Tremr

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...

I started making some playlists of Parkinsons related videos to add to the new Tremr YouTube channel today. In one of the videos as Michael J. Fox goes out to meet other Parkinson's patients he describes each patient as having their own version of Parkinsons. I think that sums up the weird cocktail of symptoms that affect us quite well. In my version, a lack of dexterity in my right hand is what brought the disease to my attention and more recently I have noticed that my smile has become more crooked and that my right leg lags behind more than it did. Eventually I got round to searching " asymmetry Parkinson's ". I seem to have spent a lot of time discussing unknowns and riddles in my entries so far so it wasn't a huge surprise to find the top hit is a paper titled " The mystery of motor asymmetry in Parkinson's disease ". The abstract goes on to discuss the unknown cause of this asymmetric onset. The reality is that, even with recent strides i...

Perhaps the hardest thing to get used to when you have Parkinson's Disease is the knowledge that it is progressive. To put it bluntly, its going to get worse rather than better. I mentioned in my first entry that, by the time symptoms become obvious enough to diagnose, PD has already significantly depleted dopamine production in the brain. Living with Parkinsons poses lots of riddles though. Why does it affect movement on my right side so much more than my left? Why is it worse on some days than others? I encountered what is, to me, the most intriguing puzzle one morning not long after diagnosis. I was sat up in bed looking accusingly at my right hand immediately after waking up. I flexed my fingers in a sort of air strum and, to my surprise, my hand responded without any of the stiffness that I had become accustomed to. This felt like a spark of hope after a pretty bleak few months. After five or ten minutes the slowness seeped back in. I asked my neurologist about it at my next...

Parkinson's is associated as an old man's disease. Tremor, shuffling, slow movement. So imagine my horror at 47 when I was diagnosed with Parkinson's. I was working as a doctors' receptionist and I handed in my notice as I was unsure what the future held. I could just let it rule my life or I could fight back, so I fought back. I pictured this gentleman dresssed in a white suit, a hat and white socks and shoes. He had his foot inside my front door, he kept knocking but I refused to let him in.  I named him Mr Parky. I was surprised how little I understood of the illness so decided to research it myself. I was put on medication and slowly my symptoms improved. I too suffered from slowness stiffness and shuffling- these are called motor symptoms - but there is more to the illness than what you see. You can lose your sense of smell, taste, it can cause depression, anxiety, it can affect your thinking, memory. It's classed as an invisible illness, people suffer with the...

I have no idea how Parkinson's managed to creep up on me, it seemed so sudden, yet when I look back had probably been lurking in the background for years. I had suffered from constipation for ages, plus anxiety, plus low blood pressure, sometimes my right hand would tremor or I'd feel wobbly all over, but I didn't think that this could be the precursor of what lay ahead. I had a high powered job as a Senior Manager in Child Protection and travelled all over the country, often not having time to stop for lunch. I remember the time I was brought to my knees as if it was yesterday, although this was 10 years ago in November. I had stopped at a large store to get myself a sandwich, when suddenly I lost all conception of where I was, I tried to run up the moving stairs which were coming down towards me, then turned around and tried to get some money from my bag to buy a poppy from 2 elderly ex-servicemen standing behind a table. I fell to my knees spilling coins ever...