Corticobasal syndrome?

[GinnyBerry]

I recently requested my full medical records so that I can share them with another doctor. This was actually really easy. I was able to get my medical records back to 2015 — which is 3 years prior to my diagnosis. I received them electronically in less than 24 h.

I’m really not sure I recommend it, though. I received a gut punch when I saw that my neurologist had actually diagnosed me as having “corticobasal degeneration.”

He had always told me that it was atypical Parkinsonism and only time would reveal how bad it was. He actually told me to enjoy my life (which I am!).

So now it seems that I may have this other thing. I had secretly been worrying I’ve had loss of cognitive function over the last four months. Maybe it’s true then.

I have an appointment with a fancy specialist in the next couple weeks (though he specializes in Parkinson’s). So, I’ll get a second opinion.

I guess it doesn’t change anything. But I’m freaking out a little.

[Bolt_Upright]

Thanks for sharing. I guess what your doctor told you was technically accurate, but incomplete. I am sorry you are going through this. Good luck with your appointment and may God bless you.

[Reetpetitio]

I'm sorry Ginny, I can imagine the shock. Really good you've got a follow up with someone else. You're right, it doesn't change anything; maybe it can help you focus on things that help with cognitive function? I diffuse Rosemary oil overnight as it's meant to help, according to various studies. Just looking to buy a second burner so I can diffuse it during the day too! Ginko biloba is a herb to consider as it increases circulation to extremities. Dr Mishley found it ranked no 1 supplement in her survey. And perhaps look at a masseur / Upledger craniosacral therapist / chiropractor to make sure your neck and shoulders are as released as possible, and not restricting blood flow to the brain (mine were). I too worry I have atypical Parkinsonism, like my mother did, so you have my full empathy - wishing you well.

[GinnyBerry in reply to Reetpetitio]

Thanks for the ideas. Rosemary oil sounds lovely

And will look into releasing blockages.

[gomelgo in reply to GinnyBerry]

I would also suggest Feldenkrais Physical Therapy. It has done so much for my nervous system, and my body always feels good when I leave there.

[LostinHeadSpace]

Hi GinnyBerry,

It’s not the diagnosis one hopes for, but the PSP forum here on the site is actually for Corticobasal diseases too, and the folks there are lovely!

[GinnyBerry in reply to LostinHeadSpace]

I noticed that it is mostly caregivers over there.