How it started and taking it one day at a time

 

Hello everyone and welcome to a wet and cool Saturday reading the comments on my post about Parkinson's this morning over at my main blog made me think about how I feel about things.

Well I feel like I can take a few steps forward only to slide backwards, for me Parkinson's is like trying to walk across a river by stepping on slippery stones. You are not sure footed and feel like you are going to end up on the ground at any moment.

I have been travelling this route for what seems at times like ages, I first noticed a tremor in one of my right hand fingers after dropping Leo (Sam) off at school one morning, it was in fact the first day of school in 2015 and a teacher had to pry him off me in order for me to leave. I was walking back to the car and noticed my finger moving, I remember thing what the hell is wrong with my finger, I then got in the car and left and the movement stopped and I gave it no more thought till it happened again a few days later.

Over time I started to notice it when I did other things like using the computer mouse but still didn't think much of it, over time though it started happening more and more. I did manage to hide the tremor from my family for 6 to 8 months different people noticed it at different times.

After my doctor noticed it I was referred to a neurologist at the hospital who said it was a Functional Tremor and wouldn't get any worse. He prescribed some Parkinson's medication which did very little but he only had my try it for 4 weeks and only the one type before giving that up.

He was wrong things did get worse so I went back to see him and he referred me to a movement disorder clinic which turned out to be just another neurologist who agreed with the first guy.

When things got really bad I decided to see another neurologist privately the first one wasn't sure he thought it was kind of like a Functional Tremor but not completely and then I was referred to the lady at Westmead (Sydney) a 2hr drive from here and thing started to improve, that was only a couple of years ago and it was only after she arranged for me to be seen by a team of doctors that the term Parkinson's was mentioned.

My mum always said it was some kind of Parkinson's and my GP also said he thought it was more like Parkinson's.

I am thankfully that I have always been one who takes life one day at a time, as now each day is different with it's own struggles.

What we hear may not be what was said

 Been thinking about how people can hear the words being said but interprets in their head something different to what was meant. I feel many people hear, interpret, perceive in their own way and then get it into their head that they are being lied to because what they have heard and understood isn't necessary what was meant.

I know with Tim we can tell him something about how we are feeling perhaps about something he has said or done but if asked to explain what he things we are trying to say he will come back with something very different. He will often come back that we are saying he is stupid or he is wrong, at times we may say that we do feel his understanding of a situation maybe wrong. Of course as I write this I cannot think on a damn example to give you which is annoying.

Sometimes I have said that just because something isn't how we want it to be doesn't make it wrong just different.

Waiting not doing

 Hello everyone who is choosing to read this new take on an old blog from now on this will be about whatever trivial random thoughts that pop into my head.

Like Sunday night I was thinking about how some people have to wait and wait and wait for others to do stuff for them this may not be how they would like it but it is how it has become.

I used to be able to just do stuff I wanted to do, like go to the shops either for stuff I needed or just to wonder around having a look at what there is. Then I lost my licence being declared by my doctor as being unfit to drive.

Now I have to wait for someone to either drive me to the shops or as they often prefer go shopping for me. No one wants to admit that they find it easier to just go and get what I need over taking me to the shops. This was made worse by Covid and even though life for most has returned to pre-covid normal I feel it hasn't for me.

Even at home there are things I need help with and I as for either Tim or Tasha to help me but it isn't uncommon for me to still be waiting an hour or more later.

Thankfully I am back to doing a lot of shit around the house myself but I am unable to drive myself to the shops. I am also thankfully for online shopping but it isn't the same.