After a bit of a wait I saw a consultant neurologist on Wednesday at Edinburgh Royal Infirmary.
I have probably had tremors for at least two years although to start with they only happened when I was particularly keyed up or nervous (having an argument with my mum about Brexit also sent my shakes through the roof!). I ignored them and when they got worse, tried to hide them. I promise you that when you’re speaking before a group (my Toastmasters club) you can’t hide them for long. A fellow club member emailed me to point out that my tremor was ‘the elephant in the room’ and that they were there to support me. It was such a relief to be open about it! I watched a video of myself trying to hide my shaky hand behind my back when speaking. Excruciating to watch.
Then my mum came to stay and she noticed my right hand shaking. “Go and get it checked out,” she said, “I’m sure it’s nothing.” Thanks Mum!
So last October I went to see my GP and she arranged blood tests but she said all along that she thought I had Essential Tremor not PD. Finally she referred me to neurology as well as a podiatrist for my right foot which goes into spasm. Actually the foot thing preceeds the shaking hand, I think. I remember that I was entered into the Loch Ness Marathon in September 2016 but didn’t start the race because of my foot cramping up from time to time. It’s now much worse and I can just about make it to the bus stop, although I can run further and my wife and I go to the gym.
I saw the podiatrist and she was excellent but said that she couldn’t do much until the neurologists had had their say - she believed that the foot issue and tremor was all part of the same thing.
Fast foward to Wednesday and my appointment with a consultant neurologist. He asked a few questions, got me to walk up and down and did reflex tests. Then he asked me a strange question.
“What do you think it is?” he asked.
“Um, I think it’s one of two: Parkinson’s Disease or Essential Tremor”.
He said something like, “I can tell you, it’s definitely NOT Essential Tremor”
So he left me to fill in the gap… “So I’ve got Parkinson’s Disease then”
He was 100% certain that I have PD, almost too certain. I had been given to expect no definite answers in the first appointment so his certainly took me back a little. He’s sending me for a scan of my brain but stated that he expects such a scan to come back looking normal.
He’s writing to me and to my GP and hopes I will start on levadopa in the next couple of weeks. I’d like to sit and talk to her again and see what her opinion is. He’s also going to get the Parkinson’s nurses involved too.
Actually I want to kick myself as I should have questioned him about his certainty - what specifically clinched it for him and what would have had to be different to convince him that I had ET? Too late now, but I guess the nurses will really know their stuff too.
In all of this, my boss at work has been fantastic. I have Dragon on my laptop (would highly recommend) for when my shaking fingers refuse to co-operate and I have a VPN key so I can work from home if I am having a bad day. I decided that openness was the best policy so have told everyone who I have regular interactions with. They’ve all been lovely.
Sorry for the ramble but it feels like it’s been a long journey and although I would prefer it had the diagnosis been ET, I’m still relieved to at least have an answer, even if it seems scary at times. Now to get used to the idea, get active and hopefully get fit enough to do another marathon!
Hope everyone is having an excellent Friday evening!
Euan (in Edinburgh)