Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


MShep last won the day on April 26 2014

MShep had the most liked content!

Community Reputation

11 Good

About MShep

  • Rank
    Advanced Member
  • Birthday 10/26/1948

Profile Information

  • Gender
  • Location
    Las Vegas, Nevada
  • Interests
    Rodeo, model trains, poker

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. MShep

    Looking for experience with new med

    Hello Optomist, I was originally diagnosed 14 yrs ago and have been diagnosed twice more on my request. I was one of those non believers. Wrong on my part. My meds have increased many many times over the last 14 years and my neurologist recommended Apokyn to me about a year ago. Again I was hesitant but over the last year, my meds have been wearing off sooner more often than they did in the past. My Parkinson's meds are 6ea. 25/100 carb/levo per day, 3ea 2mg ropinirole per day, 1ea 50-200mg carb/levo ER at night, 3ea. 200mg entacapone per day, 3ea 300mg gabapentin per day. My meds have done wonders for me all the way thru this long journey. Now after about a month using the Apokyn when needed, I can report it does wonders. I inject the 0.2 dosage (10 clicks) now and I may go up to the .03. I have had fantastic results with it. I don't use it very often, only when I feel I'm having a dose failure or if I have missed my med's for some reason. I want to keep the usage to an absolute minimum for myself. From the first injection when I was totally off my meds, the results were unbelievable. I could hardly move or talk and within 7-8 minutes, I was able to walk and speak again. My tremors which were pretty bad in the off condition calmed down and my leg tremor went away completely. I am very impressed with this med. I hope you have equally good results. Thanks for asking, and feel free to ask any questions you have, we are all in this fight together. MShep
  2. Hello all, It has been awhile since I have been on the forum. I have been very busy trying to keep up with the symptoms. Meds are beginning to wear off quicker than they have over the past 14 years. I am getting ready to start a new med called Apokyn. It is injectable and is used as a "first aid kit" for PPD's because of its quick action when the normal meds have not kicked in or missed a dose, almost never, etc. Has anyone used it before and what was your experiences with it. Thanks, Shep
  3. MShep

    Excessive sweating

    As always, Dr. Okun, I thank you for your reply and information. Shep
  4. MShep

    Excessive sweating

    Hello Dr. Okun, I have for most of my life before PD been a person who could sweat easily when performing physical work or in the heat of the day. I have noticed over the past couple of years that my sweating has become a bit of a problem as it is very heavy now. Do PD drugs such as Sinemet and Requip as examples cause sweating to increase or is it the PD itself? I won't bother you with my med list but the previous drugs along with entacapone and Sinemet ER are my PD drugs. They work extremely well for me but I don't want to be in a wet T-shirt contest. Thanks in advance, Shep
  5. MShep

    Medication changes with new neurologist

    Thank you very much Dr. Okun. I have started taking the ropinerole again but slowly working up to my original dosage over a week. Shep
  6. MShep

    Medication changes with new neurologist

    Dr. Okun, Thank you for your information. I have noticed, as well as my wife has noticed, I have more trouble with my speech than before I stopped the Requip and my balance seems to be not as good. Could those be effected by stopping the Requip? My Dr. says it is a very low dose. My old Dr. wanted me to slowly increase the amount of Requip. To start, I was taking 4ea .25mg tabs 3 times a day and we increased it to 6ea .25mg 3 times a day. It made me very sleepy so we reduced it to 5ea .25mg 3 times a day. That I have been taking for about 6 months now. I stopped all together 1-1/2 weeks ago. I believe I am going to start again. Is the dosage I was taking very low 5ea 3 times a day? I hate to be a pest but I do like the new Dr and he seems very up on PD whcih is his specialty but I guess leaving someone I trusted for so long may have an effect also. Just want to make the correct decision. Thanks in advance for your help as always. Shep
  7. Hello Drummergirl, I have been taking carb/levo (sinemet generic) since 2003. My Dr. has taken me up to my present dosage in combination with other med's very gradually. Sometimes over the last 14 years, 1/2 pill at a time. It all had to do with my symptoms and the excellent patient Dr. relationship we built over time. I now take 6ea. 25/100 carb/levo, 3ea. 200mg entacapone, 1ea. 50/200 carb/levo ER at bedtime. I also was taking 15ea. .25mg ropinerole. These all were spaced out during the day. Sometimes at night, I take another 25/100 if I feel I am wearing off. I now have a new Dr. and he has taken me off of the ropinerole. The jury is still out on that move. I am having some minor symptoms returning. I'll go back on them if it does not change. Hope this helps you. The only advice I would have is to make sure you have a good relationship and honest relationship with your Dr. They can be your best friend or your worst enemy depending on their listening skills. They need to hear you and your concerns. Best of luck, Shep
  8. Hello, I know you all are busy and I understand that. I have asked to find out why my 2 previous post have either not been answered or if they just are not posting. I asked Dr. Okun two questions on two different posts. They were basically the same question but when the first did not post, I asked again on the second. I have also asked why things do not post on an existing post in this forum. Perhaps if I am not going to get an answer (which would be a first) please let me know so I won't keep pestering you. Thanks in advance, Shep
  9. MShep

