Unfortunately, it coincided with an exceptionally large amount of snow; the last time it had snowed a lot (in December 2010), Basingstoke had basically stopped. People had been stranded. I didn’t fancy the drive, and I didn’t fancy getting stranded in Basingstoke. But the real clincher came when the school and preschool closed; I did not want to attend the appointment with a 6 year old and a 3 year old in tow. It wouldn’t be fair on them (they’d get bored) and it wouldn’t be fair on me (I wouldn’t be able to concentrate).

I got the appointment rescheduled; then I realised that the new appointment coincided with half term, so I rescheduled it again.

It was March before I got to see the consultant again. He didn’t have any surprises for me. He told me that he was confident that I had Parkinson’s, but I was more than welcome to seek a second opinion from his colleague in Southampton. In fact, he encouraged the idea of a second opinion.

In the meantime, he set up an appointment for me to see a physiotherapist.

Read ‘Meeting the Physiotherapist’.

Read ‘The Second Opinion’.

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First Symptoms

Summer 2008 – Autumn 2009

I began to be concerned when I noticed a certain tenseness in my left arm. My thumb would stick out without me telling it to, and I found that the natural swing had gone.

This was late summer in 2008. My son, then four and a half, started school that September. My daughter had just turned two. I hadn’t, truth be told, been enjoying being a mother very much. My daughter was a poor sleeper, which naturally affected my sleep, and it was suggested at the time that I had post-natal depression to a minor degree. I had no job; my last short term contract had finished, and the economic climate suggested that there would be very few interesting part-time opportunities.

I went to see the doctor about my arm. He checked the possibility of a stroke (not an idea that had occurred to me) but didn’t suggest anything else. I proffered my theory: could it be that I had done something to the muscles by persistently carrying my children on my left side? He seemed to think it was possible and sent me on my way with the suggestion that I do some exercise that used both sides equally, “like yoga, or swimming”.

A year went by. I didn’t do much yoga (although I bought some books and DVDs) or swimming. I’m not very good at scheduling my private life, and I’m even worse at doing exercise for the sake of it. Having small children around didn’t really help, either.

I began to notice that the tenseness had spread to my left leg.

So I went back to the doctor’s. As it happened, I saw a different doctor this time, and she referred me to a neurologist.

Read ‘What the Consultant Said’