Forum Replies Created

  • Daniel Best

    Member
    April 8, 2021 at 4:32 pm in reply to: Book Reccomendations

    I’ll add to the chorus of recommendations for Dr. Ahlskog’s book.  I’m impressed by the breadth of the medications he discusses in the book.

  • Daniel Best

    Member
    March 2, 2021 at 3:22 pm in reply to: Do or did any of your family members have Parkinsons?

    My dad had PD onset at 62, me at 59.  It makes me think of him all the time, and how little he complained.

  • Daniel Best

    Member
    January 26, 2021 at 2:19 pm in reply to: The power of perspective

    Taking a long walk is my last resort fall-back even though it can be hard to get out the door

  • Daniel Best

    Member
    January 21, 2021 at 3:16 pm in reply to: The long-awaited mannitol interview!

    Hi Kathy,

    When you say they both “seem to work the same,”  does that imply your husband is seeing results from mannitol?

  • Daniel Best

    Member
    January 5, 2021 at 2:55 pm in reply to: Best Advice for Recently Diagnosed Loved Ones

    Encourage him to exercise most if not all days of the week.  The higher the intensity the better.

  • My question is why not just go the prescription route for C/L?

  • Daniel Best

    Member
    December 22, 2020 at 2:54 pm in reply to: Why do you think Parkinsons patients have nightmares?

    My dad acted out violently in his sleep long before his PD diagnosis.  So I agree with the other responder that I don’t believe it’s the medication

  • Daniel Best

    Member
    November 27, 2020 at 8:10 am in reply to: Do you still have access to some form of exercise?

    With my gym closed and unable to run I find walking not enough.  But walking uphill is a different story…huff puff.  Fortunately I live at the base of a hill, 30 minutes of strenuous uphill chugging followed with pushups at the top and a nice cool-down walking back down.  Not as well rounded as the gym but more relaxing and feels like a real workout.

  • Daniel Best

    Member
    November 24, 2020 at 3:35 pm in reply to: Celebrities with PD

    Thanks for this, it’s nice to occasionally read something encouraging.  There was an American astronaut (can’t recall who, too lazy to look it up) missing from the list, so PD has been into outer space.  Maybe the reason the list is predominantly male is because men are more often struck by the disease?

  • Daniel Best

    Member
    October 9, 2020 at 3:14 pm in reply to: The long-awaited mannitol interview!

    I registered on their site and was recommended 10g/day for my 170lbs.  That’s about one big spoonful, goes great in a big mug of afternoon green tea.  It definitely causes some bloating but not bothersome.

  • Daniel Best

    Member
    October 6, 2020 at 2:16 pm in reply to: Butyric Acid and Niacin

    Could the results be due to any other medications?  Are you taking C/L etc?

  • Daniel Best

    Member
    September 29, 2020 at 4:49 pm in reply to: Butyric Acid and Niacin

    Hi Russ,

    Super-interesting information!  In addition to the butyric acid and niacin, are you taking any of the more standard PD medications?

  • Daniel Best

    Member
    September 24, 2020 at 3:39 pm in reply to: Mitigating Parkinson’s tremor

    My arm tremor gets a lot worse with stress and anxiety, alcohol helps, so I wonder if a beta blocker of some type would provide temporary relief.  Does anyone have any experience with them?

  • Daniel Best

    Member
    September 15, 2020 at 7:10 pm in reply to: Do you have theories about why you have Parkinsons?

    My dad had hernias, was bald, and developed Parkinsons around age 60.  I had hernias, am bald, and developed Parkinsons at age 59.  We can drive ourselves crazy wondering what exposures might have caused ourselves to get this, but I’m a big believer in the destiny of our genes.

  • Daniel Best

    Member
    September 8, 2020 at 6:38 pm in reply to: Do you have any questions about mannitol?

    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.

  • Daniel Best

    Member
    August 11, 2020 at 2:19 pm in reply to: New documentary about patient’s experience with mannitol

    It’s inexpensive and easy to take dissolved in warm water, so why not.  I signed up on the Israeli organization’s website, according to it I think based mostly on my 165lb weight it recommends 10g/day, which is not very much.

  • Daniel Best

    Member
    July 6, 2020 at 2:11 pm in reply to: No pharmaceutical drugs?

    Hi Amy,  thank you for your post as I think many of us newly diagnosed strive to follow your example.  I’ve added a couple of supplements to my list thanks to your post.  One interesting thing to me is your use of Azilect in the hopes it slows progression.  My neurologist has suggested I start with Azilect and nothing else.  Folks on other forums claimed that taken alone it did nothing for them.  I have 2 questions for you…1)do you think it is actually helping reduce your symptoms?  2)Are you experiencing side effects?  The latter is the main thing holding me back, although the price of the drug does appear to be high.  Thank you!  Dan