March 9, 2021 at 8:08 pm #20354AllyKeymaster
Have you heard of PS128? It’s a probiotic which, according to a small study, may ease symptoms of Parkinson’s disease when used as an add-on treatment. You can learn more about it by listening to this flash briefing.
What do you think of this news? Have you tried or will you try PS128? If you’ve tried it, have you seen any results?
March 11, 2021 at 3:13 pm #20363DeniseParticipant
After reading the study I decided to order Solace which contains PS128. Just started it a few days ago so it’s too early to notice any effect. I didn’t have any negative effect so that is good.
March 11, 2021 at 7:00 pm #20365AllyKeymaster
Hi Denise, I hope you’ll keep us updated if you notice anything! 🙂
September 3, 2021 at 6:47 pm #21789Kathy BettlesParticipant
Hi Denise – any update on symptoms reduction since you have been taking Solace? Did you take it for three months?
September 13, 2021 at 10:20 am #21839Susan NelsonParticipant
I listened to Ally’s “flash briefing,” but I cannot find the complete study. Please let me know what it’s listed as and where I might find it. Thanks.
August 12, 2021 at 4:58 pm #21623RonaParticipant
I have been taking a probiotic VSL3# for a moth now and I think it has helped
September 7, 2021 at 10:03 am #21800Thomas RutschmanParticipant
I was diagnosed with Parkinsonism in 2010 and have tried a bunch of things besides the standard medicines. Nicotine patches like they do in France. Coenzyme Q10 like they do in the US.
I have been using Lactobacillus plantarum PS128. Since it is a living culture, you can make your own. So I make “yoghurt” and eat it for breakfast. I eat about 1 cup in the morning, but even though I have been doing it for several months I have to admit I miss some days. I can’t tell if it helps or not–so I will keep making my own, which means I don’t know the potency of what I am getting. I really do believe that the gut and the brain effect each other, so I am not giving up.
One reason I haven’t felt the need to take the PS128 regularly is that for me Mannitol has given me my life back. Just the other day I suddenly realized that my smelling had improved a lot… I had already noticed things like my hands swinging again when walking (I haven’t done that for ten years!); my wife commenting that my Poker-face was significantly better; my handwriting has gotten normal size again and I can actually read what I write! I feel a lot less stiff–so I have dared to go out into the forest to pick bilberries (living in Sweden where we have the right of public access, one can pick wild berried in any forest). I thought that activity was off the books for me since a year ago I tumbled while I picked berries, so I thought I would have to give it up.
I have been taking 1 teaspoon a day of Mannitol for 10 months now. It took awhile for it to work, but even though the experts say there is no cure for Parkinson’s, this sure reduces the symptoms.
Good luck with the PS128!
September 7, 2021 at 7:01 pm #21805Charles H LevinParticipant
Thanks for posting this study … I will try Solace … the data seems compelling …
Re: Mannitol … After reading a spirited chat forum about it a few months ago (and following it for longer), I started using it … I began with a 1/4 teaspoon and worked my way up to 2 1/2 teaspoons in about three weeks … I based that dose on info I found on an Israeli broadcast news report with the scientists behind the original study …
I believe it is helping to ease my tremor and reduce some of the slowness … I experienced some changes in about two weeks, which continued to show improvements since … I feel a lot more comfortable moving … almost like my old self again … However, I don’t think this will work for everyone … if you try it, be patient …
I am using Bulk Supplements, which I found on Amazon … I’m eager to hear others’ thoughts and experiences on both of these …
September 14, 2021 at 3:20 am #21840Thomas RutschmanParticipant
Thank you Charles for sharing about how Mannitol helps you. I just came back from a trip to see a daughter and her family, and I forgot to take my Mannitol along. I was gone five days without the positive effects of Mannitol disappearing. Which tells me there has been some major repair-work in my brain, cleaning out the Lewy body clumps and reversing some of the damage done. I don’t know for sure, but it has clearly been helpful for me.
September 3, 2021 at 6:49 pm #21790Kathy BettlesParticipant
There have been much discussion about Mannitol on these forums. Maybe they can be reposted? My husband has taken for over a year. It has definitely helped but balance benefit seems to be gone. It continues to help masking.
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