This post is just a few thoughts I'm throwing out there, questioning how we might be sabotaging our own progress back to health without realising it.
Were you told you would degenerate? How much are your expectations affecting your condition?
Has your doctor said to you that you will need to increase your medication over time? Are you focusing on whether you have signs that you need to increase meds yet?
When you wake in the morning, what are your expectations of how you will cope with the day and how is that affecting how you do?
We all know of the power of placebo. How much are we allowing nocebo to affect us?
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Dap1948
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Yes, I agree. I have not bought into this message. I used to be on 9 25/100 Sinemet but am now taking 2 1/2 and doing well. I walk everyday rain or shine, do Quigong exercises, dance and sing as much as possible and drink a glass of my homemade Kombucha daily. Diagnosed in 2010. Fighting PD is a great deal mental by keeping positive.
I totally agree. Doctors are not fortune tellers and Western medicine has not come up with a cure for PD. Living well for me involves self care: physical, emotional and spiritual. Stay away from the news, junk food, negativity from all sources. Exercise a lot, rest when you need to, vary the routine. Get outside, listen to music, connect with loved ones, let go of resentments, stay in the day. I do take the Sinemet and rasagiline and keep up with other medical providers. I remind myself of my many blessings every single day.
Hi Dap, this is a really good point. I know I will get worse and that I’ll need more medication. But every day I wake up with a focus on something, whether Parkinson’s or not, which helps me not to decline today. I’m determined to keep the decline as shallow as I possibly can. I guess I’m giving myself a placebo every day - it’s sure as hell better than a nocebo.
Remember there are quite a number of people who havent got worse, who have in fact got better. Which camp are you buying into in the long run? Your second sentence is quite definite!
I’ve not read of anyone who has got better. Lived a long time with mild symptoms, yes; but not better. In the long run, when new therapies are available, I’m convinced the disease progress will be stopped. Until then I’m being positive and doing everything I can for myself. And no nocebos.....
Hi Dap - thanks for the list. I read John Pepper's book a couple of years ago and looked up the rest. Of course, I don't know all the individual details, but there are some things that could be going on. First, the diagnosis of Parkinson's is notoriously inaccurate, with figures as low as 80% accuracy. Second, as we know only too well, it's a massively variable condition. Third, placebo responses can be very strong in Parkinson's (not a bad thing except in clinical trials). Even in the list above for example, Chris Lacey acknowledges he's an outlier, David Thompson has a positive DaTSCAN.
My big concern is that people take the example of unusual others and believe that if they follow what the outliers do, it'll work for them. In the case of John P, I buy the big walking and focus elements. I don't buy that I can do without medication for many years, even though clearly John can. Trying to go drug free with Qiqong certainly won't be for everyone. It's because these stories appear to be very rare that they should be taken sceptically.
Do you know if there have been any cases of cure/total recovery published in peer-reviewed scientific literature?
Where I do agree is on attitude. The more positive we are, and even if it doesn't change disease progression, the more we'll feel better about it.
There was the case of a chap, written up in a scientific journal, who recovered. They put it down to his doing meditation. I think he lived with monks, though I don't think he was a monk. Sorry I havent more information!
I have been doing the John Pepper walking for nearly four years now. I swapped half my ldopa drugs for mucuna but still have 200mg ldopa a day in total, so no reduction in dosage yet! However my gait is now normal and i no longer have any rigidity. The improvement could have been due to the walking, or because I now walk to music or because I changed to mucuna or just because I'm getting better! Mind you I also now do yoga, so has that helped?! I think what I query is the way these recovered people identify the specific cause of their recovery. Who ever knows what has helped?! I'm certain that what helps one mightn't help another.
Your post is exactly what I needed to hear at this point in my journey. I'm going to stop believing that there is no cure and I'm going to do the necessary work to help make that happen. I'm just now looking into the role the vagus nerve plays in regaining health.
Always remembering that J Pepper took sinemet and Amantadine for two years then stopped becase they did NOT make any difference. He went on to Selegiine and THEN he started fast walking.
So coming off all meds really means coming off one. Did that one med work for him because it has a mild effect on Parkinsons or because it is also an antidepressant and John was depressed when he began his walking programme?
Daph you ask elsewhere about JP’s tremor/ drug treatment but it is relevant here too. He changes his story, there is a before and after Doidges book is published
Only in 1992, when I started to shuffle, did my doctor send me to a physician, who sent me to a neurologist, who diagnosed Pd. He prescribed a monotherapy of Eldepryl. At that stage I stopped taking all the other drugs I had been taking, for all the previous symptoms.
I had also been taking blood pressure tablets at the time of diagnosis, which I have continued to take.
