Jump to content


  • Content count

  • Joined

  • Last visited

Community Reputation

6 Neutral

About Ospy

  • Rank
  • Birthday 04/17/1962

Profile Information

  • Gender
  • Location
  1. Thank you all for your input. There have been a number of good ideas presented
  2. Huh. I'm usually taking with a tiny splash of water. Perhaps I should try more water. I have noticed if I get up and walk around (which I'd rather not do) I have better success with this medication taking. Thank you for the tips. Very helpful.
  3. I am 55 years old. I was diagnosed with PD nearly 25 years ago. It wasn't until the last 2 years that I began experiencing freezes and very uncomfortable off-times. It was also during this recent period I began waking in the middle of the night totally off my meds, maybe even frozen. This is isanely uncomfortable. In an effort to reduce the likelihood of this I began taking extended release Sinemet before bed. But sadly this tends to get me too about 3:30 or 4:00 am. Sometimes I'm waking very uncomfortable. I began keeping my regular Sinemet 25/100 by my bed. heres the problem. Often I will sit up at 4:00 and take a Sinemet and lay back in bed and struggle back to sleep. Somehow though, it often will not work at all when taken in the middle of the night. I'll often eventually realize it's after 5:00 AM and I'm still frozen. Has anyone else experienced this? Is there a reason why this happens? Is there a solution? Thanks
  4. Heard about this new drug Opicapone for use with sinemet for reducing "Off time". Wondering if any of you have tried it. How does it work? How much does it cos? Any side effects? Thnx
  5. Hi guys. Reminder: I'm 54 - was diagnosed PD in my early 30's - I have had amantadine prescribed to me on a few occasions over the last 20 plus years. I never stayed on it long because I couldn't see any value in it. It never seemed to do anything. Hell! I wasn't really sure what it was supposed to do! Recently had a Dr appointment. Was telling him about my struggles with freezing. This is a symptom I've only started getting over the last couple years. And it's getting worse. My Dr said Amantadine helps this. So I decided I again would try it. At least this time I have a way to measure whether it's doing what it's intended. Oh my god! I am so impressed! I haven't had a freeze in 3 weeks. Blows my mind. However, since starting on Amantadine, I have had real trouble sleeping. It is a huge problem. Go to sleep at 10:00. Sleep hard. By 1:00 AM I'm wide awake. Ugh. Does anyone else here have this problem? More importantly, have you any solution or suggestions? Thanks.
  6. Ospy

    What they may never tell you

  7. My doctor didn't seem all that excited about me trying Rytary as he handed me coupons for several weeks free trial of the medication. After several weeks on Rytary I was convinced I was feeling much much better. After I exhausted the free trials I was convinced I was going to (at least for now) begin buying it. It's extremely expensive costing me $330 a month I decided to send my doctor an email explaining how much better I'd been feeling since starting Rytary. I thought his reply was interesting: "You can use a combination of immediate-Release CL and old school timed-release CL to make a sort of cheap Rytary. Start with one CL 25/100 IR then one CL 50/200 ER every 4 - 5 hours....lots cheaper than $330 a month" I think my doctor really has a problem with the price of Rytary (as do I) and feels the same thing can be accomplished with a combination like this. Does anyone here use this combination? Does it produce results similar to Rytary? Finally, I remember from 20 years ago a Sinemet CR. Is what he is now calling ER the same thing as what I'm remembering as CR
  8. Ospy

    Possible Young Onset PD?

    ☝ Good answer!
  9. Ospy

    What they may never tell you

    Hi Fight! As you read, it was never the Isa that was causing the off periods but rather the lack of nicotine. Through years off anti- smoking awareness campaigns we are conditioned to be spooked by nicotine. And rightly so! Because tobacco products are very unhealthy! However this has given nicotine a bad rap and there are many safe and effective ways to get nicotine. I still Vape nicotine now. It is not addictive like nicotine in tobacco products. You can also try patches. I still do not have off times nearly as severe or often since bringing back nicotine. As for isagenix, I still use it often. Always feel better after drinking it. But I always associated that to help with problems from my spinal injury. I recommend googling 'Parkinson's nicotine' and reading all the studies. I think you'll be amazed.
  10. Ospy

    Levadopa dosing schedule

    Hi. My name is Brian. I'm 54. I was diagnosed when I was about 31ish. So I've been doing this dance a long time lol. My answer is no. In fact I've never had a rigid schedule. I take sinemet 25/100 when I waken (whether it be 4:30 am or 7:30 am) and I proceed through the day taking one approx every 3 - 3 1/2 hours (your time frame may be different). And I never record when I take it. Probably because I started so young and was determined NOT to let this thing control my life. Anyway, hope that helps.
  11. Ospy

    the pd you don't see

    Was really interested in listening to Linda. Got about 10 minutes in and had to shut it off. She wants to talk about politics. I dont think it belonged there.
  12. Ospy

    the pd you don't see

    Lol yeah, twenty-some years ago my first neurologist was just like that gal said, "here's some drugs. See you in six months. Keep your chin up"
  13. Ospy

    Trying Rytary for the first time

    I started Rytary a couple weeks ago. Had very low expectations with a sprinkling of hope. I must say, like Dave said, there is no perfect solution. Being C/L anyway, how much different could it be? However I feel a lot better on Rytary than I've felt in a long time. The peaks and valleys of dyskinesia and 'off' periods is much less dramatic. All in all, im very impressed. When I first started Dave had mentioned using the sinemet if needed on those occassions when I was freezing up. That was very helpful advise. I have been averaging about adding a half sinemet tab 25/100 every 2 days. Works real well. (54 yo male. Diagnosed at 31 yo)
  14. Hi pink daisy. My name is Brian. Im 54. I was diagnosed at 31. They told me I could work maybe 5 more years when I was diagnosed. I worked full time and some over time for 18 years. One things certain. Parkinsons affects everyone differently. You're doing the right stuff. Hang in there. Take this strange adventure one day at a time.