Thank you to Dr. Alberto Espay for his time and expertise on Monday night
He and his team are changing the way we look at PD and its treatment.
After all, we are all unique and have our own version of the disease so more targeted or "precision" medicine is recommended.
Dr. Espay explains perfectly where we are with research, how much we know about Parkinson's Disease but how little we know about the actual people with PD.
And he concludes with advice on what we can do ourselves to start changing the medical approach to target the unique individuals that we are.
The presentation inspired an excellent Q & A session and it was a joy to listen to this knowledgeable speaker.
So if you missed this presentation, or just want to watch it again to fully understand the potential of what was discussed, then to access our YouTube channel please click on this link to watch the recording.
Thank you for posting this update. We were registered for the presentation but weren’t able to listen to it live. I was looking forward to hearing Dr Espay talking about individualising treatment.
I have viewed the interview with the doctor and would like to raise a question that he did not answer.
If, as he proposes that we need to add more good protein to that which has been misfolded in the brain, how does that remove the misfolded proteins which are blocking the brain from functioning correctly?
If you have neurons dying, and you have the microglia not clearing the garbage in the brain that is building up, then the process of adding more protein will just cause more congesting in the brain; to put it in layman's terms.
He never discusses that we need to clear the brain of the junk (misfolded proteins) and then increase new ones. You can not put new oil in a car if you have not cleaned out the old oil first.
However, I like his approach of individual targeting of each patient in designing medication and or therapy to treat the diseases.
Thank you so much for the opportunity to watch Dr Espay’s presentation. It was fascinating and resonated with me on many levels. As my own understanding of PD and what ‘helps’ me has developed, I have realised that there is a huge gulf between what is available to me via mainstream medical practitioners in the UK and what I consider would benefit me most. Similarly with research: I was always an advocate of clinical trials and studies but was really disillusioned after taking part in a couple of research projects. In addition to really enjoying Dr Espay’s talk, it reinforced my own (tentative) views and has given me the confidence and knowledge, as a ‘mere’ patient, to stand up for what I believe in, even if it is not quite in line with mainstream thinking and treatment.
Also I recommend people check out the nosilverbullet4pd YouTube channel for other presentations, all excellent and thought provoking.
Thank you very much TanteJ for such positive feedback. I shared your message with Alberto who was delighted and encourages you to share your feedback more widely on social media so that more people watch the video and we get more patient engagement on this important topic.
I agree. Having said that, it helped me understand why so few trials are really successful and why there is such a wide variety of outcomes in the way we respond to all the things we do (medical or other). The patient is the puzzle and each/some of us has/have the opportunity to put together a protocol that will help our specific bioassay. This is an encouragement to experiment safely and try to find the right combination. Some building blocks are probably beneficial to all e.g. exercise and meditation.
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