Roller Coaster Ride of Emotions

I guess one of the side effects of the news I have received is that I am eating non-stop and I don’t care

I am literally riding a very unstable roller coaster ride of emotions. It’s up and down all the time, and it’s like riding in the dark, I never know when I am going up or down.

It’s been a rough week. I still don’t know how to process it. I am avoiding to think about the big picture of how my life will change, because if I do, I get really overwhelmed. So at the moment I am concentrating in taking one day at a time. I guess I am also paying more attention to my body and hoping I am not having ‘bad days’, but just paying more attention to symptoms. But I don’t know for sure what is going on. Is it all in my head? Or am I really shaking from the inside out? Was that a hand twitch? Or am I imagining it?

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Early Onset Parkinson’s Disease

It all started three and a half years ago

I noticed that my balance changed when I walked and I became really clumsy, even more so than normal

But it was just one of those things you think to yourself ‘it’s nothing’ and I honestly thought it was just that – nothing.

Then I started to notice that my handwriting, that always been something I was so proud of, started to change. I really had trouble writing, like I really have to concentrate to write a sentence. In denial that anything could be wrong, I put it to the fact that in this technology days, we actually don’t do a lot of handwriting, well, I didn’t anyway. Working in an office, typing instead of using a pen, texting, instead of writing letters. ‘I must start using my pen again’ – I thought to myself.

Then I notice that the right side of my body was slower, felt heavier than my left side.  Like I can tap my foot really fast with my left foot, but my right foot does not respond to my brain screaming ‘MOVE FASTER’ but it just doesn’t. I started having trouble with gripping things, like pegs when putting the washing on the line. My little finger and ring finger would start shaking non stop and then I would have to concentrate really hard to make them stop.

Then I could not deny it anymore – something was not right.

You know, it takes courage to get to that point, because ignorance sometimes is a bliss. But being so young (I was 29 back then), I thought that maybe it was all in my head.

So I went to see a neurologist, that was two years ago.

It was bad timing. I was moving states, the neurologist was going on holiday. We had our first appointment, he ordered an MRI – off he went to his holiday somewhere sunny, and me, I went to get my brain photographed.

Because the neurologist was on holiday, I never got to see him before I moved states. Instead I went to my doctor, who read the MRI report and told me that the neurology was looking for MS or a brain tumour (I had thyroid cancer before). But the MRI was clear for both. So the mystery continued, but I was too busy to do anything about it.

During the two years after my MRI, my symptoms did not go away. I always describe it like this: These issues I have, difficulties, are always with me. I am always reminded that my body is somehow broken, when I have to write something fast (which I can’t) or go up a flight of stairs quickly, which is impossible.Then I have worse days, which I feel shakey

People around me don’t really understand when I say I can’t do something. Like my personal trainer who wanted me to jump on top of a wood box. I kept telling him: I CAN’T! but he would not listen to me. He probably thought I was being too much of a girly girl and not even giving it a try. Little did he know that my right leg was not responding to my brain command.

So, lately I have been feeling a bit strange. I am more clumsy, I cannot go through a Body Balance class. And I have periods of time when I feel that the right side of body is shaking from the inside out. I can’t see any tremors on the outside, but I feel my body shaking. It is so frustrating. And I am craving sugar more than ever. Like I NEED to have biscuits and lately I am ashamed to admit that I have turned into the Cookie Monster. And I don’t really like cookies!

So Fast forward to a month ago. It all got to the point that I decided I needed to get this investigated properly. So off I went to my doctor, who referred me to a neurologist.So last Friday, finally, I went to see a neurologist again.

He was good. He went through my history, asked me to describe my symptoms. Now, I have a really hard time doing that. I can’t explain how I feel properly apart from the ‘my right side is not working properly, I struggle with writing and balance’ kind of thing. So when he got me up to examine me, the motor exercises he made me try and do were targeted specifically to what he was looking for, and in a way I was relieved that he got to see what I mean. Because I really struggled with some of them, REALLY struggled.

After we were done with the tests, we sat down. He looked at me and said: ‘Well, you are displaying symptoms of Parkinson’s. But  you are young (well, after I read 1000 stories of people being diagnosed early, I guess I am not sure how to take that?).

He went on to tell me he wants me to go to another appointment where he is going to see me with a group of another 8 neurologists, so they can discuss my case

Meanwhile I am left to despair of the limbo stage, until they tell me for sure

But the stories I have read, they are my own. I feel helpless to think that that is in fact my fate and I can’t do anything about it

Today, I sit here, jittery, shaking from the inside out (literally) wondering, researching, hoping, focusing on crossing one bridge at a time and wondering how my life will be in ten years time

I would love to hear from anyone with any experience with PD. Because I need to admit it to myself: I am so scared