    New Neurologist/med changes

    Thank you all for your input. I suppose I am just a little gun shy since it really was not my choice to change Doctors but rather the choice of my insurance. Again thanks and good thoughts for you all. Shep
  10. Hello, yes I have had a "near total wearoff" and it is not something I want again. It scared the crud out of me. I went in for a colonoscopy and endoscopy on the same day at the same time. Night before, usual routine for the colon cleansing, and nothing in the a.m. of the procedure except my meds. Those were taken at 5am. My procedure was at 9am which meant I was going to be late on my med's but I felt like it should not be that long and I should be ok. WRONG!! It was late getting in and took much longer than expected for the two procedures. When the nurse awoke me and said it's time to get dressed, I was stiff as a board. I could hardly move, I could not speak, move my arms or legs, could hardly blink, I felt paralized. That scared me. It took about 20 min before I could even get my sweat pants on. The nurse came to check and saw I was having problems. It was almost 1pm in the afternoon. As soon as my wife saw me, she knew immediately what was wrong and gave me a dose of my carb/levo and ropinerole. After about 20 min, I was doing a little better. Make sure if you are going to have anything done like this or anything similar, tell your Dr. That was my mistake and it will not happen again. All the luck for you. Mike
  11. MShep

    New Neurologist/med changes

    Hello all, I have had Parkinson's for about 12 yrs. now. During that time as we all have, many changes have been made to my med's always in the add column. The neurologist I have had for the last 8 years was great. He really stayed on top of my case and the many changes that have taken place with changes in my med's to help with the symptoms. We moved to an area where my insurance no longer would cover that Dr. I found another Neurologist which is covered by my insurance but I have been reluctant to go to him for fear of changes in my med's that most want to make. My med's have kept me going just fine for about 6 years and I feel like the changes my old Dr. has made in them were correct. My med's are scheduled thru out the day on avg. about every 2-1/2 hrs apart and they were split up as everyone does. My med's are 6-25/100 carb/levo, 3-200 entacapone, 15- .25 ropinerole, 1-50/200 carb/levo er at night, and 6-100 gabapentin. On my first visit to my new Dr. the first thing he did was stop my ropinerole immediately. He said the dose was too small and it was doing nothing for me. I have been taking ropinerole for about 6-7 yrs. at various changes, a little at a time. My old Dr. wanted me to increase the dosage to 18ea. .25 a day but I felt like it made me tired so he reduced it to 15 with thoughts of increasing it a little more bit by bit. My new Dr. said I should have no side effects from stopping with out a weaning off period. I and my wife have noticed that my balance is not as good and my speech has gotten a little worse. I feel like my wearing off is a little more often. Enough of my rambling. Has anyone else just stopped requip and have you had any changes after stopping. HELP Mike S.
  12. MShep

    Forum question not posting

    Hello, My name is Mike and I have posted a question for Dr. Okun two days in a row, same question, maybe worded a little differently. I don't remember ever waiting a couple of days to get a reply from Dr. Okun. Are my questions posting? I can't seem to find them to check. Thanks in advance for your help. Mike S.
  13. Hello Dr. Okun, I have asked questions of you over many years now and always find you input a real plus for me. I recently had to obtain another neurologist as the Dr. who followed me for almost 10 years was not covered any longer by my insurance as he was located at the other end of my state. The new Dr. made a couple of changes in my med's which is a fear I had with changing Doctors. I was doing extremely well with my med's. My med's were as follows. 6ea pd 25/100 carba/dopa, 15ea pd .25 ropinerole, 3ea pd 200 entacapone, 1ea nite 200 carba/dopa er. These med's of course are spaced out during the day. Per the new Doctor, he did my initial exam as it was my first visit and he was in agreement with my diagnosis as Parkinson's. I also gave him all of my previous Dr records. I have been doing fine with my regiment with many changes along the way with dosages. The new Dr. has taken me off of the ropinerole completely because he says the dosage is very low. I told him that I originally was to take 18ea pd @ .25mg ea. but it made me very tired. It was reduced to the 15ea. pd. Is this dosage really that low? I have stopped taking it completely. I asked about any weaning off and was told should not be a problem. Should I expect any side effects? He also mentioned possible use of Apokyn, the injection for wearing off problems that I seem to be experiencing. I have not heard that much about this medication but I do know it is out of my cost range even though it sounds like a great drug. Please give me your thoughts and as always, I know ea. of us is different and I am not looking for additional diagnosis, just your opinions about if I am heading it a good direction or should I be careful about these decisions. Thanks, Shep
  14. MShep

    Taking more levodopa/carb.

    Dear Dr. Okun, That is the best answer I have ever had about Sinemet. Thank you again for your great work. Shep
  15. MShep

    Taking more levodopa/carb.

    Hello Dr. Okun, You say "it" is not likely in your response to Drummergirl. What do you mean by "it"? I was dx in 2003 and have increased gradually over the past 12 years to 6-25/100 pd, 1-50/200 night, 3-200 entacapone pd. Do you mean that being on Sinemet for 20 years is not a likely occurrence? Are there standards for the max amt of Sinemet or Carb-Levo that should be taken? How long is too long? I have wondered myself about how long I will be able to keep using my med's as they do such a great job for me. Thanks in advance, Shep