Forum Replies Created

  • pglauca

    Member
    June 24, 2021 at 3:22 pm in reply to: Mannitol, a sugar, has given me back my life!

    I was diagnosed more than 8 1/2 years ago. I started using mannitol approximately 10 months ago. I didn’t initially notice any significant changes in the progression of my Parkinson’s symptoms, so I wrote mannitol off as a potential treatment. That being said, I made the decision to continue taking mannitol because it helped me maintain regular BMs. A few months ago, I noticed that many of my Parkinson’s-related communication issues (softer voice, trouble maintaining linear thoughts while deeply engaged in conversations like debates, an ability to address tangential topics and then returning focus appropriately to the central topic) had virtually disappeared. Similarly, my medication seems to produce more reliable results, and I have regained most of my self-confidence. In fact, there are times I feel like I am starting to win.

    In addition to mannitol I also engage in regular intensive physical exercise, and I am learning Mandarin Chinese (and I will do whatever else I think will force my brain to forge new neural pathways). While I can’t say definitively that mannitol is a cause for my improved condition, I can say it doesn’t hurt. I hate Parkinson’s, and I do everything I can to be as impolite a host to this disease as possible. I believe mannitol helps. I will continue to take it.

  • pglauca

    Member
    April 29, 2021 at 3:39 pm in reply to: Do you think there will be a cure for PD in the next 5-10 years?

    I am confident I will outlive Parkinson’s Disease! That being said, seven years doesn’t seem realistic to me. There have been several theoretically valid treatment options tested in clinical trials over the past decade or so, and none have proven viable. While I am optimistic about a few new treatment possibilities on the horizon, even if one (or more) of them proves to slow or stop – or cure! – Parkinson’s, there’s no way it would make it through the approval pipeline in less than 10-yrs.

    Just my opinion. Any thoughts?

  • Didn’t Zhittya Genesis start testing on humans in Mexico more than a year ago? I assume if there was any good news we would have heard about it by now.

  • pglauca

    Member
    April 27, 2023 at 3:35 pm in reply to: DBS surgery forum

    Hi, Linda. If I had it to do over again, I wouldn’t change a thing.

    My tremors were very severe. For the first couple hours of programming the device, my doctor grew a little concerned because my body was resistant to the levels of stimulation. My treatment team eventually consulted with the device’s representative, who double checked the placement of the leads via the company’s “brain lab.” As it turns out, sometimes if the placement site is the GPI, it sometimes takes a little time for the patient to respond. So if this is the case for you, be patient.

    Ultimately, I am experiencing an approximately 80%-90% improvement in my symptoms while off my meds. Because of the very high doses of meds I took, even after roughly halving my med intake, I experience “rebound” symptoms in the mornings (approximately 12hrs since my last dose). My doctor suggested that as the rebound effect diminishes over the next couple of months, in addition to reducing my medication dosage, he may be able to dial back my stimulation levels as well.

  • pglauca

    Member
    April 26, 2023 at 12:14 pm in reply to: DBS surgery forum

    LIFE CHANGING! I got my life back.

  • pglauca

    Member
    April 5, 2023 at 11:04 am in reply to: DBS surgery forum

    I also recently received DBS surgery. My leads were implanted on March 22 and my generator was placed 5 days later on March 27. My surgery was done using an MRI guided ClearPoint system that allowed for the entire procedure to be completed while I was under anesthetic (9 hours …rough).

    I am 54 years old and was diagnosed with PD approximately 10 years ago.

    The surgeon said it was a textbook case and that placement of the leads was “perfect” (GPI placement).

    I experienced a brief (approximately 1-week) and mild honeymoon period during which I found it easier to control my tremors through biofeedback than normal. This allowed me my first good nights sleep in YEARS. Because I was a bit concerned about the mildness of the honeymoon period, I asked my surgeon if the degree to which I experienced a honeymoon was any indication of the degree of the overall effectiveness of the DBS. He said the honeymoon period (if the patient even has one) means nothing significant – it’s just a bonus to those who experience it.

    I will have my device activated on April 24 & 25. My fingers are crossed.

  • pglauca

    Member
    June 29, 2021 at 3:31 pm in reply to: Mannitol, a sugar, has given me back my life!

    Hi, Beth.

    Here’s a link to the stuff I buy https://www.amazon.com/gp/product/B01KAM9FOO/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1

    I take approximately 1-tbsp per day. The change was very subtle. In fact, I’m not %100 sure my improvements can be attributed in a significant way entirely to mannitol. I also try what I can to remain “outside my comfort zone” in support of my own research related to the stimulation of healing processes in the brain. At this point, though, I do feel that mannitol DOES have a net positive effect.

  • pglauca

    Member
    April 29, 2021 at 4:23 pm in reply to: Do you think there will be a cure for PD in the next 5-10 years?

    Thanks for the response, Russell.

    We’ve seen a lot of technological advances in the last 40-years (give or take): we’ve mapped the human gene code; we’ve made significant advances in ethical stem cell production; we’ve developed *retro-virus* technology to make it a realistic, cost-efficient delivery technology… So, why is the gold standard of PD treatment over 50-years old?

    Although I am convinced I will outlive PD, I am losing confidence that an effective treatment (or cure) will be developed and approved before it does much more significant damage. So far, although my neurologist says I’m “killing it!’, fighting PD for roughly ten years is tiring. Simply said, PD is RELENTLESS (as I’m sure you know). Some relief in the next ten years would be *great*, but I don’t see it happening in that time frame.