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Everything posted by Drummergirl

  1. 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...
  2. Does anyone have akathesia in their off? If so, how do you manage it?
  3. Duopa Pump Users-

    I am scheduled for the Peg-J procedure June 14, with the titration programing starting a few days later, in case of stomach discomfort. Can you share your experiences and which carrier do you use most, what limitations, if any do you have when it comes to hiking, biking and swimming? Feeling overwhelmed after receiving the box of info from Abbvie, Thanks
  4. 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!
  5. 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....
  6. inhaled levadopa

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

    Thank you Peace!
  8. 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.
  9. CBD Oil--Does This Work?

    Where did you order it from Bill BRNC?
  10. 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
  11. Akathesia, is this present in your off?

    Not yet....
  12. 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~
  13. 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/
  14. Water quality

    I also have a Big Berkey filter. It's great!
  15. 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....
  17. 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,
  18. Duopa Pump Users-

    Hi Beau's mom, Thank you for responding. I don't think many forum members are using the pump. Not sure why... I have talked with one current user. She is a frequent traveler, but not active physically. The other person I chose was active, but not available to participate as a mentor for awhile. The Abbvie case manager nurse is very helpful. I had not heard of the two pharmacies either. I ended up with Acreedo, I've had 2 good experiences (communicating )and 1 not so good with them so far. Which pump carrier do you use?
  19. Too much meds

    That is one of the reasons Rytary doesn't work for me. It also can sneak up on me and boom! All of a sudden I'm over medicated. I just feel off when I take it. Must be the fillers in it.
  20. Sinemet making me feel sick?

    Hi MM, sorry you are having this issue. This happens to me as well, not daily. It happens more consistently with the am dose. I do eat something non competitive so my stomachs not empty, but it's not the amount of food like daytime. Try eating a little more just before taking meds. You may need to adjust your food intake or what type of food before meds. The first 7 years on CL I didn't have such issues, but since, my stomach is awful. I personally think and have read that CL can cause stomach issues...one more thing to look forward to..??
  21. For Patriot & Other Lyme'rs

    Thank you
  22. For Patriot & Other Lyme'rs

    What are the skin symptoms with Lyme Disease? Beyond the bullseye?
  23. Generic Azilect

    One thing I learned going thru the Clonazepam 6 month ordeal was/is to keep a journal. I re read your post and a red light went on for me when you said you felt like your legs were going to give out. So I read my journal and I had 21/2 weeks of feeling like crap, the worst symptom that brought me to my Pcp and Neuro was weak legs, especially in my shins., My tremors are in my legs, not my hands or arms, so leg pain weakness was awful. I thought about the generic Azilect not being as effective for tremor, but didn't connect it to the other crappy symptoms. And as I mentioned before the change to generic Azilect, my pharmacy changed from generic TEVA carb/Levo to a less expensive generic C/L, and I had 3 days of constant tremor. Lost 4lbs. I guess it took a bit to get used to them, I wonder just what that means, when your body initially reacts negatively, is that a warning sign???? I hate DRUGS! Thanks for speaking up and listing your symptoms, being specific is so important. We just had 13" of the white stuff.....Ugh...
  24. Generic Azilect

    An interesting article from 2015'- I tend to be very sensitive to the fillers in medications as well. I was feeling a bit off for a few days when I started the Rasagaline. Plus my pharmacy changed generic brands of carb/levo. They had mixed some in with the old, so I didnt notice it, until I was left with just the new. I have adjusted to both. In a recent University of Cincinnati study published in Neurology, subjects with Parkinson’s Disease were given shots of two supposedly similar medications. They were told that the first was more expensive, and the second was similar in effectiveness but, because of differences in manufacturing, was much cheaper. The overall result was that patients’ motor skills after the first shot were improved 28% compared to the second shot. The one fact that the patients weren’t told: Both shots were actually just saline solution. Study authors believe patients got better because they had very high expectations, which translated into health benefits. There has been a lot of debate about the use of generic drugs vs. brand names. Are generics really as effective? It pays to be informed since, according to the FDA, “nearly 8 in 10 prescriptions filled in the United States are for generic drugs. The use of generic drugs is expected to grow over the next few years as a number of popular drugs come off patent through 2015.” What is the difference between generics and brand names? Is there a time when one is preferable over the other? We spoke with C. Michael White, Pharm.D., Professor and Head, Department of Pharmacy Practice, University of Connecticut, to get an explanation: Q: Why are brand names so much more expensive than generics? A: “Unlike the generic manufacturer, the original pharmaceutical company has to pay for more than just the actual production of that medication. The Tufts Center for the Study of Drug Development estimates that the cost to develop and win marketing approval for a new drug is $2.6 billion. It also pays for research and development for medications that failed in trials and can’t be brought to market. According to the IMS Institute for Healthcare Informatics, generics have saved Americans one trillion dollars in health care savings over the past decade—a current rate of more than one billion dollars in savings every other day.” Q: What happens when a brand name goes generic? A: “At the end of an approximately seven-year period of exclusivity, the FDA allows one specific generic to be the first to market. That generic is given a period of time of exclusivity for about six months. At the end of that time period, any manufacturer that can prove that it can achieve the same drug concentrations in the blood that the brand name does can make a generic. Manufacturers of generics aren’t required to do studies in people to prove safety. It is assumed that if they can achieve same blood concentration, they will achieve same results.” Q: Do generics have to have the same recipe, effect, side effects? A: “The generics have to have the number of milligrams of drug that is included on the label in the pills. You can take it to the bank that that does not vary. In addition, the pill needs to get you within 10 percent above or below the blood concentrations achieved with the brand for the FDA to approve the generic, and in reality, they only usually vary by 3-4 percent in one direction or another. So yes, they are very similar in terms of the active ingredient. It is possible that one generic will get you a 3 percent lower concentration than the brand and another can get you a concentration that is 3 percent above the brand and therefore the two generics can be 6% different from each other. Most people will never notice a difference. “According to the FDA, generic drugs do not need to contain the same inactive ingredients as the brand name product. Inactive ingredients are those that have nothing to do with the therapeutic action of the drug; binding materials, dyes, preservatives, and flavoring agents. That’s why sometimes a pill you have been taking will suddenly look different. It usually means a different manufacturer has made that pill than the one you had before. Also, given individual variations, a person can have an allergic reaction to an inactive ingredient in one generic and not another.”
  25. Generic Azilect

    Hmm, that su***, sorry. I hope you feel better soon and figure out that it's not the generic.