The journey to diagnosis

First a bit of background about me.  I am the youngest of four children and the only girl of an English Father and Kiwi mother.  As it turned out, both my parents ended up with Parkinson’s in their late 50’s (my Dad) and mid 60’s (my Mum).  As far as I know, no-one else in the family had the condition, although my Father’s sister died of Motor Neurone Disease.  I have always been very watchful for any symptoms such as tremors and started to think I was becoming paranoid about having the condition any time I had any kind of shakes.  However, during 2020 I had a COVID test, which was carried out by a GP attached to my usual practice, but not my own GP.   He commented to my own GP asking if I might perhaps have Parkinsons’ as he felt my face was quite expressionless.  My response when told this was initially, “well, I probably wasn’t exactly thrilled to be having something poked up my nose!” But this set me thinking.  During this time, I would also notice that I would be sitting watching television in the evening and I would get tremors in my left hand, sometimes quite violently.  Also, at times in bed my hand would be on my pillow and twitching to the point it was difficult to go to sleep.  As someone who has long been a poor sleeper, this was an unwelcome complication.

These symptoms were sporadic and because they were not constantly present, I tried to push my fears of Parkinsons’ into the background.  Two things happened soon after that brought home to me that it was time for me to take a serious look at what may be happening to me.  Firstly, we took our grandchildren to a water park and at one point I was waiting for a ride with my youngest and my left arm started to shake.  Not just my hand this time, but my whole left arm shook so violently that I had to hold it to my side with my right arm.  This had never happened to me before.   The second event came when my husband and I were starting a tramp.  We came to a stile early in the tramp and it was on a slope and quite a high step.  I held onto the upright and could not pull myself up.  My legs just felt too weak to boost me up.  This had also never happened before. 

I started noticing other things.  Even when my left hand was not moving, I could feel a “twitching” sensation under the skin.  I work in a field where I talk to a lot of people on a daily basis – and on many occasions I found I would start talking to a client or a colleague and have what I described as a ”mental stutter” where I became stuck in the middle of a sentence, not knowing how to proceed.  I would have to really focus hard to get back on track and sometimes I still was not able to recall what I had set out to tell someone.

When I went to my GP, he seemed reluctant to refer me to a Neurologist.  He commented that he had been watching my hand while we were speaking and had not seen any sign of tremors.  I told him that the tremors were not a constant thing and would sometimes not happen for days, but they had been frequent enough that I felt this had to be investigated.  He agreed to refer me, and I requested – if possible – that I be referred to Dr Tim Anderson who had been the specialist who supported both my parents.

On 15 December 2020, I met first with Dr Anderson’s registrar, who carried out several physical tests and asked me some questions about my symptoms.  She then conferred with Dr Anderson and they returned together, and further physical tests and more questions ensued and then Dr Anderson delivered those fateful words “You have Parkinsons’ Disease”.  I asked him if he had any doubt and he stated, “No doubt at all”.  So just like that I became a person affected by Parkinsons’ Disease and – by association – so did my husband!

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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