This is a short story about two men in their early 50’s, diagnosed with Parkinson’s, who after the initial shock quickly realised that sitting back and just taking their prescribed medication was not their solution, a tale that is familiar with a growing number of PwP.
Mark is a property professional and entrepreneur who has always been physically active, playing squash and skiing for years. In 2014, he and his wife noticed a change in his walking gait and stiffness in his left arm swing, along with left hand thumb twitches. Referral to his GP led to a neurologist who delivered a swift and blunt diagnosis of “You have Parkinson’s, take Sinemet and come back in 12 months”!
Michel was the successful CEO of one of the world’s largest financial brokers, who noticed difficulties in typing and writing which led to a GP consultation and referral to a neurologist where he was told, in no uncertain terms, that “he had Parkinson’s disease, an incurable, degenerative disorder causing a multitude of symptoms”. “Walking back to the office that day felt the same as walking home on 9/11” said Michel” everything around me moved in slow motion and I knew that my world would never be the same again”.
Mark and Michel reacted in the same way, both unhappy with their neurologist’s lack of interest in what else might help them and, feeling that there was more to be done than accepting their fate, so began researching for other solutions. This led them to specialists in Nutrition for PD, Dr Geoffrey and Lucille Leader. Covid had begun so the consults were done via Zoom, where they met, soon realising that they had the same outlook, that there is more to PD than simply taking Meds and that there is a big place for exercise (particularly high intensity), nutrition and mindfulness (Meditation, Yoga, Qi Gong, Tai Chi etc). So they formed a simple WhatsApp group to share information on what they learned and to give each other moral support, as PD can often be a lonely place and talking to others going through the same can really help.
The group grew as other PwP and carers heard about it, until it needed a better platform. So, on an app called Slack the group “No Silver Bullet “was formed, a name to reflect the absence of a single solution for the variety of symptoms that we all get. No Silver Bullet (“NSB”) has a simple goal- to provide a place where PwP, carers and PD Professionals alike can share information, questions or concerns in a supporting, friendly, casual and very accessible environment that just feels like a group of friends chatting, all of which happen to have a non-curable neurological disease…
Along with a platform to post on, NSB hosts bi-monthly zoom chats. Once a month is typically an informal chat, no real agenda other than what people have on their minds. The other is now a more formal session with speakers talking to the group on topics that interest the members. So far this year it includes topics on new emerging technologies (Charconeurotech’s CUE1 device and MedEngines new watch app), the importance in PD of mitochondria and cell energy, meditation, high dose thiamine, red light therapy, a motivational chat by Jimmy Choi, symptoms in PD and how they change as PD develops, breathing and speech in PD, to name a few.
Next speaker is Joy Milne on 18th Oct, the lady who amazed scientists with her ability to smell Parkinson’s on people, and how she is now working with scientists on technology to enhance this.
All are welcome to join the free sessions or indeed the group, just email NSB for more information nosilverbullet4pd@gmail.com
You can follow them on Instagram @nosilverbullet4pd or see previous recorded sessions on their YouTube channel https://www.youtube.com/channel/UCN2A0vGOY6j13Ed1rV64gPQ If interested both Mark and Michel’s full stories can be found here:-
Mark: – https://charconeurotech.com/his-bespoke-parkinsons-marks-story/