My journey so far with Parkinson's disease (PD). Aug/21
PD and Me at 72.
How long have I had PD,? Who knows?
I think everyone diagnosed asks the same question. To answer this question for me, was it when I had dry eye about 4 years ago, was it when I lost my sense of smell about 5 years ago, was it when I noticed a small tremor for the first time in my right thumb about 5 yrs ago. The answer is yes to all of them, other indications prior to my official diagnosis in 2019 were drooling, constipation, shoulder and back pains and I am sure more symptoms than those but I can't remember.
The single most frustrating thing about being diagnosed with PD is the sheer ignorance most of us have about this disease, I thought if I have a shaky hand, I can live with that, then a little research and one's whole world collapses..
While getting the results from my annual blood tests my MD suggested I make an appointment with a neurologist, she had a father with PD and was sure that was the cause of my tremor. Going forward from there was when the nightmare began, not with the diagnosis but firstly with the manner of how I was treated. In a nutshell,'' Mr B, you have Parkinson's disease, here is a prescription, Azalect, come back in 3 months and we will add another pill C/L to your prescription.''
I remember vividly sitting in the car park of the hospital wandering what had just happened, I was unaware I had just been told I had a degenerative brain disease with no known cure and very possibly will end up in a wheelchair with dementia . So, I filled the prescription, 3 months pills for 300 euros and went home, still completely ignorant of my diagnosis, with the intention of learning as much as I could as quickly as possible.
During the past 3 years a lot has happened, my learning about PD has involved, I could safely say, 2/3 hours a day, every day of research for months on end, still ongoing. Coming to terms with the fact that the pills I was taking were slowing me down, making me tired and sapping my energy and were doing nothing to slow down or stop my PD..I stopped all medication after 3 months and I have not been back to my neurologist since.
Learning from others around the world, groups, forums and universities has been my life since my diagnosis, trying many supplements, exorcise, special Keto diet, red light and changing routines, It is an ongoing situation, learning to cope with stress and trying to avoid it, a must for PD sufferers and drawing on the strength and support of those friends close to me on a day-to-day basis. This is a journey that if to be successful for me and in retaining my sanity cannot be done alone.
Looking back, I have learned not to be upset or embarrassed by things that happened to me in the past before I was aware of my PD. I wish all early-stage sufferers knew this, the attention deficit, the fact that the feeling of frustration and/or depression sometimes leads to one's mouth taking over control of one's brain and this can lead to unfortunate situations. I am lucky in that I largely have this under control but hold a certain resentment towards those who could have understood a little better and could have been more tolerant, I did not hide my diagnosis from anyone. This single piece of advice came from my MD and I continue to follow it. Trying to hide the disease can cause more damage through stress.
Where am I today? The disease is progressing, the fight is continuing, I think and I am sure my positive attack on PD is helping. I have tried to help other people like myself through my own FB support group locally as I feel I can offer some light to others and this has born some fruit..
What does the future hold?, A mystery, the disease will progress, how I respond and how it affects me? I feel I have a small amount of control over this, my constant learning routine keeps me up to date with all the trials going on around the world, the fact that a medication first used in the 1960;s is all we have today to help with symptoms is not encouraging but the rate at which PD is progressing around the globe is now bringing more people and pharmaceutical companies to become interested in serious research.
The above is a short history of my PD journey and on many sites, I have written in more detail some of the events, I hope this is some help and thank you for asking me to write this.
Written by
gregorio
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Thank you gregorio. That was so well written. I like that you did not go back to your neurologist. I don't really get the point of seeing a doctor that tells you up front they can't help you.
I have not been diagnosed with PD. I have been diagnosed with REM Sleep Behavior Disorder. A lot of doctors call it prodromal PD. Like you, my world collapsed and I spend hours a day trying to find a way to dodge this bullet.
Well there's nothing wrong with your mental state- you are sharp as a tack and write amazing- Thanks for describing your journey- I can relate to much of what you say!
Seeing that you are not a long way down the track yet; have you looked into doing fast walking. which is the ONLY WAY I know of rebversing the symptoms of Pd. Medications only hide the symptoms bit do not slow down or reverse the symptoms.
I have reversed many of my symptoms and have been Pd-medication-free for the past 20 years. Why not look into it? contact me, as many others have. I will send you copies of many other people's experiences of reversing their symptoms. It costs NOTHING!
Hi, my regime involves as much walking as I can, I play golf 3 times a weeka nd walk, go to the shops walking when I can, every chance. I am in the middle of moving house to be in a better area for walkin so I'm with you all the way, great to hear from you, what supplimentsdo you take. from the start I have taken B1, NADH, NAC and mucuna ,, adding and dropping many others.
Walking is not what I am talking about, I am talking about walking at your fastest possible rate, which does something in the brain to produce a natural chemical that repairs youm damaged brain cells. Talk to me and I will explain it to you. Have you seen ny videos and read all my materila on Pd? If not, Ill send it all to you
I inly take Vitamins B & C and Flavenoids, catotenoids and Omega 3.
When Covid took my food& beverage job away it also took my 12,000 step and fetch it away. So I got a spin bike to compensate. It helped but not as much as going back to work has. Now I’m up to 15,000 steps and try to increase the velocity. I don’t work everyday but even 4 days a week helps to hide the progression. Joey
I doubt if the steps you do have the same effect on the brain that fast walking has. I don't get anything out of encouraging you to walk FAST! It costs nothing and can be done anywgere you shose. Contact me and I will GIVE youall the information. If it does not help your Pd it will make you a lot fitter.
I've used a treadmill for 35 years, If I slow down I can feel my heels going over the rear rollers and I speed up a bit. It ends up being roughly 4MPH.
Hi John, I am so glad that you're doing well. I have a question for you, do you know approximately how many people have been helped by your method and they are still free of medication and have not succumbed to Parkinson's. Do you keep in touch with them? Thank you Mary
It is impossible to know any numbers because not everybody tells me what they are doing. I have a list of people wo have done well and if you contact me I will send it to you, It is quite a long list. I am johnpepper@telkomsa.net
Park_bear, based on your report, I went online to order some Ceylon cinnamon. However, each of the many product options had at least some buyer reviews about the product being adulterated (cut with sawdust or regular cinnamon), that I couldn't proceed with a purchase with confidence.
Would you please share your recommendation for a reliable source of Ceylon cinnamon?
Each of these has four percent one star reviews which I regard as an acceptable level. There will always be some dissatisfied customers. Ceylon cinnamon is much milder than the cassia cinnamon. The "sawdust" complaints may be coming from people who expected something like the cassia cinnamon.
It was those one-star reviews that spooked me. But I sometimes wonder if some are written by shills for a competitor. In any case, I like your explanation. And thanks for the update on products.
I buy Frontier brand from the bulk section of my local co-op. I have also bought sticks from my local reputable spice shop and ground them myself. I have to say that the fresh ground powder was different in color than the Frontier bulk powder. The spice store told me to always buy the sticks and grind when needed for best flavor. But who knows if the freshness also affects the compounds that are important for us.
Take care. Try also to get rid of the tiny amount of resentment you mention. Even traces of negative emotions can trigger symptoms any time:sciencedaily.com/releases/2...
Well done! How did you wean yourself to mucuna? What brand and form of mucuna ? I’m on 25/100 c/l three times a day. It doesn’t seem to be doing anything.I would like to try mucuna. Any suggestions would be greatly appreciated.
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