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Getting diagnosed with Parkinson’s disease

You might guess this from the title – I have been diagnosed with Young-onset Parkinson’s Disease.

18/07/18

The day my life changed forever. The day I was diagnosed with PD.

As an aside, I really like the symmetry of the date – If you’re going to get diagnosed, this is the kind of date you want to do it on. Writing a blog post? Look at how good that date looks. Doing a talk? Imagine having that date fill a slide.

So, how did this happen?

Picture it: Costa Rica – August 2011. I’m experimenting with Polyphasic sleep and I’m doing pretty well on less than 6 hours of sleep a night. Being a computer geek I spend those extra hours I gained playing computer games. I get RSI and start a journey trying to manage the pain and discomfort that takes me through the next 5 years or so.

It’s now early 2017 and my pain is under control and I’ve figured out ways to deal with the discomfort. Better keyboard, trackball, good posture and a 3 minute break every 25 minutes. But my right arm is weak and uncoordinated.

9 March 2017: I give a talk at DevConf (About keyboards and RSI incidentally) and for the first 5 minutes of my talk my arm is shaking uncontrollably. I vaguely remember delivering my talk while in my head I’m going “Oh fuck, oh fuck, oh fuck, oh fuck…”. I think I even knew at that point that I had a neurodegenerative disease. But then the tremors go away and I manage to convince myself that it was just stress.

Now it is May 2018 and I go see my GP because I have flu. I mention that I’m losing mobility with my right arm. She suspects it is a problem with my neck and sends me for x-rays. My neck is fine. She refers me to an orthopedic surgeon.

June 2018: I see the surgeon. He diagnoses me with Carpal tunnel syndrome, but refers me to a neurologist for nerve conductance tests because he can’t explain all the symptoms. In this same week my mother asks me why I’m limping again and my world comes crashing down a bit because I realise that it’s because my whole right side is affected, not just my arm. And I know this means my brain is broken somehow.

July 2018: I see the neurologist. When I tell him I’m there about my arm he tells me that he thought it was about my leg. I wait for him to tell me how exactly my brain is broken.

So how do you get diagnosed with PD?

Ironically, very similar to the way you get diagnosed as drunk by a traffic officer 🙂 Walk to the door and back. Follow my finger with your eyes. Touch your nose, touch my finger. Open and close your hands as fast as you can.

Then he threw in a few more things like hitting me with a rubber mallet – on the knee (which I expected) and on the chin (which I didn’t), scraping my hands and feet with a tongue depressor, having me stand with my arms crossed and then pushing me off balance from behind.

After all this, we sit down and he starts with “Which do you want first” and then trails off and says “Actually, there really isn’t good news. The problem is with the left side of your brain”. Then after a few minutes of biology lesson about how my brain should work he gets to the important part. He tells me that I have a growth, damage from a stroke or Parkinson’s. He also tells me that if we were in a small town like Aberdeen where he didn’t have access to other tests, he would say Parkinson’s, but the progression wasn’t typical.

So, he tells me to get myself admitted to hospital so that he can run every test he could think of.

I sit in my car and cry for a bit before composing myself and trying to decide which is the least scary option.

16/07/18: I’m admitted to hospital. My blood pressure is through the roof. I have an MRI (Which I find quite relaxing despite multiple warnings about how uncomfortable it can be). There’s also urine samples and 5 vials of blood taken.

17/07/18: Everything comes back normal. So the neurologist does a lumbar puncture. If anybody tells you it’s not that bad – they’re lying. About 2 hours later I sit up to eat and nearly fall off the bed with the dizziness. My back is really sore for days after this. They take another 5 vials of blood for tests.  In the evening, the nurse gives me a yellow tablet – I know carbidopa tablets are yellow.

18/07/18: The neurologist comes by in the morning and tells me that the lumbar puncture was clear, blood tests were all normal, I’m getting discharged and I need to take the tablets 3 times a day on an empty stomach. It’s at this point that I get a bit impatient and ask him what the fuck is wrong with me. He tells me that I have Young-onset Parkinson’s disease, but he really can’t tell me what to expect because my symptoms are atypical.

I really don’t remember much between that time and my wife fetching me. I do remember getting home and being in denial. I’m not in denial anymore.

I have Parkinson’s.