Stitch This

Discovery is an interesting concept.

A tiny piece of knowledge, of information and your life can change beyond recognition.

I woke up this morning and I looked on YouTube and read a video blog of somebody’s diagnosis of Parkinsons.

Incredibly ,they got the diagnosis from standing start to full knowledge in less than 24 hours which is almost unheard-of in these NHS delay ridden times. And the thing that made me stop and think was not the diagnosis itself – it wasn’t even the speed – it was the fact that the guy telling the story was sitting next to his partner and that she had been there for him throughout the process. And five years later whatever she was still there, finishing his sentences for him! Obviously, this struck a chord with me in these straightened times. And it took me back to my diagnosis 10 years ago.

Parkinson’s UK and similar organisations are always saying that sharing the story of your diagnosis is helpful to others, so here’s mine. I think it’s pretty typical but nevertheless it’s interesting to me! There’s quite a lot so I’m splitting it over a few posts…save your tired eyes!

So, I was a healthy 35-year-old trying for a baby and full of career ambition and angst just like most people. Until I noticed one day that I was brushing my teeth with my left hand not my right and I thought “that’s weird” but didn’t do anything about i. Then I noticed that I couldn’t eat using my chopsticks as well as I had been able to. Now anything that gets between me and Chinese food is something serious – needs to be dealt with immediately. So I made an appointment at the doctor feeling very proud of myself, thinking things would be dealt with quickly. I went to go see him And he did all the normal tests and checked my capabilities on both hands and said “I’m not sure what it is, come back in six months if it’s still the same”.

Anyway within those six months I got pregnant and was understandably distracted, so never went back to the doctor and my hands got a little bit worse, but to be honest, the fun and games of pregnancy at the age of 36 by now were more engaging and so I didn’t do anything about it. My eldest son was born in March 2006 and I noticed that my hands were beginning to really hurt. I went to the doctor and I was diagnosed with de quervane’s syndrome and possible carpal tunnel. They did all the tests for carpel tunnel and couldn’t rule it out but couldn’t specifically diagnose it either. So they decided to do the operation on my right hand because it seemed a sensible thing to do. This was after having lots of incredibly painful steroid injections into my wrists and I said “well it’s going to be very inconvenient not be able to drive two weeks, before I have this operation is there anybody else i could see just to make sure that we’re happy that’s what it is “.

And that’s how I got to a senior respected neurologist who took one look at me and said “well I need to do the testing to discount any others conditions but I think you’ve got Parkinsons”.

I was by myself. I had had no warning. No inclination at all. Completely out of the blue. I don’t remember leaving the hospital but I remember walking home from the hospital in a daze. I phoned my husband on the way – I don’t remember what I said – I think I just decided to ignore it and get on with life as best I could. I mean I had a little boy, a tough job and hopes and dreams – it just seemed unbelievable. Therefore it wouldn’t have a place in my life.

And I carried on. I stayed in my job, travelling nationally and oversees, I had another son (and a miscarriage), I taught myself to write using my left hand, I learnt how to rest when no one could see so I appeared ok. I hid PD from everyone really even though I told people. I didn’t hide the words but I fought against their meaning and implications. I think many people do if they are honest. And it worked. For a few years. And then suddenly, it didn’t….

I will post the next instalment soon. What did you do when you were dx?