Parkinson’s and Axial Myopathy

I’m not sure where to post this…
I was diagnosed 11+ yrs ago with Parkinson’s which so far, luckily, is controlled well with meds.
The. Last 2yrs I’ve developed other problems that didn’t tick all the boxes to be part of my Parkinson’s
My consultant and his colleagues now believe that I have a second very rare neurological disease called Axial Myopathy?
It’s so rare its very difficult to find any information about it. Does anyone out there have both like myself? So if anyone has any information on this I would be very grateful.