This has been shared before, but I believe it is worth sharing again. Despite all the hard work of brilliant scientists, we PwP are stuck with the notion that we will only get progressively worse and that any medication will only temporarily help with symptoms. The "gold standard " for treatment (Levodopa Carbidopa) is virtually the same now as it was FIFTY years ago.
Given our inability to make truly major progress (cure or at least slowing progression), shouldn't we at least consider the possibility that the experts are wrong. Maybe our focus on the death of dopinergic neurons and/or alpha synuclein is misplaced. Maybe the whole theory of inevitable neuro degeneration is similarly misplaced.
I believe Dr. Daniel Jeanmonod and his team at SoniModul may be on the right track by thinking outside the box AND putting those thoughts into brilliant success with at least three members of this forum and many other people with Parkinson’s. Here's a paper from 2013 for you to consider. I have copied the first couple of paragraphs, but there's also a link to the entire paper.
Prof. Dr. Med D. Jeanmonod, 2013
"The classical message today about Parkinson’s disease (PD) is that it is a "neurodegenerative“ progressive disease.
Neurosurgery can only reduce its symptoms, but not stop its progression.
I would like to make here a series of points questioning some established ideas about this disease, to test if we are facing scientific facts or dogmas.
One, the neurodegeneration severe emotional load for the patients, a sort of Damocles sword hanging over their heads and threatening the essence of what they are.
Secondly, the idea that neurosurgical interventions can only be symptomatic has also to be reconsidered."
The severe emotional load, on PWP is downplayed, in many ways, and by different types of people, in my opinion. It has been my experience, over the last dozen, or so, years, that a lack of empathy, and understanding, by some professional care givers, and others, who are judgement prone, in their attitude, toward my Parkinson’s problems, has calloused my belief in their caring and showing concern, for my well-being! I have seen their attitudes, toward other PWP, and other PWP are similarly affected. As a result, I have tried to figure out why this attitude is so prevalent. One of the more aggravating aspects of having PD, is that, with many, there seems to be inconsistencies with symptom severity, from day to day. Even with Carbo-Levodopa medicine, and other PD medicines, taken at regular intervals, as prescribed, by medical providers, there is no guarantee, that symptoms will get better, and stay consistently better. So, like, in my case, some days I experience severe Bradykinesia, for a period of time, and I’ll see the health care provider, and it is obvious that stiffness, gait, walking is a problem, for me. Then, I’ll come back, perhaps, in six months, for another appointment, and, even though I’ve followed the exact same routine, in regards to medicine dosage, time of day, etc. I will have good movement, with walking, tremor, stiffness etc, and there will be little evidence of anything wrong. So, the health care provider checks me out, and says, “Well, you seem to relatively stable, so, we’ll see you next year! Then, a week later, I have times when I feel so stiff, I can hardly lift my leg high enough to get in my car! It’s like having a fickle ailment, one where some people think people exaggerate, or fake their symptoms. Actually, with me, I don’t fake symptoms, or complain much. It is what it is, and, generally, the people who truly understand the best, are people who have been diagnosed, with Parkinson’s, like so many wonderful people who participate in this forum! Many people with the disease go through the same thing, I go through, frequently, too. I’ve had medicine adjustments, to help eliminate off times, but, overall, consistency of being without symptoms, is not there! So, I consider it a fickle disease. I wonder how many PWP feel the same way, as I do, about dealing with, and living with a diagnosis, of having Parkinson’s Disease! I’ll continue stretching and exercising and taking Carbo/Levodopa this year, and hope for less frustrating sessions, with health care providers! Happy New Year, to all, in the Parkinson’s Community!
I quite agree with you about the way PwP are treated by the community as well as health care practitioners. Our previous Neurologist always used to say to my husband when attending an appointment ‘you look under dosed’ to which my husband would reply, if I put up the C/L dose the dyskinesia is awful. Apart from trying to give him other meds which he never explained about we changed practitioner when we felt he was unhelpful and so negative.Friends who are close too us are used to seeing the symptoms and difficulties PD presents and are in admiration of the way he is in public. They don’t see the everyday struggles and difficulties that he has.
We even had people think he had Alzheimer’s when saying the dx is PD they really don’t understand this condition.
You are so right! Thanks for your comment, and understanding! Everyday struggles and difficulties, can be very challenging, and having an understanding person, who is empathetic, is worth it’s weight in gold, to a person stricken with neurodegenerative diseases, such as PD!
Thanks laglag! It sure makes my day, to know that there are some people, who truly understand what I go through, having been diagnosed with Parkinson’s!
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