So my personal story may or may not involve Parkinsons directly. I guess I have a few questions overall and things I need to find out.
Parkinsons has been rife in my family. What has been established with my direct family is it is very much genetic.
Back down the line my great granddad had PD. His daughter (my grandmother) didn’t but she’s always been quite shaky and nervous. Her 2 children, my mother and uncle both were shaky/nervous people all their lives and eventually diagnosed with PD in their late 20’s/early 30’s.
My uncle died in 2010 and my mother died a few years ago.
What was established with my mother, perhaps due to breakthrough’s in research over the last 5 years is that she didn’t have PD as such, but it was more a Parkinsonism thing caused by a faulty gene that had been passed on which is “Autosomal Dominant”.
As people may know, there’s 2 types of gene that can be passed on, Autosomal recessive where people can be carriers but it can only be passed on if both mother and father have that gene, and Autosomal dominant where only 1 parent needs to have this gene to make it a 50% chance of being passed on to their children.
If someone inherits this gene it doesn’t mean 100% they will get the illness but they could have some of the symptoms associated with the illness, or even have no symptoms or illness at all.
For me, just like my mother and uncle I struggle with severe nervousness. They had that all their lives and then ended up with their illnesses. In a way it was like all those nervousness symptoms were close to Parkinsons symptoms and all that needed to happen was the dribbling and more hand tremors for the diagnosis to happen.
I’ve been to doctors but I’ve only ever been diagnosed as having anxiety, event though none of the anxiety treatments have ever worked.
The big problem I have is when I mention the Autosomal dominant illness to doctors, they don’t actually have a clue of what that is. Then when I mention Parkinson’s they tell me outright that I don’t have it, simple as that.
I don’t know weather the findings are quite new so they don’t understand. It’s always classed as anxiety and I’m sent to mental health teams. When I try and explain it to them about Autosomal dominant, they become very dismissive as their views of PD seem to be that it’s an old persons illness and I’m not showing the symptoms of dribbling and extreme stiffness so it can’t be that.
What it means for me now is I’m missing out on the support I truly need, especially if it is something to do with that Autosomal dominant gene which as we know can’t be cured but with the right support people can live a relatively normal life.
I don’t know how I can approach a doctor about it before like I said before, whenever I do they are so black and white about things saying I don’t have PD and it’s just anxiety. Yet, no treatment for anxiety actually works.
They even say the more I go out, the more the anxiety should reduce, but this never reduces. Then when I say that I get the blame for not trying hard enough, even though the symptoms could be down to that gene.
Anyway thanks for reading