Hi all. I am just joining the group. And I have just ordered my first mannitol and Zandopa from Amazon. I was diagnosed with PD in late Nov and quickly deteriorated with multiple symptoms to a point where I could not get up from a chair. I improved a lot since then by doing glutten/sugar free diet and taking black seed oil and other supplements which is managing the pain and improved cognitive aspects.
But still have tremors and movement difficulty. So I hope I will be able to see more improvements from all the wisdom in this community.
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JudithKenya
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Hi Judith. The biggest mistake most patients make is expecting medication to slow down the progression of Pd. It DOES NOT and NEVER HAS BEEN!!!
The only way any of us can slow down the progression of Pd, that I know of, is FAST WALKING.
If you don't want to walk fast then that is your choice. If you don't believe it, then all you have to do is start walking as fast as YOU CAN, for as long as you can, every second day and slowly increase the time you are able to do it until you are walking fast for one hour. Then stick to that time, but keep on walking faster, if you can.
If you have not noticed an improvement in your symptoms after six months, then stop doing it. If you never walked at a speed when you could only say two or three words in between breaths, then you were not walking fast and it would not have done anything for you.
Thanks John, I am still new to PD and cannot imagine it getting worse. Walking fast sounds doable, but it will take me forever to be able to do it for an hour😂
Hi Judith. If you look at my website - reverseparkinsons.net, and contact me, I will give you all the information on fast walking. You can start doing it for only one minute and slowly build it up to the one hour. I will GIVE YOU all the details and you can start straight away. I look forward to hearing from you.
"The biggest mistake most patients make is expecting medication to slow down the progression of Pd."
I see you making this type of statement again and again. It is not true. Maybe that is what the people in your country believe but they certainly don't in my country or in the UK in general. I think they are far better educated on their disease than you give them credit.
I only express my own beliefs, not those of others. There are few people around with as much actual experience of dealing with Pd in a non-medical way.
You are implying that medication DOES SLOW DOWN THE PROGRESSION OF PD. Do you have one single pies of proof of that?
Having personally turned my Pd around and having personally witnessed others turning theirs around, does not make me an ignoramus. It makes me a very small example of what can be achieved by fast walking. But because it is small, does not mean it is wrong, it means that it is possible,
It is not in the interests of the drugs industry to encourage Pd patients to find other non-medical solutions to dealing with Pd, and we can all understand that, but you appear to be one of the few who seems determined to Pooh Pooh what I am doing and saying. Do they pay you to do that?
Many more don't. Otherwise more of them would take another route, if they had been told this buy their neurologist!
My experience of having spoken to a large number of Pd patients has been that they were told they HAD TO TAKE THEIR MEDICATION AND THEY COULD NOT STOP!
Hi Judith, Amazon has changed its suppliers of Mannitol since I ordered it recently. I discovered it was coming out of China. Fortunately it didn’t arrive, so I got a refund. I’ve now sourced it here in Australia from the manufacturer. I’d be interested to know what you expect from taking it. My husband has lost his sense of taste, so I’m hoping it will help in that way. I think it may have helped him cognitively already, although we did change his magnesium and B12 as well.
If you haven’t already, have a look at the Syncolein site. See a video on the research and lots of info on the product. It can also act as a diuretic, so be careful. Keep us informed.
Hi Judith, like the vast majority of people with PD, why not get your doctor to prescribe levodopa (Sinemet or madopar)? Is it available and affordable in Kenya?
Also, if you can - exercise, exercise, exercise. It doesn’t really matter what form of exercise, as long as you get a bit breathless (and your doctor gives you the OK beforehand). Here’s a recent webinar from some experts on the subject youtu.be/qfGbxS_gKbI .
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