How I Bounced Back After Parkinson’s Diagnosis to Make US National Rowing Team, by Todd VogtRead More
By Stefania Lungu, contributing author and person with Parkinson’s Disease.
“I am 66 years old and this is my story. I strongly believe that almost all major illnesses have deep roots in some traumas/shocks we have at certain moments of our lives, which we were not able to “digest”. All my emotional traumas are related to members of my family. My first shock was back in 1994, when I was alone with a little child to raise. Knock-knock, depression installed itself immediately and I was not able to recognize it and give it a proper treatment. I was very angry, and afraid that I would not be able to cope with all my problems. Yet, in all the critical moments of my life, I received from seemingly nowhere some help from ”above”, and somehow I managed to solve step by step the problems which arose, even when I remained jobless in 2000, and by miracle an old tennis friend helped me to find a new job in a bank, that help restore confidence in myself.”Read More
When the ambulance arrived, the paramedics were sympathetic and could immediately see I was indeed in a terrible state. They agreed things were so bad that I needed to go Accident & Emergency (A&E, the equivalent of the ER in North America) with them immediately.Read More
The contrast to two years ago is quite stark. Back then I was literally near-Death and dying fast. Then, in my Death Feigning or "off" state, I would be in a much deeper Freeze, with more "rigor mortis" (rigidity). I was literally a zombie. Now I am much more functional - half-alive instead of near-dead - while symptomatic, unless having a really bad day. Even when the drugs switched me on, back then, it was not into full Aliveness, but into another half-dead, unfeeling, empty state - that of permanent Fight-Flight which I had pre-existed all in my life. Moreover, I was taking so many drugs that my movement (and emotions) were uncontrolled, I would go over to a state of dyskinesia which could be worse than the symptoms. Some of the drugs (ropenirole) I was on then actually made my Fight-Flight much, much worse than before.Read More
Perhaps it would be instructive at this point, therefore to describe more about what its like when I am very symptomatic, to help understanding of why I believe this disease truly corresponds to Death Feigning, and why the converse - increase Aliveness - is the key route to healing. In Death Feigning, not only movement is switched off, but as are all signals through which the keen sense of predators might detect some vestigial signs of life. To me, this describes exactly how it is when I am symptomatic - if I don't implement strategies to combat this state and just allow it to take over - and the more symptomatic I am, the more pronounced these experiences:Read More
As for many people with young onset forms of Parkinson's Disease, my diagnosis was given the label "Idiopathic". This term, Idiopathic, is used to denote any disease or condition which arises spontaneously or for which the cause is unknown. This diagnosis was wholly unsatisfactory to me, as I'm a person who needs to know the "why" of things.Read More
Over recent years, it has become very clear that there are a number of things which people with Parkinson's Disease (PwP) can proactively do, or not do, to mitigate their symptoms. Likewise, there are many lifestyle choices which are now known to aggravate and worsen the symptoms on a day-to-day basis. Longer term, these choices have been shown to either slow or increase the rate of progression. The evidence has come both from the science base and from the statistically relevant, aggregated shared real life experiences of people affected by PD around the world, via social media.Read More
The purpose of this article is to review the outcomes from employing the pragmatic solutions, covered on this website, for working towards progressive symptom reduction of Parkinson's Disease. In particular, I discuss the outcomes of the persistent practical applications on myself, and demonstrate the improvement through the records of my Video Diary.Read More
While most people will be familiar with the external, physically manifest symptoms of PD, very few have a good grasp of these internal, hidden states, and so don't realize that people with Parkinson's (PwP) are also frozen, rigid and trembling on the inside too. Having engaged with very many PwP around the world, I've learned that there are common personality types, and we tend to have shared, overarching themes of internal emotional states. In particular, I've found that many of us can be described as high achievers, but are wracked with self-doubt and guilt on the inside. This finding appears to especially true in the cohort of PwP who eventually end up with a rigidity dominant form of Early Onset Parkinson's Disease.Read More
I hope that my experience might be a catalyst for change, because, in speaking with a significant network of people with PD around the world, there are many with diagnosis and aftercare treatment experiences even poorer than my own. I feel, therefore, we do need an overhaul of how the healthcare diagnoses and treat people with Parkinson's. Simply stated, the current experience of too many PwP (People with Parkinson's) is that they are prescribed drugs as a singular treatment pathway and given a narrative of hopelessness at diagnosis.
There is a beast inside me. The beast is not my Parkinson's illness. The beast is myself. Parkinson's is just the empty cage. Let me explain, because although this is difficult reading, I believe it is important to share this epiphany.Read More