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Charles H Levin

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@chasives

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  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Is anyone out there taking methylene blue? in the forum Parkinson's Disease Medications 1 month ago

    This may be worth investigating more. But this study was published in 2008. Why have we not heard more about it since then? That raises some serious red flags for me.

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Temporary Weakness After Exercise in the forum Parkinson's Disease and exercise 5 months, 3 weeks ago

    Interesting … I’m not having that issue … I do about 35-40 mins on my elliptical, 30 of those minutes at 80-85 percent of my max heart rate … I monitor with an Apple Watch …

    What I have noticed after my workout is that my tremor is more pronounced and I can barely type for about 30 minutes… which is frustrating …

    I get fatigued on…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic The benefits of meditation in the forum Living ​With​ ​Parkinson's Disease 7 months, 1 week ago

    I meditate nearly every day. I’ve been doing it for 11 years, which is eight years before my official diagnosis (docs have credibly shown that my PD symptoms started in 2007 or earlier; it’s complicated) ….

    As for PD, I suspect that meditation helps to lower stress. Meditation is widely recognized in the healthcare community as beneficial. All…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic What's the most effective exercise routine for PD? in the forum Parkinson's Disease and exercise 8 months, 1 week ago

    I agree with most of these posts …

    Cardio … 4x a week … I use an elliptical and go 30 continuous minutes at 80-85 percent of my max heart rate … I monitor it with an Apple Watch … my doc (head of dept. at Cedars in LA) stressed this and hitting those numbers …

    Strength … 3x a week about 30 minutes … combination of TRX and…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Can exercise delay Parkinson's progression? in the forum Parkinson's Disease and exercise 9 months ago

    Don,

    I notice an increase in my tremor for a bit right after vigorous exercise (which I do religiously four days a week). But in the bigger picture, I would say that my tremor is barely noticeable most of the day … and I suspect the exercise (and meds) are the reason.

    cl

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Can exercise delay Parkinson's progression? in the forum Parkinson's Disease and exercise 9 months, 1 week ago

    I believe the answer is yes … This article mentions the study that my doctor has stressed to me … 30 continuous minutes at 80-85 percent of your max heart rate … I do this on an elliptical … it takes me about eight minutes to get into that zone … then I turn on my Apple Watch to make sure I stay there…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Can exercise delay Parkinson's progression? in the forum Parkinson's Disease and exercise 9 months, 1 week ago

    Don,

    I use an Apple Watch to monitor my heart rate on the elliptical … but the answer to the forum question is “Yes.”

    Can exercise help patients gain ground on Parkinson’s disease?   

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Anyone have comments on We Have Parkinsons.com in the forum Parkinson's Disease alternative treatments 9 months, 2 weeks ago

    I read the website and the research appears to be informed from documented studies. It appears that the most salient results are observed at about three months.

    My only skepticism is the question of the placebo effect, which basically causes your brain to produce dopamine. So I think it’s hard to know if it’s really working …

    That said, I’m,…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 10 months ago

    All …

    Here’s an interesting update on Mannitol and PD … As posted here, I, too, started using it in June and noticed (after about three or so weeks) a recognizable improvement … particularly in the slowness of muscle movement.

    I asked my neurologist about it a year ago and he dismissed it without offering an explanation. I just had my…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic How long have you known you have Parkinson's? in the forum Living ​With​ ​Parkinson's Disease 10 months, 1 week ago

    There are now numerous lawsuits wending their way through the courts, seeking to sue the manufacturers of paraquat. It is illegal in more than 50 countries but not the US. Two state lawmakers in California are introducing a bill to ban it. Senator Cory Booker and someone from the House are also sponsoring legislation to do the same.

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 10 months, 2 weeks ago

    I started taking it in June and it seems like I’m having some positive results. Mostly I notice less problems with “slowness of muscle movement” … Everything from walking up a flight of steps to typing … Possibly less brain fog, too …

    My tremor, still mild, in my left hand remains unchanged … and it’s starting to appear every so slightly…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Advice for newly diagnosed folks in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 2 weeks ago

    I’m so glad someone raised this question. When I was diagnosed in June 2019, my doctor at that time did not recommend much of anything. My symptoms were remarkably mild (long story behind this), and it would be another year before I started taking meds. However, over the course of several followups, I got the impression the doctor was trying to…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Probiotic could ease Parkinson's symptoms in the forum Parkinson's Disease alternative treatments 11 months, 1 week ago

    Greetings …

    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…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    For now, I’m taking both meds and Mannitol about 1-2 hours before breakfast … partially because you need to keep food away from Levadopa for at leat 30 minutes and also because my breakfast is a smoothie and I can’t operate the blender until my girlfriend is awake … lol …

    How long ago were you diagnosed? And how long after that did you…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    Hi Umakant …

    I take it with water in the morning, right after taking my Levadopa … From reading comments here and Amazon reviews, it may not affect symptoms immediately … some folks report waiting a month or longer … patience and persistence appear to be the key here …

    Which raises a question I forgot to put out there (and that I could…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    I just started taking it last week. I started with a quarter teaspoon for the first three days, then moved up to 3/4 teaspoon … a few days later, I tried half a teaspoon … at this dose, my stomach made all kinds of interesting sounds (some like a synthesizer keyboard) … no upset stomach problems, but I decided to tack back to 3/4 teaspoon…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    Beth,

    Exercise can not be discounted at all. My doctors now believe that regular cardio workouts three or four days a week (for more than 30 years) may have played a role in delaying a variety of symptoms … therefore delaying a complete diagnosis until I was about 12-13 years in.

    My doctor (quoting a widely revered study) challenged me to take…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    Correction to my last post … I apparently missed a critical sentence in the PNT article … but Mannitol has no problem crossing the blood-brain barrier …

    I will would like to continue hearing experiences here and whether anyone plans on registering with CliniCrowd …

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year, 1 month ago

    Thanks, Thomas, for posting … I am about 14-15 years in with PD but only diagnosed two years ago …. and, thankfully, still very mild symptoms (long story about that) … Meanwhile, I have been aware of the Mannitol discussion for some time … my doctor pooh-poohed it, but I remain curious and after reading these posts and an article I’m…[Read more]

  • Profile picture of Charles H Levin

    Charles H Levin replied to the topic Exciting PD research news? in the forum Parkinson’s Research News 1 year, 7 months ago

    I was recently tested for genetic mutations to see if I carry the lrrk2 gene; I do. This now means I’m eligible to be part of a study by Denali Therapeutics that seeks to repair that genetic defect (at least that’s how I understood my doctor’s explanation).

    I’m still unclear about other details as are the people at Cedars Sinai in LA who I’m…[Read more]

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