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    • #19254
      Ally
      Keymaster

      Do you have any questions about mannitol, the artificial sweetener that could be a game changer for people with Parkinson’s? (You can read more about mannitol here.)

      On Tuesday, September 1 at 11am ET, we’re doing an Instagram Live with three of the people featured in the documentary about mannitol, My Disease, Our Revolution. We’ll be talking to Daniel Segal, PhD,who has done pre-clinical research on mannitol; Danny Vesely, a patient advocate for mannitol; and Amir Sadeh, the CEO and co-founder of CliniCrowd, which is trying to bring mannitol to the masses.

      If you have any questions or comments for Daniel, Danny and/or Amir, be sure to leave them below so we can ask them in our chat! You can also follow @parkinsonsnews on Instagram and ask your questions live during the interview.

      • This topic was modified 1 month, 3 weeks ago by Ally.
    • #19262
      Skip Shaputnic
      Participant

      Will the Instagram Live content be available for viewing after the live event?

    • #19269
      Ally
      Keymaster

      Hi Skip, yes, we will be posting it on YouTube and also creating a podcast from the audio! ūüôā

    • #19293
      Jean Mellano
      Participant

      I am sorry I missed it. ¬†I have been using mannitol for a month now, no changes in symptoms. ūüôĀ

    • #19297
      Kathy Bettles
      Participant

      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

    • #19300
      Ally
      Keymaster

      Hi Kathy, I will definitely let you know when the YouTube video is up! CliniCrowd is definitely still operational and when I spoke to Amir, the CEO, earlier this week he was very encouraging of patients getting involved in their work. I will send him an email and ask him who you should reach out to about your registration. ūüôā

    • #19302
      Beth T Browne
      Participant

      I am 83 and was just diagnoised in July of this year.  My MRI showed my problem was lack of dopamine.  I have had shaking in my hand, and a slight balance problem, but my walking is not a big problem right now.  I had a lot of nausea on the dopamine meds, and the doctor took me off.  I think I may have had this disease a year ago.  I am concerned in that I can’t do well on the meds for Dopemine.  Is this mannitol something that I might try?  Do I need to ask the doctor?  I would have no idea how much to take or how often.

    • #19308
      Jo
      Participant

      Hi

      I would like to start my brother with Mannitol, only symptoms are shaky hands so far.

      How much, are there different strengths and with food I presume?

      Thank you, keep safe everyone.

    • #19314
      Christine
      Participant

      Hi,

      I signed up on Clinicrowd and started mannitol about 1 month ago. I find their website a bit confusing to navigate, but did figure out a dosage for my body weight. Although the mannitol does seem to make me feel bloated (especially the first few weeks), overall I’ve been feeling quite good, in fact I had a tremor free day about 2 weeks ago. That was huge for me, and even my husband and a few friends noticed. Here’s the thing though, I started the mannitol at the same time I got back to ‘in person’ Rock Steady Boxing. I love boxing and it always makes me feel better, so I really am not sure if my current status is because of the mannitol or the boxing! Whatever it is, I’m feeling good!

    • #19315
      Jean Mellano
      Participant

      Christine, I agree with you, the website is not user friendly.¬† I too suffer from bloat and have been taking mannitol since end of july.¬† i dont see any results yet; i dont have tremors but my bradykinesia is terrible and i also have balance, swallowing and speech issues.¬† ¬†I still believe RSB is the best symptom reliever, progression slower there is for us.¬† ¬†i had to stop RSB in May this year since I injured myself while biking and my symptoms have gotten worse ūüôĀ¬† ¬†i am glad mannitol may be helping you.

    • #19316
      Jean Mellano
      Participant

      beth, you beed to create a userid at https://clinicrowd.info/     once you do, you will have access to more info about mannitol.  always check with your doctor before adding any supplements to  your regimen

    • #19317
      Jean Mellano
      Participant

      hi jo

      you need to create a userid at https://clinicrowd.info/ . once you kigin, you will have access to additional info on mannitol

    • #19324
      Jan
      Participant

      I registered on clinicrowd a while back but didn’t find any solid direction as to how much mannitol to take. Their info mentioned how much a person weighing 154 lbs or 198 lbs should take, and it also says to “see detailed table below” but I was unable to view a detailed table. I’ve been taking a tablespoon daily (in 2 divided doses of 1/2 tbsp each) for about a month now and have not noticed any change in my PD symptoms. Perhaps I should try increasing the dose. I was really hoping there would be a detailed table on clinicrowd to provide more guidance. I’m also interested in viewing a recording of the Instagram Live discussion, as I learned about it only after it took place.

    • #19326
      Ally
      Keymaster

      Hi everyone, I’ve reached out to Amir at CliniCrowd but I haven’t heard anything back. I will keep you posted. The feedback being shared in this forum will certainly be helpful to them as they continue to improve the patient experience on their website and in their research efforts. Thanks for sharing!

    • #19330
      Fran
      Participant

      I signed up at Clinicrowd for my husband but couldn’t find the page with how much to take for weight.  I also sent messages on the site and have not received any responses.

       

      looking forward to finding out how to make it work

    • #19331
      Daniel Best
      Participant

      I’ve been taking about 15 grams/day for a month (Clinicrowd recommended 10g/day for my 170lbs). Like with any supplements its hard to know if its helping.¬† But 10g is not very much (a spoonful), it dissolves easily in a small glass of water, doesn’t taste bad, and is inexpensive.¬† So I plan to stick with it for at least six months and see.

    • #19333
      Lou Hevly
      Participant

      I’ve been taking 7-10 grams a day (weight: 160, height 5’11) for about a month. One of my symptoms, cog-wheeling in my left shoulder, and associated discomfort when reaching up and out for something, or when flapping out a sheet when making the bed, seems to be less annoying than usual. I dissolve it in a glass of kombucha; perhaps¬† if I took it with water the effect would be less? Who knows? I’ll post back in a couple months with a progress report.

    • #19375
      Deborah McDonald
      Participant

      I have just registered with Clinicrowd and navigated their webpage. I have had Parkinson‚Äôs for three years and am on Madopar 500 mg a day (similar to sinemet) which is working quite well. In fact very well for slowness and rigidity. So I have my mannitol which arrived for days ago. I‚Äôm sure I must be imagining it but I have had more energy since starting it. We’ll have to see. I have heard they have had a large number of patient drop out. I wonder why? My personal feelings at the moment are that the website is so difficult to navigate that many drop out. I see others have mentioned this problem here. Can a message be sent them to try to improve it? I‚Äôm not really sure what I‚Äôm meant to do next. How often do you report back? Do they contact me? All this is unclear. Looking forward to joining this discussion. This is my first ever forum posting.

    • #19451
      Kathy Bettles
      Participant

      Hi. I hope to hear soon about the follow up taped video to the “My Disease, Our Revolution” documentary on Instagram Live. ¬†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.

       

       

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