Tremr

I'm in a bit of a spot. I've run out of the medication that manages my Parkinson's symptoms and it seems there is little prospect of getting more for at least four days. When I was first diagnosed, the disease was mild enough for medication to mask many of the symptoms so effectively that some people didn't seem to notice. People with Parkinson's are described as being 'on' when they have taken their medication and that medication is active in their system. As the disease progresses, that 'on' period shrinks and we have to take our meds more frequently. Ten years on from that diagnosis I think most people that I encounter realise that something is not quite right even when I'm 'on'. The drugs effectively top up the dopamine that is lost as a result of Parkinson's so that my brain can continue to regulate what my body is doing. The difference between being off and on feels a bit like the difference b...

"How are you doing? Lovely day isn't it?" I had been lost in a storm of competing questions not including the state of weather when I encountered this friend in the corridor. Sunshine apart, this was turning out to be well down the list of my favourite days. "Yes, it's nice isn't it?" I said. Back in the office another friend asked how my appointment had gone. "I've got Parkinson's". "No, you haven't". From an early age we learn to look on the bright side and reassure each other that everything is going to be alright. We are less prepared for the occasions where a situation is not going to improve but we all need to have those conversations at various points in our lives. I had the conversation with my family that evening and I was touched by their love and support. We talked about the pros and cons of letting work know. British law tries to protect the disabled from workplace discrimination for examp...

My neurologist is a very nice man. He listens well and is faultlessly polite. It is the sort of job where compassion and good observation are called for and he has both in abundance. I think we get on pretty well. At each appointment he asks me to run through a series of exercises to see how my Parkinson's is progressing. There's "play the piano" - hold your hands level and wiggle your fingers as if playing an imaginary keyboard. The Neurology pianoes were never going survive Andrew Lansley's sweeping NHS reforms as part of David Cameron's government's austerity measures and there is a slight downward trend in the number of organ donations in the UK. In another test he stands behind me and pulls me backwards to see how well I resist. As far as I can tell, he has never made the rabbit ears gesture behind my head or made silly faces. I suppose I don't really know but it doesn't feel like it. This test requires tr...

It's been an eventful week. On the 15th February 2024, I received an email from Norfolk County Council's Blue Badge Unit to let me know that my application had failed. The refusal was summarised in three bullet points: You do not have a level of qualifying disability or functional loss to be eligible for a Blue Badge. You state that you are able to walk in excess of the Department for Transport’s eligibility criteria. The symptoms of your condition(s) are variable in nature and therefore do not have a substantial and permanent impact on your mobility. I should explain that a blue badge in this case refers to a paper disc that one can display in the windscreen of one's vehicle to indicate a disability that qualifies for use of disabled parking spots in the UK. The first email I have from the Blue Badge Unit is from September 2023 although the saga has run on longer than that. I h...

I used to think that the surest way to kill a conversation was to announce "I work in Computing." Panic would grip my respondent and their eyes would dart around the room like a trapped animal. "Err, I'm just going to get another drink," they might say after hastily draining their glass. They would slope off before latching onto someone (anyone) else. I was wrong. There were occasions where somebody had a problem that they thought I might be able to help with so we would talk for a while at least. In my last blog entry I described how Parkinson's was affecting my concentration and how that was making it difficult to do my job. At the time I was hopeful that I would be able to push through those problems and persevere but it hasn't turned out that way. I've been off sick for some time now as we seek a resolution. I keep busy by doing stuff around the house and garden (you probably would not believe m...

Parkinson's is changing my brain. There are a lot of gaps in our knowledge of how Parkinson's works but that observation has been established for some time and is kind of taken as read. To try and keep this blog light-hearted I often focus on positive things that are going on in my life. A new thirst for creativity has become a recurring theme. It is really positive and I have enjoyed following the path it has taken me. Recently, I've been pausing a little to look back along that path to try and make sense of some problems that are affecting me at work and work out why things aren't altogether hunky-dory. My work suffered badly immediately after my diagnosis. I read lots of good advice about strategies for coping with PD and I told myself that I wouldn't let it slow me down but there was a part of me that just waved a white flag and gave up. I think I have mentioned before a weird sense of relief that came with the diagnosis. I s...

