Kathy Bettles
Forum Replies Created
-
Yes, we are worried. I think any infection could be bad for Parkinsons. My HWP’s symptoms got much worse after having a sepsis infection. We have both already received our third vaccine. We wear masks in any indoor situation again.
-
Hi! My husband has been taking Mannitol for almost a year and it definitely helps him with masking and falling. We switched brands and those symptoms returned. We went back to the original we bought on Amazon (the cheapest one and has the words Kitchen Alchemy in the title) and those symptoms subsided. Other symptoms, such as freezing and weak voice, have gotten a bit worse, but we will take any help he can get. He started with a teaspoon and gradually worked up to 2 tablespoons a day – mixed in with juice/10 oz water mix.
I say give it a try. And please keep posting things that work for you. We live in the US and it seems that all they want to do is prescribe dopamine and exercise – which are important, but not always as miraculous as some make it sound. All the things being studied are taking SO LONG even though so much money is being invested. I am glad to see a new protocol being pursued on the UK to speed things up. And I appreciate Parkinsons News Today for being an invaluable resource for the PD community.
-
This reply is for Gwendolyn. Did you buy the unit from Photopharmics? It looks as though they are soon starting trials. I have signed up for information for my husband with them.  Your husband’s journey sounds similar to what we are experiencing. Mannitol has been wonderful with stopping falls but masking is creeping back. Also his voice is getting softer much more of the time, even with speech therapy. I am interested in trying your approach.
Thanks to all that post in these very helpful forums.
Kathy -
This disease is being studied world wide. I continue to hold out hope for one of the many stem cell studies. They seem to finally being tested in a small amount of humans. Dan Montano is finding a way to proceed with his research into what sounds like a reasonable therapy and so are many others. My HWP is having help at managing his symptoms with mannitol. There is so much happening right now. I am so thankful for this website that helps us keep up with current PD news without being overwhelmed. I refuse to believe we should give up.
-
Jack – I saw your reply after I had posted.
My hubby takes 10grams (1 tablespoon).
Good luck and stay safe all.
-
Just wanted to update. My husband (200 lbs) takes 1 tablespoon twice a day. He has been taking for almost 5 months. He has atypical PD, as he has no tremors and still has his sense of smell. Â Mannitol has really worked for him. His balance is restored, his sleeping is much better, his face is no longer masked, his arms swing when he walks. His voice is somewhat better. Â He still has issues associated with PD but overall this has been a miracle for us.
Will try again to join Clinicrowd and contact Amir Sadeh to say thank you!
-
-
Ally – is it okay if I tell the amount of mannitol my husband is taking? I would like to inform these folks but don’t want to do something not allowed on this forum. In the meantime I found an amount that sounded reasonable by poking around on the web and seeing what people were saying. HWP did start slowly and up the dose. Start slowly to see if your stomach has issues. My husband did not have any. He has been on mannitol for 6 weeks and we are so happy with the results. He is not falling (only 3 times since starting), his face has really softened, and I noticed his arms swinging when he walks. If this is placebo effect – bring it on!
We would love to sign up with Clinicrowd but I think I must have done something wrong and am blocked from the website – maybe you have a contact there that would allow me to sign up for my husband? In the meantime I hope this reply is helpful.
-
Thanks so much for posting the interview! It was a great follow up to the excellent documentary.
On Instagram Live Dr. Danny Segal gave an approximate dosage and Amir Sadeh said to join Clinicrowd to find out the proper amount. Dr. Segal also advised starting with small amounts and gradually increase the dosage.
-
Hi. I hope to hear soon about the follow up taped video to the “My Disease, Our Revolution” documentary on Instagram Live. Â Any news on that? Unfortunately I have been locked out of the Clinicrowd site (maybe I tried too often to get on) so cannot find out more information. The good news is that my husband has been taking Mannitol for a month (I figured out an approximate dose) and he has been really helped with falling. What a wonderful relief! Thanks for putting up this information. The documentary inspired us to give it a try and we would not have heard about it without Parkinson’s News.
-
Hi! Will you please let us know when we can see the YouTube of the event? Will it be found under My Disease, My Revolution? We greatly enjoyed the documentary.
Also, is Clinicrowd still operational? I am having trouble getting a response to my sign up.
Looking for information on how much mannitol to take daily.
Thank you.
Kathy
-
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.
-
Hi Denise – any update on symptoms reduction since you have been taking Solace? Did you take it for three months?
-
Hi – my husband has had good improvements in balance (although he still falls occasionally from freezing of his feet) and masking from Mannitol. He takes 2 tablespoons daily (we started with 2 tsp and slowly worked up). We purchase the mannitol from Amazon – it is the brand that says Kitchen Alchemy. Some brands do not work and his balance got worse and frequent falls returned. He noticed results very soon after starting this regimen. We put it in juice/water mix – about 10 ounces – every morning. He has been taking for a year now. It has not helped with his voice. Thank you everyone for telling about alternative treatments on this site.
Kathy
-
I would love to see your list. I don’t see why it couldn’t be posted here.
-
Hi Daniel – please look at my January 13 post that describes our experience with Mannitol. It has helped in so many ways. Just be sure and start with small amount and build up to avoid gastric response. I sincerely hope Mannitol helps you too!
-
Hi Jack – my husband has used two different ones – and they both seem to work the same. One is made by a company that says it is very pure and says it is for Parkinsons. The other is half the price and says it is for sweetening. I hope this helps. They probably won’t let me give the brand names here.