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Everything posted by PatriotM

  1. Does anyone know if there is a "key" to describe what the total UPDRS score indicates? I looked at an online UPDRS calculator at http://tools.farmacologiaclinica.info/index.php?sid=11767 and my result was 42. It says that 0 is no disability and 199 is the worst disability, but doesn't elaborate further. Before someone points it out, yes - I know that only a qualified neurologist can properly evaluate a patient and assign them a proper number.
  2. In 2013, when this thread started, my UPDRS score was 42 without meds.. Now, 5 years later, my score is 32 with meds.
  3. PatriotM

    Lyme induced parkinsonism

    I got Lyme Disease in 1989. Lyme Disease didn't escape the Plum Island weapons lab until 1975, so it was relatively new in 1989 and certainly here in the Midwest. To make a long story short, I wasn't diagnosed for a LONG time and developed Chronic Neuro Lyme disease. It was NASTY and in many ways worse than PD. My neuro thinks that it's very possible that my PD was caused by Lyme. I didn't really start getting better until many years later when I discovered a MD/ND that specialized in Lyme Disease. She finally got it under control and I seem to be in long term remission at this point. Lyme disease is not a single infection. Ticks carry MANY infections and you have to beat them all to get better. There is a lot of discussion in Lyme Disease circles about Lyme being transmitted sexually.
  4. Try to realize that you're not the only one that is sick. How many people do you know that have a serious disease? I know a woman who lost her leg below the knee to diabetes. I know another that lost all the toes on his foot. I had a tenant that went to the doctor thinking that she had aches and pains, and was diagnosed with terminal cancer. She died a couple of months later. A guy at our Church got pancreatic cancer and died soon thereafter. A huge number of people are living with things more serious that PD. Being diagnosed with terminal cancer is something to be depressed about. PD, not so much!
  5. PatriotM

    I think I have parkinsons

    I agree with Dave N. It doesn't sound like Parkinson's.
  6. PatriotM

    Lyme induced parkinsonism

    Yes. In addition, the symptoms of PD and Lyme Disease are significantly different.
  7. PatriotM

    Lyme induced parkinsonism

    Yes, that's correct. One neurologist and one MDS both have diagnosed me with PD. I would be surprised if either one of them know anything about Lyme induced parkinsonism.
  8. PatriotM

    Lyme induced parkinsonism

    I had late stage, neuro Lyme for many years before being diagnosed with PD. My neuro thought that the Lyme Disease may have caused the PD. However, since no one really knows what causes PD, it's all just speculation.
  9. PatriotM


    Here's the link: http://besthealthherbalcentre.com/testimonials.html They apparently not only cure Parkinson's, but ALS, COPD, Herpes, and just about everything else. Let's see...first time poster.... claims of a cure for just about everything. C'mon! Where's that eye roll Emoji???
  10. PatriotM

    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.
  11. PatriotM

    Bright side I guess

    Good one Stump. That's the first time I've ever seen one of these bright side of PD posts that really is a bright side!!! Not being able to smell vomit - the bright side of PD. LOL!
  12. I go to the MDS every 6 months. As for which MDS to go to, that's hard to say on the internet. Assuming they are both good doctors and up on the latest info, I would go to the closer one. The "gold standard of treatment" hasn't changed in many decades and I'm not sure what would be gained by driving the extra miles. The best treatment advice you'll get from any doctor is EXERCISE!
  13. PatriotM

    27 Male Frightened of YOPD.

    Honestly, I think the referral to a shrink was a good idea. This clearly doesn't sound anything like PD and a shrink might actually be able to help. I also think you need some help with your Google skills if you input rapidly changing hand pain and you got PD.
  14. PatriotM

    Pfizerstopping R&D for PD

    The GOPTAXSCAM is going to make US corporations more competitive, which will bring more jobs and higher wages to the US. The GOPTAXSCAM will mean working class Americans will get a tax cut also. I will also be helping get out the vote this year, but you might not like the candidates I'm pushing. Almost everyone gets to keep more of what they earn. How could anyone be against that?
  15. PatriotM