Other than doing regular energetic exercise and getting rid of the major causes of stress in my life, I only took Eldepryl, except for three months in 2002, when my neurlogist said I should start taking sinamet.
Because I had got most of my movement symptoms under control, at that time, and because the sinamet did nothing for me, I stopped taking it, after three months. I also stopped going to that neurologist, or any others, since then, for my Pd.
In 2003, after writing a book about my experiences, I visited another neurologist, because in my book I said that, 'Nobody would ever know that I still have Pd", and I wanted to put that to the test. I told him about my book and asked him if he thought I had Pd? His response was one of anger! He said I did not have Pd, Therefore I never had Pd. What I had was Parkinsonism, whatever that means, and he told me to stop taking the Eldepryl! I stopped taking the Eldepryl and have been off any Pd medication ever since.
The story changed to this
You will find in my book that for the first two years after diagnosis I increased my gym classes to 90 minutes every day, six days of the week, plus, I took sinemet and symmetrel. As my Pd got much worse under that regimen I stopped and my late wife begged me to do the fast walking, ...
I came off the sinemet and symmetrel and went onto an MAOb inhibitor and started the fast walking. Within four months my condition started to improve and had not stopped doing so ever since.
Again the sinemet obviously had no effect. The story is changed because Doidge who read JP’s notes told JP it was this way. JP did not see the notes.
What I also find very curious is the inconsistency about having to learn to walk again. For someone who had worked out regularly for many years then increased to it to 90 mins/day of gym workout it is most odd that he would have such difficulty walking at such an early stage.
John genuinely believes in what he says and he convinces others. The newly diagnosed with very little knowledge of PD are particularly susceptible. You will note he has no public endorsement from a neuro. He has a nack of divert questions and putting blame on the questioner for ever doubting him. And he taps into peoples fears particularly big pharma.
If Sinemet does not work, at all, to relieve symptoms of Parkinson's in a patient, such as resting tremor, cogwheel rigidity, and muscle spasms and stiffness, then, would that mean, that there is the possibility, that perhaps, that patient does not have Parkinson's Disease, but may have another ailment? In my case, my movement disorders specialist, a neurologist, considered my positive response to carbo/levodopa ( Sinemet ), diagnostic for Parkinson's Disease. Sinemet relieved my very bothersome Parkinson's symptoms of resting tremor, rigidity, and muscle stiffness, and spasms, enabling me to walk better. My neurologist has never told me that I will degenerate. Also, he did not tell me, initially, that my medication would be increased over time; however, he has increased my Sinemet dosage, when my symptoms were progressing, and my off times were becoming too frequent. I guess reactions and treatment is variable, for each patient with a PD diagnosis, because each person's journey of living with PD, is different, sort of like, as an analogy, each and every snowflake is different.
Are you saying everyone’s PD is different? Yes but there are criteria for diagnosis which are never talked about on here for some reason though you have mentioned them.
Response to levadopa is considered diagnostic but not widely used for diagnosis. If one does not respond to levadopa it is likely that they dont have PD. I don't believe Sinemet works on essential tremor which anyway is not the tremor of PD despite what people may want to believe. They may have both but only resting tremor (which JP does not have ) is used in diagnosis.
Great post. Read Dr. Joe Dispenza's You are the Placebo and then his other books. Fascinating. Healing through very specific meditations (NOT the soothing, relaxation kind). Including several PD people. Also read Bruce LIpton's Biology of Belief. Our minds are very powerful.
This is so good to hear! Recently, I cut back on doses of generic Mirapex ER, generic Azilect, and Rytary. Feeling so much better! I finally learned that I had to work at nutrition first. I made changes in my diet affecting constipation and blood pressure. If the dose of a drug causes low blood pressure, it is too easy to add another drug instead of changing diet or behavior. Same for constipation. Drinking twice as much water as I want, eating fruits and vegetables, and “working out” whether it is stretching, walking, or crawling is working for me. Especially with levodopa, not eating 45 minutes before or after taking it helps more than taking more of the drug. Also, women and men digest differently and require different doses. The “chart” for dosing doesn’t always take this into consideration.
Low blood presssure meant too much Azilect for me. Swollen ankles meant too much Mirapex for me. Good luck finding the right doses. Thank you for your post. I try to Think Up.
I read “you are the Placebo” by Dr. joe Dispenza then took his online Progressive Workshop for $299.00 and I’ve gotten much better over the past 3 months. Gait near normal and tremor relatively gone. It’s been the best thing since B1 which removed many non motor symptoms.
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What if we are approaching this all wrong?
Why don't we have a cure yet? What are we paying the drug companies for anyway?
2 am crowd...Could it be that we are lucky to have pd? advanced pd suggestions.
