Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by PatriotM

  1. 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!
  2. 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.
  3. 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.
  4. 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?
  5. 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?
  6. 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!
  7. 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.
  8. Protandim

    Protandim is a Nrf2 Synergizer. It's basic purpose is to reduce oxidative stress. In other words, it basically functions as an anti-oxidant. I took it for several years as part of my Late Stage Lyme disease treatment. To the best of my knowledge, it does absolutely nothing for tremor.
  9. Attorney General Sessions hints that he may go after Medical Marijuana growers and Dispensaries. BOO! http://www.thedailysheeple.com/ag-jeff-sessions-suggests-prosecutions-for-marijuana-growers-sellers-and-users-in-legalized-states_112017
  10. I participated in the Fox Insight study. The watch and app frequently didn't stay connected and the technical support was TERRIBLE! It was a great idea but not run very well.
  11. Need help, Hate knowing its Parkinsons

    ALaurenLB1, Your symptoms don't sound like typical PD to me. PD usually starts on one side and progresses slowly, very slowly if you're in your 30's. Your symptoms seem to be on both sides, which is not typical for PD. I certainly would not tell your parents that you have PD. It doesn't sound to me like you have PD. I would not join a local PD support group. It doesn't sound to me like you have PD. I wonder if you were convinced that you had MS before it was ruled out? Take a deep breath. EXERCISE. See a MDS and let them make a diagnosis if that is appropriate. It is important that you get the RIGHT diagnosis; not just any diagnosis. If you are diagnosed with PD, you will quickly discover that there is no medication that does anything to modify the course of the disease. All we have are medications that hide the symptoms and all have side effects (some of which are worse than the disease). Good luck and let us know what the neurologist says.
  12. latest news on healthcare cuts coming

    It is absolutely inexcusable that the government (i.e. my tax dollars) are being used to pay for anyone's insurance. There is no "right" to insurance or any duty for anyone to have insurance. If a person doesn't want to pay for insurance, then they should accept the consequences. Get the government out of our insurance; out of our healthcare; and out of our lives!!!
  13. “On” when I should be “off”

    MM, Yes, both the Sinemet and medical marijuana do a good job on my tremor. If the Sinemet alone isn't helping yours, then I think your idea of trying a combo is a good one. It may just be a matter of getting the right combo.
  14. “On” when I should be “off”

    I don't know about the combo of Sinemet and MM. I haven't taken any MM since I started the Sinemet a few months ago. I certainly don't need both.
  15. “On” when I should be “off”

    MM, I'm taking one 25/100 C/L three times a day. The deciding factor was when I was in the ER with a kidney stone shaking like crazy. I realized that I had no medical options, since the hospital doesn't give medical marijuana out to shaking patients. What would happen if I had a real medical emergency and needed to be in the hospital for an extended stay? I also have a multi-state trip coming up, and taking medical marijuana along for the trip would be a legal risk. The C/L does a good job on my symptoms, although it doesn't cover as many symptoms as the medical marijuana. It also has more side effects than the medical marijuana. Having said that, the C/L is more practical.
  16. “On” when I should be “off”

    I too awake refreshed and "on" in the morning before taking any medication. It lasts an hour or two. In other words, I think that we're 'on when we should be on'.
  17. Boy am I new to this

    Hi Meriban, Welcome to the forum! It sucks that you've been battling cancer and now have PD. However, if you've had a 5 year battle with cancer and won, PD should be a breeze! Unfortunately, doctors in the USA are little more than drug pushers. Go to the doctor --- get a pill. Have any problem --- the doctor will push a pill. PD is an incurable, progressive, degenerative disease. It can not be cured or modified by a pill. There is not yet a pill that can even slow the progression of the disease, although there is at least one promising Phase III trial underway right now. The only thing shown to slow the progression of PD is exercise. If your doctor didn't discuss the importance of exercise with you, I'd find another MDS (movement disorder specialist). I'm about your age and like you had a serious disease (Late Stage Lyme Disease) before being diagnosed with PD. Like you, my neurologist didn't say a word about exercise or anything else that might be beneficial. I fired him and found a doctor that knows that exercise is better than any pill. My MDS didn't push any pills on me and in fact doesn't recommend medication until really needed. I have observed that there are two kinds of people when it comes to dealing with a serious disease. The first kind is devastated by the diagnoses; goes into a huge depression; and sits on the couch waiting to die. The second kind (people like you) declare war on the disease; gets moving with exercise; and continues with life as normal. You are a winner! KEEP FIGHTING AND KEEP MOVING!
  18. http://pdrecovery.org/updates-latest-research/

    Twisted ankle causes Parkinson's Disease - sounds kind of ridiculous. On the other hand, it's probably as good a guess as any of today's researchers have. The bottom line is that no-one knows what causes PD. A twisted ankle; a stubbed toe; or a nasty corn might just be it! So, what it the cure? A good pedicure or a foot massage? LOL!
  19. Big News?

    There's a cure right around the corner - just as there has been for the last 40 years.
  20. Problems that repeat

    What? What?
  21. PWP hurricane victims?

    These disasters are a good reminder that PWP should keep a reasonable supply of medication on hand at all times. Of course, it's also smart to have food, water, and defensive equipment at hand. Every generation in history, until the last 2 or 3 generations, had supplies in their pantry or root cellar for bad times. In the event of a long term loss of the electric grid from a solar flare, EMP, or cyber attack, DOD estimates that 95% of all Americans would die in the first year. As you could even see in the southern USA, in a disaster, the sick, weak, elderly, and very young start dying almost immediately. People died in nursing homes after just a few days of electric power failure. A few days more, and people on dialysis would die. A little longer, then diabetics would start to die. As we can see in Puerto Rico, in a disaster lasting a week or two, food and water supplies run out. In the cities, the riff raff begins looting almost immediately. Good idea to be prepared, especially if you're a PWP.
  22. CBD Oil--Does This Work?

    All we are doing with any of these meds is treating symptoms. None have been shown to alter disease progression. Therefore, which drug you take (C/L, Mirapex, Amantadine, medical marijuana, or anything else) is totally irrelevant. The only thing that is important is to alleviate the symptoms with minimum side effects. I took medical marijuana for an entire year and found it to be a better drug than C/L. It treated more symptoms for me than C/L and had no side effects. Having said that, I am now taking C/L because of the legal and practical implications of taking marijuana. I do think pdmanaz is correct that blending C/L with MM is a good strategy. If you suddenly end up in the hospital or need to take a cross country trip, taking C/L will allow you to stay treated, even if you have to temporarily increase the dose of C/L. The rest of the time, you could take some minimal level of C/L and the MM could do its job without risking the side effects of C/L.
  23. 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.
  24. URSODIOL - A Potential New Drug for PD

    Best of luck on your surgery Rick!
  25. URSODIOL - A Potential New Drug for PD

    Fred, I am simply trying to determine what exactly you are claiming in regard to (T)UDCA). It didn't seem to slow Rick's progression or to even mask his symptoms. Otherwise, why is he taking such a big dose of Sinemet; why does he have dyskinesia; and why does he need brain surgery after such a short time since diagnosis? In your case, you couldn't lower the dose of your own Sinemet without your symptoms recurring. So, what does it do? It doesn't appear to slow progression or even treat significant symptoms, so what does it do?