    Trying Sinemet

    Good to hear from you Christie!
  16. Stephen, It appears to me that your trial of marijuana was too erratic to be a good test. You started; you stopped; took one kind; then another; smoked; then took a tincture, etc. I think your trial would be more effective if you treated it like any other medicine. My recommendation would be to find a high quality marijuana and then make a tincture with it. Start out with a few drops and then titrate up in both dosage and frequency. For example, you might start out at 5 drops once a day for a week. Then, 10 drops once a day for a week. Follow this pattern until you notice adequate symptom improvement. Then, increase the frequency to twice a day for a week. Then, three times a day the next week. Keep up this pattern until you get adequate symptom relief without significant off periods. Obviously, if you're getting high, you're taking too much because now the marijuana is being abused and interfering with your ability to function normally instead of being a typical medication. Just my 2 cents.
  17. PatriotM

    Loving Parent

    EVERYONE has to deal with trials in their life. You and your daughter are no exception. I just came from the family of a woman in her 40's who went to the hospital because her sugar was high and died yesterday of pneumonia. I know another person who went to the doctor not feeling well and died a month later of massive metastatic cancer. She was also in her 40's. Your daughter is alive and should be relatively healthy for years (decades) to come. The news could have been MUCH WORSE! Be thankful that it is only PD. Your daughter needs a mother who will stand behind her - not one who is in a major depression and is adding to her stress. My advice, seek medical help to fix your depression and be the mother that your daughter needs you to be. I wish you and your daughter all the best!
  18. PatriotM

    What drugs? supplements like inisine?

    I've been taking Inosine for quite a while as it looked very promising at slowing progression in the Phase II trial. It is currently in a Phase III trial. My family doctor and my MDS are both supportive of me taking it and are monitoring my Uric Acid levels.
  19. PatriotM

    New guy here - a journey I'd like to avoid

    One important correction: exercise is MUCH more important than medicine. PD medicine only masks the symptoms of PD. Exercise is the only thing shown to slow the progression of PD. Move it or lose it!
  20. PatriotM

    23 year old female worried about PD

    PD normally starts on one side - you have symptoms on both sides. Twitching is not a symptom of PD. PD progresses slowly, even if you have a bad case. It certainly doesn't get worse over a few days. I can't think of a serious disease that has twitching as a major symptom. After the doctor rules out everything serious, forget about your health and go live your life. Worrying about some sickness that you don't have is not a recipe for a happy life.
  21. PatriotM

    23 year old female worried about PD

    It seems to me that instead of seeing a neurologist or MDS, you should be seeing a mental health professional. By your own words, you have some sort of anxiety disorder that is causing you to think you have a serious disease. THAT is the problem that needs to be addressed.
  22. PatriotM

    Call your senator about the awful tax bill

    Pure nonsense! The top 1% of earners pay 45% of individual income taxes. The top 20% of earners pay a whopping 84% of individual income taxes. Forty five percent of Americans pay no taxes at all. How much of a tax break should people get when they pay absolutely no taxes and when many get 'money back' (earned income tax credit, for example) when they didn't pay anything in the first place? Corporations and businesses do not pay taxes. Corporations and businesses pass their taxes on to consumers. When the corporate tax rate is higher in America than other countries, corporations move off shore so that they have lower taxes to pass on to consumers and therefore lower prices giving them a competitive advantage. I don't remember you saying a word about the national debt when Obama was President. He DOUBLED the debt. Why didn't you complain about that?
  23. PatriotM

    23 year old female worried about PD

    I've never heard of twitching being a symptom of PD. Also, weakness in both arms doesn't sound like PD. I would listen to your doctor. You already know that you have extreme health anxiety. Why would this be something different?
  24. PatriotM

    Biggest Unanswered Questions in PD

    Biggest unanswered questions with PD? 1. What causes PD? 2. How do we effectively treat PD? 3. What is the cure for PD? Very little progress in MANY decades!
  25. PatriotM

    Getting to thankfulness

    Why would anyone be thankful for being sick? No, not so thankful for a shaking hand, or PD mask, or memory problems, or word search problems, or...or...or.... Nope, not so much.