In my experience since I was diagnosed with Young onset Parkinson’s disease 6 years ago, friends and family don’t really understand what the disease actually is and how it affects someone. Obviously, why would they? For the most part they only see me when I am fully medicated and without a visible tremor, even when … Continue reading Battlefields of Parkinson’s (a work in progress)
A little Star
Some time shortly after I was diagnosed with early onset Parkinson’s , my main thought was for my little boy. As his Dad I have to do all I can to protect him but I am not quite going to be as physically tough for him as I would have liked. He will no doubt … Continue reading A little Star
Feeling like you want to scream Trying to make everything alright But your grip is fading away Just treading water with your power slipping away. Feeling low coz you've got to be positive Can't ignore coz you've got to beat this Can't carry on regardless Can't be accused of being reckless But clouds are beginning … Continue reading Alone
2 years in – The Sun and The Rainfall
A long time since my last post so there is a lot to update on my Parkinson's Disease experience. (Original post started in November 2019) It started with the Sun in Grenada in April , our trip to see where one half of our ancestry was from. When we booked the holiday, the story from … Continue reading 2 years in – The Sun and The Rainfall
A night out
I am not particularly drunk but to the world I must look like I have had a skinfull. I am walking through St Pancras station and shuffling like an old man instead of a man in his mid-forties. I am tired and I just want to collapse on my bed. My legs feel all tight … Continue reading A night out
Officially I have been diagnosed with Young Onset Parkinson's Disease for 14 months now. For the most part I can't really say much has changed. My gait and 'funny' walk is probably more noticeable , my physical strength is weaker, and I have had some apathy and examples, of what I would describe as out … Continue reading 1st year
My world is different now
For fear of the unknown, we mostly ignore the early signs which knock at our door. But in time we slow down to a beat not of the normal worlds rythm We then get told you are a person with Parkinson’s & the world stops in time. You freak , you process, you cry, you … Continue reading My world is different now
6 months ‘in’
I realised the other day that I had passed the 6 month point post diagnosis & hadn’t captured how I am doing. So this is a short update. I am still taking Rasagiline and none of my symptoms have really altered. Tremor is almost non existent. Rigidity is the main symptom along with a gait … Continue reading 6 months ‘in’
Everything being equal I reckon I can make it perfectly well to 80, that would be very respectable. So I am setting that as my goal! I am going to do everything on my bucket list , I am going to learn to ski, we are going to Bora Bora for our 25th wedding anniversary, … Continue reading Ceteris Paribus
Chopsticks presented me with an amusing reminder of how Parkinson’s is going to become a significant part of my life this week. Here I was in the swanky new Nobu hotel in London for a work conference. It kicked off with a bento box lunch & miso soup, sat at a fairly tight for space … Continue reading Chopsticks
It’s just a Question of Time
On November 20th 2017, I received my diagnosis of Young Onset Parkinson’s Disease, on November 22nd I was with my youngest brother watching my favourite band (I will let you guess or google who, if you’re interested) at The O2, London. Life had already moved on! I had a great time & a good few … Continue reading It’s just a Question of Time
No tremor, no problem.
I am conscious that I have announced to a lot of people about my diagnosis of Young Onset Parkinson's Disease, as I decided to be as open as possible from the start. Although this was an initial reaction that I now worry was a bit dramatic. It is natural of course but then I am conscious … Continue reading No tremor, no problem.
New Horizons – part 1
So I have a list of subjects planned out in my drafts folder & target dates to publish them. Some are just working titles , some are little triggers for me to come back to. I have been spending a bit of time trying to learn a bit more about managing this blog, which for … Continue reading New Horizons – part 1
This is a small update on my fourth visit to my Neurologist. It was a fairly short meeting, we quickly agreed that Rasagiline at 1mg per day was doing enough for now. He commented that I was very much more animated than previous meetings and I agreed, in that regard, I was doing well. I … Continue reading Waiting game
I am enjoying writing this blog although I have no idea how long I will keep it going; it will depend on the flow of ideas and usefulness in documenting my life with PD. I feel like I have more to say than I ever imagined when I started writing, I hope it is useful … Continue reading Dopamine please!
I am Idiopathic
'Of Unknown cause' or 'Idiopathic', that's me! I have always wanted to be a mystery, not quite being definable, not quite a stereotype. However, in a strange way I have lived with a lesser sense of purpose, 'with an unknown cause', than I feel like I am living or starting to live now. I feel … Continue reading I am Idiopathic
A New Normal
A new normal is the phrase my wife gave to me in the few days after I was diagnosed......