Fingers slowly turned to stone, The seed already sown, Today, I see it full grown, A companion I’d rather not known, A life popping pills, Just to try and stay still, To witness the thrill, Of a drink unspilled, Drifting, Reality keeps on shifting, Systems slow, gears grind, A shadow clouds my mind, Well, things could be worse, I had the foresight to marry a nurse, I can still code, When my thoughts finally load, I can live with the dreams (so vivid), A pack of wolves, ran off with my tools. Wild? I was livid, Drifting, Reality keeps on shifting, I’ll be back from the deep, Just need a little sleep.

Why do we make art, be it painting, music, film, sculpture, poetry, or whatever? There must be countless reasons. For me, it is about trying to capture something beautiful or otherwise noteworthy that I’ve experienced or maybe dreamt. The most basic aim is to create something that triggers a memory of the ephemera that caught my attention. Better than that would be to fashion a thing that communicates the passion that inspired me to those close to me. If I’ve done a really good job, it may even appeal to those outside my circle. That would be nice but it is, for me, a smaller concern. The thought of putting a smile on the face of one you love is appealing. It’s why we give presents on birthdays and at Christmas. It is part of love. I got a paper round when I was about fourteen. It paid pretty badly but it meant that I had a bit more money at least. Up until then, my Mum had very kindly and judiciously bought Christmas presents on my behalf. That year, I ...

The sixth form college where I studied in the 80s was about a 45 minute coach journey away - perfect for playing one side of a C90 tape. My fellow students started bringing along their music and asking if the bus driver would play it. There was some bad stuff and some good stuff but, in my opinion, nothing as good as the Genesis albums that I had been collecting from second-hand record shops. I made a mixtape representing all ages of Genesis to that point. It was epic. I waited for my moment then asked the bus driver to play it, which he did. I was apprehensive for the whole journey, wondering what people would make of it. When we reached college, a girl approached me from the back of the coach. I remembered some friends had speculated at one point if we were well matched. "Was that your tape?" she asked. "Yes, that's right," I replied. "If you ever try and play that again, I'm going to shove it so far up your...

One of the drugs that is prescribed for me to help manage my Parkinson's disease is Rotigotine. Since the causes of Parkinson's are not well defined, all currently approved Parkinson's medication, including Rotigotine, are limited to treating the symptoms. Rotigotine is a dopamine agonist. Wikipedia describes an agonist as: a chemical that binds to a receptor and activates the receptor to produce a biological response. Rotigotine is supplied as transdermal patches, in other words, sticky patches which you stick to your skin so that the drug may be gradually absorbed. Nicotine patches are another type of transdermal patch that you might be more familiar with. If I have understood it correctly, the Rotigotine molecules have a similar shape to dopamine which means that, once they enter the blood supply, they can bind to the same receptors as dopamine (i.e. the dopamine receptors). I think their shape also means that our brains ...

This year the theme for the Parkinson's Art poetry competition was 'empowerment'. I haven't ever really tried poetry but after reading about it, I found myself thinking about empowerment and imagining how that could be expressed in a poem. My step-dad has discovered an amazing talent for poetry during lockdown and some of the rhythms and ideas of his poems inspired me to give it a try. I also found myself borrowing ideas from an old friend, football team-mate and colleague who writes a birthday verse for each of our group at work every year. Thanks to both those lovely people. The poem itself probably sounds quite angry which is not like either of the people who inspired me. Specifically, I think I was annoyed about a YouTube advert featuring Nigel Farage earnestly asking "have you noticed how everything is becoming more expensive?" One might reply that, in a lot of ways, it is exactly what exper...

