Are my options for brain surgery like DBS significantly reduced because of having a GBA gene mutation. I understand with surgery there is a risk of rapid decline in cognitive function because of this mutation.
Here’s a good article which summarises the latest ideas around this difficult question -
I’m replyiing to this thread, even though it is more than 2 years old, because I’d be very interested in hearing about other people with the same mutation of the GBA gene that I have. - L483P. (aka L444P).
I was diagnosed with Parkinson’s 7 years ago. My father had Parkinson’s, so when I saw the ad for people with familial PD to join the RAPSODI study at UCL, I joined up and two. years later I was told I had the gene.
Naturally I’ve was very interested in the results of the research into GBA L483P both by UCL and other institutions… My interest has waned quite a lot, though, since all the research results are so negative.
It seems I have a form of PD which is quicker, has worse symptoms, is a hgih risk for dementia, and to top it all is not suitable for DBS. I would find it dispiriting but for the fact that I seem to be the outlier to beat all outliers.
I’m in my eigth year since diagnosis. The drugs (Stalevo, Pipexus, Xadago and Madopar) are still controlling my symptoms well. And I have DBS, which works for me… The cognitve damage I risked by the DBS operation has not manifested itself. I do have the occasional senior moment, but I am 72, and I’m no more forgetful than my husband who does not have PD.
I would be interested to hear the experiences of other people with a mutation of the GBA gene. Do the research findings match your experience of the disease?
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