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    • #16320
      Jean Mellano
      Participant

      There are several medications prescribed for PD, different dosages and there may be optimal times to take with food.  It seems as though I have been working on this for 2 years and I am still trying to find the right combination.  Have you found what works for you and how long did it take you?

    • #16551
      Dan
      Participant

      Still searching. From 2009 until ~ 2016 it was at least ok to tolerable. Then things started going south. Tried many forms / combos of Ld/Cd…. + agonists, extenders, supplements, folklore concoctions, buzzard butts n snake lips, things in dropper applicators and so forth. Now on capsules that cost as much as government hammer-heads or diamond plated faucet washers. Still tweaking and seeking.

    • #16557
      Jean Mellano
      Participant

      wow, almost 10 years… and i thought i held a record at 4 years.  it has become a full time job. next on my list is medical marijuana and thiamine.  i love your sense of humor Dan.  … tweaking and seeking, i may use that in a future article

    • #16598
      Jo S.
      Participant

      Thank you for the laugh, Dan! 😀

      I’m still “tweaking and seeking” a bit too, but I thoroughly dislike taking pharmaceuticals, so I’m not eager to “shop around” and try anything new or add anything more to my current regimen (which took about nine months to sort out). I’m currently testing out new medical cannabis products to help get me from pill to pill without additional pharmaceuticals.

    • #16600
      Jean Mellano
      Participant

      sounds like a good plan Jo

    • #16601
      Jo S.
      Participant

      Thanks, Jean!

    • #16609
      Dan
      Participant

      Tried some of the cannabis in left handed chocolate… made my wrist watch stop, with no or little results toward the PD.  Did several CBD oils, worked twice, then, not unlike our weather, became unresponsive and unpredictable, then zip – no result. Today was terrible. Just barely able to move. 10th capsule 48.75ld/195cd time release. Over 13 1/2 hours. Time release. Must be in nanometers per fortnight squared.

       

    • #16610
      Dan
      Participant

      maybe kinder-garden paper paste…..

    • #16613
      Jean Mellano
      Participant

      dan you are too funny… What is left handed chocolate?  as a chocaholic, you have peaked my interest 🙂

    • #16614
      Jo S.
      Participant

      LOL! ‘Nother chocoholic here (and left-handed to boot)! Dan, your comment about “left-handed chocolate” piqued my interest too!

    • #16615
      Dan
      Participant

      “Left-handed chocolate” goes back to an old term for marijuana, “left-handed tobacco” or “ left-handed cigarettes”. The reference suggests things ‘left-handed’ are not a norm, but an exception. I’m right-handed, but most of my children and many grand children are left-handed. To them, I am out of the norm. In any event, THC as a component has not been helpful to my version of PD. Except to say, at the time, I did not care one way or the other for a brief period. Was thinking about starting a new thread, ‘Did I tell you what happened the  other day?’ or ‘ ‘places PD has taken me that I didn’t want to be’….

    • #16623
      Jean Mellano
      Participant

      dan, i grew up in NY and smoked my fair share of marijuana in high school in the 1970s (and yes, I inhaled LOL), I dont remember that terms, maybe i smoked too much pot

    • #16627
      Dan
      Participant

      I never tried the stuff until much later – early 30s. Decided it was not for me. Made my watch stop resulting in 1 hour soliloquies lasting  a few seconds.

    • #16628
      Dan
      Participant

      Mary Beth,

      I have tried about 5 different CBD oils. From 150 mg to 1000… what ever that means. only found 1 that worked within minutes. relieved a bad foot cramping condition. Very painful when they occur, which is all too frequently. But the effect only happened twice, never repeated.

      Several problems are at hand. (my take).

      1. Everybody makes or sells CBD oil. Cannabinoids w/o THC are all the rage.

      2. This is problematic – in that little oversight or regulation is available to keep the sellers honest. Which of these are pure, which are dangerous or contain contaminants? How do we find out?

      3. Then the sheer number is unmanageable with out a very time-consuming expensive endeavor.

      cbd oil, aka “snake oil” ( in some preparations) is definitely an uncertain substance in many cases, and potentially mixtures of lamp oil, mineral oils, ect ad infinitum. I occasionally search for reputable dealers that honestly display ingredients. I am saving this chase for a point where I have the energy and wherewithal to pursue options. In the meantime I welcome suggestions for any confirmable brands and preparations    that have worked.

      All the best,

      Dan

       

       

    • #16638
      Jean Mellano
      Participant

      dan LOL,, i agree with the 2 problems you mentioned to Mary Beth  and when Target starts selling CBD , we are all in trouble..

    • #17603
      Jennifer Blackstone
      Participant

      My meds need to change to keep up with progression, as we all do.  Sometimes I go a year or more without an increase.  Now I am in a time where meds aren’t working as well and seem to leave me with breakthrough symptoms during the day. . . but not every day!  It is so tough to predict.

      There was a gentleman who wrote on this site in Oct, I think, of a very fast rise in the amount of Sinamet he was taking.  I wondered why the other classes of PD meds were not in his regimen.  I think the different types of meds can complement each other (??)  I started 8 years ago with Azilect 1.0 and Mirapex ER at a really low dose — 0.75 mg and now up to 3.0 mg (4.5 mg is the highest).  I did not start any Sinamet for the first 5 years.  Then added 1/2 tablet 3x per day.  I’m now on 1 tablet of 25/100, 4x per day.  Sometimes I have to take a fifth at bedtime.

      So, My doctor felt it was good that I have an amount of three different typ

      es of meds that act differently and each contribute.

