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Drummergirl last won the day on September 21 2017

Drummergirl had the most liked content!

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100 Excellent

About Drummergirl

  • Rank
    Advanced Member
  • Birthday 09/06/1960

Profile Information

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

Recent Profile Visitors

698 profile views
  1. 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!
  2. 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....
  3. inhaled levadopa

    YAHOO!!! Finally.....
  4. CBD Oil--Does This Work?

    Thank you Peace!
  5. 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.
  6. CBD Oil--Does This Work?

    Where did you order it from Bill BRNC?
  7. 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
  8. Akathesia, is this present in your off?

    Not yet....
  9. 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~
  10. Does anyone have akathesia in their off? If so, how do you manage it?
  11. A great site for PD information...

    This is a great PD site! Dr Laurie Mischley's video on nutrition is awesome! Her health care practice is the model of how health care should be.... https://scienceofparkinsons.com/2017/09/18/food/
  12. Water quality

    I also have a Big Berkey filter. It's great!
  13. The Importance of Copper in Neurological Function

    Concentrace trace mineral drops contain 72 trace minerals that include copper. They are used by most natural path MD's. https://traceminerals.com/concentrace-trace-mineral-drops/

    Hi Italy, I have been researching stem cell for PD for a while now. There are reputable physicians/clinics, not all are frauds. Here is one my PT met during a seminar she attended and I spoke with them. http://qigenix.com/ There also is a website that list stem cell clinics/physicians, as well as a blog. www.ipscell.com. I think the main reason stem cell hasn't been discussed or supported is, the cost, and the long term results of treatment haven't been yet been available. Seems like the majority of people have good results for several months, but info isn't there beyond this. Also, depending on the stem cell process, which there are many, it may take up to several treatments for results. At 10K plus, the average person can't afford the treatment. If it was 80% + guaranteed to work , it would be worth it to me! They will get there in time....
  15. Duopa Pump Users-

    Hi Mihai, Accredo and my insurance company do not have a contract in place, the pump was approved, but not the medication. Doesnt make sense, and it's been a roller coaster trying to get all the players to agree. Disappointing...so at this point it's on hold. Im glad it's going well for you now. Why was the tube kinking at night? Your sleeping position? Thank you,