Its nearly a year since I started this blog with the grand ambition of making it a shared platform for anyone whose life had been touched by Parkinson's. I was thrilled that several people accepted my invitation to contribute and I'm very grateful to Linda and Tricia who were generous enough to submit their respective stories [ 1 , 2 ] which you can still read today. My host site, Blogger , makes it possible to create a shared blog along those lines but I hadn't realised how complicated that process was. If there is anyone who would still like to contribute, I'd be delighted to help with that but I appreciate why the complexity is off-putting. I was reminded this week of something that Linda wrote on the Facebook group where I met her around the time when all this started. In one thread she said that she believed that Parkinson's had brought out a creative streak in her. My initial response was to question how a degenera...

I was privileged to be part of the inaugural Sport Parkinson's Try-athlon last Saturday, 24th July 2021.  Privileged because it gave me the chance to meet so many whose competitive spirit is undimmed by Parkinsons and watch them take their opportunity to shine. Privileged to have been welcomed to the line up of Shaketar Dontask , a team of players who I had only met via Zoom a couple of days previously. A great bunch of lads and great players: Stuart, the goalkeeper who had to put aside his walking stick then pulled off a string of amazing reflex diving saves; Richard who covered every blade of astroturf and was 100% committed in everything he did; Sam, who brought us together and read the game perfectly so that he was always there to intervene with a well judged tackle or pass; Gary, who always made himself available for a pass before jinking his way through the opponents defence with his close control; Stu, always finding the right positions an...

I guess that anyone with any experience of Parkinsons is familiar with dopamine. It (or the lack of it) is the root of the condition. The NHS website describes it succinctly: Parkinson's disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain. Dopamine is an important neurotransmitter, that is, a chemical that stimulates neighbouring cells to transmit messages around the nervous system. Just about everything our bodies do depends on communication from our brains so as these transmitters diminish, we can expect all manner of symptoms. I delayed speaking to my GP for several years after noticing that I was finding it more difficult to move my right hand probably due to fear and denial. I think it was my wife who persuaded me that I really ought to have it looked at. I asked for an appointment to see a GP at my local surgery b...

Since being diagnosed with Parkinsons I have been touched by how many friends and family have donated to and raised money for Parkinsons related charities. At some point I made a mental note that I should return the favour for another charity one day. As the new year dawned I checked my Facebook feed and up popped a challenge from Diabetes UK: UK Wide Cycle Ride . The idea is that you choose a distance that would take you from one side of the country to another and to spend April accumulating miles toward that total and to gain sponsorship as you work towards that goal. I hadn't come across it before but I think a lot of charities also do something similar. Image by Ricarda Mölck from Pixabay Anyway, I hadn't made any New Year's resolutions, I've always enjoyed cycling and I've seen the serious impact that diabetes can have on families so I signed up albeit for the shortest available distance: 120 miles. That wo...

I got my first dose of the Astra Zeneca vaccine yesterday. There was a steward to let me in to the health centre, another to guide me to my seat and tell me when it was my turn for the pre-assessment, another to greet me to the area where I was to wait for the jab itself and finally, one to check me out. As it turned out, the whole operation was so slick that I didn't have time to sit down in the second waiting area. I checked my watch as I left and it was only five minutes past the time of my appointment. I was hugely impressed and grateful once again to our National Health Service who this week learned that they would receive a paltry 1% pay rise after a year of unprecedented stress. The justification that the economy is under extreme strain might be understandable if our government hadn't squandered billions by handing contracts to third parties with no history of healthcare to procure personal protective equipment (PPE) for NHS staff that had to be discarded when it was ...

Over the past few years my taste in music has changed quite a bit. My preference has tended to be for guitar based music but lately I have preferred to listen to electronic, often quite repetitive music. I have occasionally wondered if there was some sort of link between the way that Parkinsons affects the brain and this change of perspective. Of course, people change their mind all the time about music but this switch coincided quite closely with the first of my symptoms to manifest themselves and has been quite radical. Those early symptoms left me with reduced motor skills on my right side. It is interesting (though probably coincidental) that the word motorik which is often used to describe a 4/4 beat used in electronica actually translates to 'motor skill'. I joined the Reddit Parkinsons group recently and they have been very helpful and informative with their replies to my questions so I thought I would chance my arm and ask if anyone had a similar experience. The...