So now what?

I made a big revelation to myself and others in my post last night. I think — in fact I know — that the behavioural changes PSP brings are starting to reveal themselves: anger, anxiety, major mood swings and also apathy. I have been blaming others for my moods, but it is me, and I have to hold my hand up.

I was always a royal pain in the neck. Now I have ascended to the throne.

But seriously, what do I do with the knowledge I think I now have?

Of course there are practical things… talk to the doctor and therapist, adjust my anxiety medication, avoid situations which trigger these episodes more often, try to be more self-aware. All of this I can and will try to do. I will also tell the people I love that this is not the real me.

But back to the real question: how do I deal with the fact that something neurological is changing the wiring in my brain and affecting the way I behave?

It is the ultimate punishment for a control freak.

It is also, theoretically, the ultimate excuse — although I warn anyone tempted by that idea that it comes attached to PSP, so it is hardly a free gift.

I have always tried to take responsibility for my actions. Now I have a disease that feels as though it is slowly taking over the joystick.

The truth is, I do not know what to do with that knowledge. I simply do not.

I assume that for now it is still relatively mild – it comes and goes. But it will progress, and that scares me.

People are occasionally skeptical about behavioural and psychological symptoms, unfairly so. I am sure there will be some people who say, “Just snap out of it.”

But nobody would say that to someone with Alzheimer’s disease. PSP is also a neurodegenerative brain disease with the same TAU protein at its core. The damage simply shows itself differently.

So if you genuinely think “snap out of it” is an acceptable response to neurological disease, then perhaps you can say it to someone with PSP as well. Honestly though, I do not think I would want to know you.

Back to my plan of action – first don’t panic, second I have to realize that I am not trying to solve something because I can’t, I am just trying to do my level best to deal with it – that is easier.

PSP is really settling in… I woke up in acute leg pain, tried to reach from my wheelchair and turn the AC on and tripped and hurt my toe and then this latest realization. It is all a bit much but as I reach the end of a week of intense blogging I am going to try to relax and go with the flow a little. A good friend is coming from out of town and I want to see if I can, in as calm an environment as possible, put some space between me and this beast.