       

       

    • #17615
      Mary Beth Skylis
      Moderator

      Dan,

      I recently got a bottle of CBD oil from Taspen’s Organic Healing Products, near my home. They’re a Colorado-based company that lives and breathes CBD. After telling them that I suffer from tendinitis (as a rock climber) they had many helpful suggestions. And they helped me understand that some products contain higher CBD levels, which can impact how quickly you experience the change. It’s very pricey, but I’ve had really good luck handling tendinitis with one of their tinctures. But I think your concerns are incredibly valid. How do we know what kind of ingredients can be found in your oil?

      I know this topic can be controversial, since CBD isn’t legal in every state. But I find the idea of managing pain and muscle issues with plant-based products really appealing — instead of pumping tons of money into pharmaceuticals, which often bring unwanted side-effects.

      My Dad (diagnosed in 2013), has dabbled with CBD to no avail. But I think consistency is really important. Taking a multi-vitamin once a month will benefit your body. But you probably won’t see noticeable results unless you’re consistent. That’s my theory anyways.

      I spent a few hours with a Colorado doctor, once. And he echoed some of your ideas regarding marijuana. Since it’s not federally legal, there isn’t very much research that’s being conducted to determine how marijuana use can impact other medications. And that’s his greatest concern. Sometimes marijuana can change the level of other medications you need. But it’s clear that many people find relief while ingesting THC.

      All very interesting. I’m following this forum closely.

    • #17616
      Mary Beth Skylis
      Moderator

      Jennifer-

      I recently had the chance to go to one of my Dad’s neurology appointments. He expressed concern at the idea of continuously increasing his dosages. He is in it for the long run, and doesn’t love the idea of taking tons of pills as he gets older. I asked his doctor if your body becomes resistant to sinemet. And she explained that, no, you don’t build a tolerance. But PD progresses, requiring higher doses. Then she assured us that taking more will help my Dad to balance his quality of life, now. And he shouldn’t see negative side-effects.

      It seems like the increase in meds that he has seen has been very minor. He used to take half a pill. Now he takes a full pill, and he takes them more frequently. But it seems to be different for everyone.

    • #17621
      Robert
      Participant

      Hi Jennifer

      I am that October gentlemen.

      I basically have been told I have slow and stiff Parkinsonism (Likely Idiopathic Parkinson’s Disease.  A little hedge there in a definitive diagnosis that is slowly evaporating with the passage of time).  I really never had a tremor.  First symptoms were my body seemingly forgetting how to walk without having to think about every single step.  I was diagnosed with Parkinsonism in May 2018 and told that no meds were necessary then and come back in a year or so.  In August 2018, at second opinion, I was told Parkinsonism (possible MSA!) H&Y State 3, and start on one of those other meds.  In October 2018, at third opinion, diagnosed with Akinetic Rigid Parkinsonism, H&Y Stage 2 1/2,  and started on the Sineme(carbidopa/levodopa).  I am now a patient of the third opinion doctor’s group.

      My doctors believe that Parkinson’s disease is a dopamine deficiency disease and replacing the dopamine in your brain with carbidopa/levodopa is the best treatment for it.  They told me there are other pills that are used to help with the carbidopa/levodopa pills to be more effective and there are other pills that help the body to use the dopamine that it still has, but if your body can stand it and it does not cause more problems, then carbidopa/levodopa has been shown over 50 years to be the most effective treatment for PD.  I have noted in other places in the forum about my journey to arrive at my current regime.  I started Sinemet November 2018 on a relative low dose.  I am now taking 2 25/100 carbidopa/levodopa pills 5 or 6 times a day and 4 50/200 carpidopa/levodopa controlled release pills on top of the regular pills too at strategic times , to be sure I achieve total 24 hours a day coverage.  I also have low blood pressure issues, so I take a midodrine for that.  I also found that have had severe bladder issues caused by the Parkinson’s.  I now “take” self-catheterization  for that!  The final pills I have added to the mix are two Cymbalta pills a day to help with keeping “sharp”, as I still work 10 hours days running business dealing with financial stuff.  All of that being said, I now feel I am finally properly medicated.   It took 7 visits with my Movement Disorders Neurologist over the past year to adjust the meds up and down and such to get to this state.  I had a scary month last summer when the pills seemed to quit working.   We tripled the dose the next visit which showed I just needed more of the magic pills.

      In summary.  My doctor’s plan seems to be this —  Flood the guy with Sinemet (carbidopa/levodopa) until it works.  Figure out what the other symptoms are that need to be treated.  Treat the other symptoms.  And just get on with it.

      Of course, I am waiting to see how long this works.  But I actually feel pretty good at this point.  Finally.

      Required disclaimer.  Every PD journey is specific to that person and follows a path unique to that person.

      I believe this forum serves us all well when we are able to see what the different PD journeys are.  To that end I am happy to share what I think makes sense to share with others.

      Best of luck to you on your journey.

      Robert C

    • #17625
      Toni Shapiro
      Participant

      Hi, I just had an increase in my meds 2 days ago.  I started out with 1/2 Apo- Levocarb 100/25, 3 times a day, increased to 1 tab 3 times a day after 1 week then 1.5, 3 times a day after another week.  This was going to be my dosage and was working well for about 4 months.  I couldn’t believe how it helped with pain.  I went from hurting everyday to almost nothing and my tremors were better.  I didn’t expect that so it was wonderful. 4 months in I was increased to 2, 100/25, 3 times day.  After 3 months I noticed that in the morning I was incredibly shaky and off balance and would have to wait until 8:30 am to take my first Levocarb dose.  I also could not sleep past 5 am the latest.  My nuro prescribed 2, 100/25 Apo-Levocarb CR, (time released) at bedtime along with my 6 regular pills throughout the day.  Although it’s only been 2 days I have been able to sleep past 5 am and I wake up feeling energized without the awful shaking and balance issues. I don’t like medication and the idea of taking 8 pills a day just for my PD, not including anxiety medication, upsets me, however it works so I am very grateful.

       

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