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Drummergirl

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Drummergirl last won the day on September 21 2017

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About Drummergirl

  • Rank
    Advanced Member
  • Birthday 09/06/1960

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  • Gender
    Female
  • Location
    White River Jct. Vermont
  • Interests
    Spending time outdoors, hiking, snowshoeing. My dogs, my FAMILY, working out, drumming.

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  1. Drummergirl

    Cogentin for tremors

    Years ago I was rx'd Cogentin by the second Nuero. I was already taking a low dose of Carbo/Levo when he started me on Cogentin. We couldn't determine its effectiveness due to the other meds, so I discontinued taking a med w//o a known benefit. The second Neuro said if I had seen him first he would have started with Cogentin. His past patients had success using it early on.
  2. Drummergirl

    Akathesia, is this present in your off?

    I don't "sway" or rock when seated, there is still a movement tho, it goes to my feet and doesn't include my upper body. This may be a me thing because my tremors are in the legs, not arms. Thanks Sherrie for the info.
  3. Drummergirl

    CBD Oil

    I use CBD oil for sleep. I have had more success with it, then not. I can't say it works consistently. Like tonight, but worth trying. As far as tremor reduction; yes, if tremor is bought on due to stress, anxiousness rather then just "off time". But not so, if used in place of C/L.
  4. Drummergirl

    Where to get the best quality of Mucuna puriens?

    Marle222, Are you or had you been seen and treated by a Lyme's specialist before PD diagnosis?
  5. Drummergirl

    Akathesia, is this present in your off?

    I agree, I think the swaying is "mandatory". When I focus and think about every movement before I move, I can stop it, but it is so overwhelmingly just there, I can't sustain the non sway focus for too long. DG
  6. Drummergirl

    Akathesia, is this present in your off?

    The swaying I experience can occur when I'm washing dishes, standing in line at the store. I do believe this is a direct result of long time use of C/L. I would say dyskinesia. Akathisia for me is having to walk non-stop, & leg stretching, during my off time to relieve the pain in my shins. My tremors are lower legs. This also includes, rapid pulse, elevated BP, which is normally low and sweating. Many times I can hardly take a deep breath. I resemble someone experiencing the DT's... Gotta luv these drugs...
  7. Drummergirl

    Duopa Pump Users-

    Hi Mihai, No, Insurance and big Pharma couldn't come to an agreement/contract for the med gel.. I tried the shot, Apokyn, to use as a rescue, but, I had an allergic reaction to it. I'm looking forward to the inhaler...can't get here soon enough.. Thanks for checking. Are you still pleased with it? will you go to the smaller, under the skin pump once it's available? Enjoy!
  8. Drummergirl

    inhaled levadopa

    I hear yah MM....I have to eat constantly just to maintain, let alone gain weight. Ive been trying to gain for 2 1/2 years, but mo can do....
  9. Drummergirl

    inhaled levadopa

    YAHOO!!! Finally.....
  10. Drummergirl

    CBD Oil--Does This Work?

    Thank you Peace!
  11. Drummergirl

    Music and Parkinson's Disease

    Drummer here....that's how I noticed my first symptoms. My right foot, using the bass drum pedal wanted to double or triple beats... I feel better mentally and physically when I listen and play.
  12. Drummergirl

    CBD Oil--Does This Work?

    Where did you order it from Bill BRNC?
  13. Drummergirl

    CBD Oil--Does This Work?

    Murray, Where did you purchase the CBD oil from? I just tried some today that is 0%THC. It is oderless and tasteless (like me). I feel great already at only a half drop. I reduced my C/L by 1/3 just because I feared taking too much in combination. I think I am going to like this
  14. Drummergirl

    Akathesia, is this present in your off?

    Not yet....
  15. Drummergirl

    Akathesia, is this present in your off?

    Thank you all for your replies. Even after 22 years, I still find it interesting how different we all can be and to what degree. I’M DISMAYED THAT DOC’S RARLEY DISCUSS THIS SYMPTOM WITH THEIR PATIENTS, ESPECIALLY THOSE OF US experiencing these disabling sx. It’s an area they do not fully understand or do not want to. Here is how I found out I have SEVERE AKATHISIA. A couple of weeks ago I went to my Neuro appt. in my off state. This was the first time he had seen me in my off. During my prior visits, my leg tremors were not present, or barely, had some dyskinesia. My walk has always been a quick pace. His comments have been: "you respond incredibly well to Levodopa! in small dosages" but frequent, as I can become over med easy. My complaint has been, "how do I go from almost no sx, to such severe leg to full body tremors, nothing in between.. or (quaking) that consumes my entire body. So bad that I cannot sit, lie or even stand still. During this 3 ½ hr off time appt. several attemps were made to take my BP, but I couldn’t stand still long enough. As I started to return to on state; they were able to get a very high BP and high pulse. Sweat drips from my face, I can hardly catch my breath. I have no choice but to walk/pace, this is the only way I can tolerate it or get some relief. I lost 2 lbs. in the 3 ½ hours I was there. This has been my off for the last for 2 + years. Needless to say, I hate OFF time!! Neuro's summary following my visit; SEVERE Akathesia...He is the first doc, out of 5, (4 at one time to determine what I was experiencing, and none reported this) that put a name to my debilitating sx. I must say, I was alarmed by this, but yet releived that finally I knew what I am experiencing. I still have many questions for him; will it always be my off, does akathesia differ in pwp than those w/o PD and many more….. My research on Akathisia is; it may or may not be a component of PD, whether or not that component is from PD meds remains uncertain. It can also be from other medications, the “older anti-psychotic drugs and others. I have never been on those. However, I was on Clonazepam .5mg for 9 years. Tapered off 21/2 yrs. ago. With months of withdrawal..however, it can be used to help akathesia, but not long term as it has it’s own dependency issues. So more questions for him on that as well. PD...always a challenge~
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