Oh how many times have we had this discussion in our house over the last 30 years; the double edged sword of media exposure for Parkinson’s and those living with it. We even featured ourselves on BBC East Midlands a few years ago (shout out to Rob Sissons, Health Correspondent) although the screen captions indicated I was married to the Parkinson’s UK Rep 🙄
Wholeheartedly agree and love the article, but am a bit concerned about the 5 year statement you end with on how long DBS lasts? I know the Parkinson's decline continues, but as this is very different for everyone in progressions, what is the 5 year based on?
Hi Jolanda - the remark about DBS only lasting five years was by Gillian Lacey-Solymar - she's sent me this reply:
Dear Jolanda
You are absolutely right to pull me up on that. I was told it by either my consultant or by the surgeon (I don’t remember which). To be fair, what they said was that it would last around 5 to 10 years (and in somewhat pessimistic mode I took the shorter of those two). However, it never stops working completely. I understand that one has a benefit from it even when things get pretty bad, however personally I have felt the pain return in the last year or two and I am six years since having had the operation.
You are right though - I should be more accurate in future.
All the best,
Gillian
PS, can I take the opportunity since I have you at the end of an email to ask whether you will come on April 11 and support the Parky charter? (I know this is a cheeky - I don’t even know whether you live in London or Cornwall!) but it would be fabulous if you could come…
PPS please excuse typos - this is dictated at 3500 m!
Thank you so much for your kind reply. I share your experience of fast decline and pretty severe dystonia, so I have just been added on the DBS waitlist, hence my shock of the 5 year prediction, but still I am confident that this is the best advanced solution. Of course, I understand the time it will benefit everyone is very personal and truly hope you can finetune and achieve some positive upturn still!
As for 11 April, I am going to be in the Hague with hopefully a huge crowd for our Pesticide-Friday, delivering our Call-to-action to the government to ban pesticides. I will definitely be following your Parky charter too, although I am based in the Netherlands, I am always looking for global initiatives, previous professional habit :)
Oh how many times have we had this discussion in our house over the last 30 years; the double edged sword of media exposure for Parkinson’s and those living with it. We even featured ourselves on BBC East Midlands a few years ago (shout out to Rob Sissons, Health Correspondent) although the screen captions indicated I was married to the Parkinson’s UK Rep 🙄
17 March 2025: Preclinical assessment of a ganglioside-targeted therapy for Parkinson’s disease with the first-in-class adaptive peptide AmyP53 - https://www.nature.com/articles/s41598-025-94148-1
Wholeheartedly agree and love the article, but am a bit concerned about the 5 year statement you end with on how long DBS lasts? I know the Parkinson's decline continues, but as this is very different for everyone in progressions, what is the 5 year based on?
Hi Jolanda - the remark about DBS only lasting five years was by Gillian Lacey-Solymar - she's sent me this reply:
Dear Jolanda
You are absolutely right to pull me up on that. I was told it by either my consultant or by the surgeon (I don’t remember which). To be fair, what they said was that it would last around 5 to 10 years (and in somewhat pessimistic mode I took the shorter of those two). However, it never stops working completely. I understand that one has a benefit from it even when things get pretty bad, however personally I have felt the pain return in the last year or two and I am six years since having had the operation.
You are right though - I should be more accurate in future.
All the best,
Gillian
PS, can I take the opportunity since I have you at the end of an email to ask whether you will come on April 11 and support the Parky charter? (I know this is a cheeky - I don’t even know whether you live in London or Cornwall!) but it would be fabulous if you could come…
PPS please excuse typos - this is dictated at 3500 m!
Thank you so much for your kind reply. I share your experience of fast decline and pretty severe dystonia, so I have just been added on the DBS waitlist, hence my shock of the 5 year prediction, but still I am confident that this is the best advanced solution. Of course, I understand the time it will benefit everyone is very personal and truly hope you can finetune and achieve some positive upturn still!
As for 11 April, I am going to be in the Hague with hopefully a huge crowd for our Pesticide-Friday, delivering our Call-to-action to the government to ban pesticides. I will definitely be following your Parky charter too, although I am based in the Netherlands, I am always looking for global initiatives, previous professional habit :)
Being cheeky too, www.pesticidevrij-dag.nl