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Found 5 results

  1. Trying Sinemet

    I'm now over 4 years since diagnosis. Exercise has been my primary medication for these past 4 years. About a year ago, my tremors were significant enough that people frequently asked what was wrong with me. The tremors made me look weak (sick), which is simply not acceptable to me. I began taking medical marijuana about a year ago and was very satisfied with the result. Not only did it improve the tremor, but it also virtually eliminated my frequent urination/urgency issue; lessened my fatigue; improved my sleep, and much more. All this improvement without side effects. Unfortunately, as time went on, I discovered several problems with using medical marijuana as the primary PD drug. None of these problems were related to medical issues, but rather legal and other practical issues. I discussed this in a recent post. Therefore, at my last MDS appointment, I discussed these issues with my MDS. He recommended trying Rimantadine. It had plenty of side effects but no effect on my tremor. He suggested trying Sinemet, which I am now doing. I'm taking one 25/100 tablet 3 times a day. One at 6:30 am. One at 11am. One at 4 pm. I was hesitant to carry medical marijuana in my vehicle and therefore often didn't take my medication on a very good schedule. With Sinemet, I can obviously keep Sinemet in my vehicle and therefore take my medication on a better schedule. The only significant side effects I've noticed with the Sinemet are nausea and vivid dreams (including nightmares). Sinemet does a surprisingly good job on my tremors, but doesn't do anything for my frequent urination/urgency issue. I also am not sleeping quite as well with Sinemet as with the MM. In summary, I believe that medical marijuana is the better drug. However, due to the legal and practical issues with marijuana, I am planning to reluctantly stick with Sinemet, at least for the foreseeable future.
  2. I was diagnosed with PD 4 years ago. During that time, I have used exercise as my primary treatment for PD. I credit the exercise with my slow progression during that time. Unfortunately, a few months after I was diagnosed, I foolishly allowed my neurologist to talk me into taking Mirapex. I was lucky to survive this drug. The final straw came when I literally fell asleep at a stop sign while driving. I was fortunate that I didn't kill myself or someone else due to this dangerous drug! The exercise was effective in combating most of the symptoms of PD with one key exception: tremor. Over the past 4 years, my tremor has continued to get worse and is quite noticeable and irritating. Therefore, a little over a year ago, I decided to try medical marijuana, even though I had never used marijuana or any other illicit drug in my life. I found the medical marijuana to be very effective with my tremor and also many other aspects of PD, including urinary urgency/frequency; fatigue; sleep problems; and more. It seemed to be a miracle drug and best of all had no side effects. During this past year of using medical marijuana, I have discovered a couple of significant problems with taking this drug. For one thing, I discovered that medical marijuana is not hospital friendly. I have had a couple of kidney stones during the last year that landed me in the emergency room. Needless to say, PD is made greatly worse by pain and stress, and when you combine that with not being able to take your medicine (medical marijuana) while in the hospital, that can be a real problem. My tremor absolutely exploded while in the hospital. It was as if someone taking Sinemet suddenly stopped taking their medication amid severe pain and stress. Not good! I can only imagine how bad it would be if I was admitted to the hospital for surgery or some other serious condition for an extended period. Another problem with using medical marijuana is traveling. Some states still treat marijuana possession and use quite seriously. I have an upcoming road trip that will cross many states, and using medical marijuana on the trip could be risky. A final problem is the idiotic DUI laws in many states. Many states use a ridiculously low concentration of marijuana in the blood or urine as the standard for determining when a person is impaired. When you consider that this level would be exceeded even if a person hasn't consumed any marijuana for weeks, this could be a real problem. A few months ago, I was pulled over for something, although the cop couldn't really articulate what I had done. I got a warning and was told to "drive safely". When he was talking to me, he noticed my tremor and commented that I appeared nervous. I held up both arms and pointed out that I was only "nervous" on my left side and explained that I had PD. However, if he had done a field sobriety test, could I have passed? My balance is pretty good for a person with PD, but I'm not at all certain that I could pass even though I wasn't impaired in the slightest. So, the bottom line is that medical marijuana is a fantastic drug. Unfortunately, there are some real problems that have to be considered when using it as your primary PD drug. As a result, I have tried a couple of other things which I will detail in other posts.
  3. There are many reasons to think carefully before allowing your neurologist or MDS to talk you into starting PD drugs. Current PD meds only treat the symptoms, not the disease. Are the benefits worth the side effects? Are the PD meds addictive - do you constantly need more and more to achieve the same result? These issues have often been debated on the forum. However, there is another important thing to consider when faced with the decision to begin taking PD meds. When you take that first does of Sinemet or an agonist, you are eliminating yourself from being able to participate in many of the exciting new clinical trials. That is exactly what happened to me in the Isradipine trial. That 4 months that I took PD meds (Mirapex) eliminated me from the Isradipine trial, even though I stopped Mirapex many months ago. The same will be true of the Inosine trial next year. Take PD meds and you're out! I wish I had never taken that first PD med. The irony is that it was only moderately effective and the side effects were worse than the PD, which is why I stopped.
  4. Drug Free

    I have now been drug free for over a week, after SLOWLY titrating my self down and off of Mirapex. I was concerned that the Mirapex was increasing my fatigue. So far, I am staying awake about 3 hour longer in the evening; my sleep is less fragmented; and I am a less fatigued during the day. The down side is that the dreams have all but stopped, which is not good. As for other symptoms, my tremor has slightly increased and rigidity is slightly worse when first getting up in the morning and after sitting for a long period of time. Fortunately, my rigidity was already significantly better due to my aggressive exercise program. My plan at this point is to continue the aggressive exercise program and to remain drug free. The exercise program has done more for my PD than the Mirapex ever did.
  5. Benefits of PD drugs

    I just finished reading Dr. Okun's book "The 10 secrets... " Excellent book! I still have a couple of questions: Do the PD drugs have any other effect on the patients than diminish the symptoms... " I mean, for instance if I know that some days or every day after 8 pm I will be resting and reading on my bed and will not be subjetc to my walking problems, may I simply skip the 7:30 pm dose without any damage to my condition? I am very susceptible to the negative effects of the proteins on my drugs´ assimilation. Eg. if I eat one egg for breakfast (one hour before my first dose), I will immediately notice that my symptoms are not well alleviated, This implies a great difficulty when planning a healthy menu, mostly having the tendency to gain weight with carbs. Do the vegetal proteins are the same as the animal ones for this purpose? Is there something to be done to avoid this conflict? Many thanks, patricia
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