While perusing threads in our Parkinson's support groups, I'm increasingly confused. Maybe you can help me out?
It was suggested this monster of a disease could be contained with DoTerra Oils, special teas or supplements. At the risk of sounding cynical and possibly suspicious, I've tried EVERYTHING and simply do not believe these impassioned proclamations. That doesn’t mean I think anyone is lying, but you can’t heal PD with spit and Vitamin D with peppermint oil. Sounds like some folks are promoting the ideas of halting the progression of Parkinson's using baking soda, vitamin C, extra hydration and a rubber band (MacGyver?) SO, the equivalent of holding an umbrella in a nuclear holocaust.
Forgive me for sounding frustrated. Indeed I am.
Perhaps we aren't talking about the same condition, as I've been using the same oils for years... to relax, soothe light ailments and make my home and cars smell like an ashram. Om shanti, all you self-professed goddesses and alchemists! But as a "cure"? Do we need a disclaimer: WHAT ARE YOU SELLING? Please refrain from singing the praises of any specific product(s) here, unless you can offer confirmed and unbiased scientific information.
Of course I still believe in magic and have an infinite and fierce faith, I just don't want to be teased by glittering cures that end up being time-consuming and extremely expensive.
At first it appeared that someone was joining support groups to push product, but in the interest of a cohesive community and with the assumption of transparency, I remain sincerely curious about exactly how topical oils (however pure or Mormon) might treat or prevent the progression of a neurologic disease. I never finished my medical degree and remain grossly unqualified to propose a clinical trial on what works by the numbers.
When do you suppose Parkinson's will be divided into more distinct subcategories?
How is it possible to function without medication or DBS for so long after dx?
In addition to working out like an animal, but not quite as hard as our Ninja Warriors, I've tried everything (diet, cannabis, alternative healers, every known therapy, shaman...). Many treatments balance the system and bring relief, but nothing has slowed the progression of this beast with exception of constant physical activity and an avalanche of compassion.
I've spent obnoxious amounts of money on alternative treatments and products, but I can no longer afford the randomness. I'm tired of chasing the latest supplements and devices and modalities. This has become a Hobson's choice.
It would be an understatement to call this condition we are subjected to cruel. The fact that it isn't always obvious I sound like a blessing but causes miscommunication and confusion with people who do not understand it's furious death grip. For non-parkie judge and jury: If I'm standing upright, smiling, breathing and my shoes match, leave me the f alone, OK?
The uneducated and unaware non-PD judges who choose to remain blissfully unaware of how much strength it took for me to get here have been unkind. Ignoring medical information and the fact that not everyone is having the same experience gets us nowhere, and I am always on the hunt for more information. Hence my question on grouping PD a bit differently.
I've only known a few cases of misdiagnosis and this is not questioning anyone's experience, it's just that without consistent medication, I simply cannot move. Most PwP seem to fall into this category. When I go dancing I take a little extra and often pay the price, but it's worth 4-5 glorious hours of relative fluidity.
It's easy to relate emotionally to our international community, as chronic pain dismantles even the brightest and disciplined stars among us. While listening to others enduring the isolation of this condition, I realized it's the non-motor symptoms that are most relatable. We all seem a bit traumatized by our own unpredictable nightmares, and we take turns carrying one another.
A bit awkwardly perhaps, as we are in many ways an International family of handicapped (but don't call us that!) seekers. No matter how depleted and despondent we become, our dogged quest for better treatment continues.
In recent history, I've barely been able to function due to extreme temps, grief, lack of motion, shoulder surgery... everything seems to affect Parkinson's. Without medication, my body would be a cage. How do you manage PD?