Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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High-powered MRI may provide Test for Parkinson’s

One of the peculiarities of Parkinson’s Disease is that there is no definitive test for it. To be sure, you get a battery of tests on the NHS, but they (blood tests and an “ordinary” MRI scan) are all to check for alternative diagnoses, not to see if you actually do have Parkinson’s. There is a scan which makes use of a radioactive chemical called Ioflupane (123I), or DaTSCAN – this makes dopamine transmitters visible to a gamma camera, and so should allow levels of dopamine to be registered. However, it is not a conclusive test and is often considered too expensive. When I asked my consultant about it, he was quite dismissive (whether because it was unlikely to work in my case or because of the cost, I am not sure).

Only yesterday, I came across an article that suggested that many cases of Parkinson’s were misdiagnosed.  It seems to have been news in 2006. Which is quite a long time ago; the implication in the article is that GPs (family doctors) lacked experience with Parkinson’s and that a specialist should make the diagnosis (they do this by knowing what to look for – it’s quite vague but experience, it seems, helps a lot).

Anyway. Back to the matter referred to in the title. A research institute in Canada has a 7 Tesla MRI machine – exceptionally strong for a medical design (standard medical MRIs are around 1.5 Tesla) – which allows them to get a particularly high-definition scan of the brain. Apparently, it is possible to see the difference between a Parkinsonian brain and a normal one using this equipment. 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.


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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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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’