Tremr

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

As a teenager I attempted to teach myself guitar. I got as far as learning a lot of the chords but not beyond the stage of pausing indefinitely to switch between chords while sticking out my tongue like a toddler taking his first steps. Some of the finger exercises are etched in my memory though and I developed a bit of a nervous habit of rippling the fingers of my right hand like a flamenco guitarist. If only my left hand could get its act together. The first symptom that I noticed before being diagnosed with Parkinsons was a slowness of movement and lack of control in my right hand. I'd liken it to the grab-a-toy claw that you see in amusement arcades. You're sending the right signals but they are lost in translation. The word 'claw' always feels inappropriate in this context as it implies a kind of feral power which makes it all the more disappointing when you see the robot claw grasping ineffectually at the prizes. To feel that sense of detachment while trying

Yesterday was a good news day. In the 20 minutes that I had the radio on there were two really positive stories. The story about Pfizer's Covid-19 vaccine gives real hope that we might be able to return to something resembling normality after this strangest of years. The speed with which their vaccine and other similar ones have been brought to this stage is unprecedented. No one reading this needs reminding that Covid-19 has blighted everyone's lives and presented new and unwelcome challenges to those already struggling with Parkinsons so this is a breakthrough worth shouting about. I was still smiling about that story when Nick Robinson of BBC News started talking to Demis Hassabis of DeepMind about how they have largely solved the 50 year old problem of protein folding. Despite the enormous significance of the vaccine, I don't think that it's an exaggeration to say that this could be just as important. Image attribution: Dcrjsr While current treatments for Parkinso

For months, maybe years, after I was diagnosed with Parkinsons Disease I picked at my memories trying to determine how and when I developed it as if I could go back in time and change it. It is a completely pointless exercise since current research is unclear whether the cause is genetic or environmental . I have mentally dismissed the genetics component so that I don't have to contemplate the implications for my children. That leaves me with plenty of scope for trawling through all the stupid things that I have done in my life that might have been the decisive environmental factor. Could it have been the time when, after an all day drinking session I fell into a deep sleep while I was sat on a bar stool? I toppled backwards, still asleep and my fall was broken by the back of my head hitting the corner of the skirting board. Head injuries do seem to be quite a common factor in the development of PD so its possible. That was 20 years ago and I was diagnosed only five years ago so t