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Everything posted by PatriotM

  1. 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.
  2. By chance, are you selling vibration machines?
  3. “A democracy (republic) cannot exist as a permanent form of government. It can only exist until the voters discover that they can vote themselves largesse from the public treasury. From that moment on, the majority always votes for the candidates promising the most benefits from the public treasury with the result that a democracy always collapses over loose fiscal policy, always followed by a dictatorship. The average age of the world's greatest civilizations has been 200 years. - Alexander Fraser Tytler
  4. There is no controlling healthcare costs as long as the government is involved. Health care and health insurance are just like higher education and student loans. Once the idiots in the government get involved and begin pushing money at a business, the costs always skyrocket. Get the idiots in the government out of higher education, student loans, health care, and health insurance and the costs will come down. A price freeze will not work either. When you freeze prices, you cause scarcity.
  5. Need your opinion...on Retirement disability

    Stu, It seems to me that many of your problems may be the result of your weight. Diabetes, sleep apnea, high blood pressure all could be the result of the weight. In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program. Additional medical problems make PD much worse. If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD. I would suggest talking to your doctor about your weight issue and how it might affect your PD.
  6. How did you talk to others?

    First, forget the bucket list. You are not close to "kicking the bucket". Next, don't give up on the plans for your life. Has anything really changed since your diagnosis? You can live a long and fruitful life. Then, don't be in a hurry to tell others. You are not the only one with problems. In fact, almost everyone has problems and many have problems worse than yours. I have a young nephew with a brain tumor. One of my tenants felt sick and went to the doctor. She had metastatic cancer and died only a few weeks later. What are our PD problems compared to that? Furthermore, people don't want to hang around with people that are sick. Talk too much about your PD and your friends and family will slowly disappear. No-one wants PD, but MANY people have it far worse. Live your life as you planned and don't let PD get in your way!
  7. Restore Gold

    I was diagnosed 4 years ago and can still use chopsticks without taking any PD meds, RG, or UDCA. PD usually progresses slowly. So, when people really want to believe that something works to slow PD, they can convince themselves. Just look at the forum, people have convinced themselves that stem cells, UDCA, TUDCA, various supplements and many other things have slowed or stopped their progression. Worse yet, some people play into the desperation by making money selling snake oil to the sick.
  8. Phase 1 Trial of New PD Treatment: My Experience

    Thanks for the info ShopGuy. That was an excellent explanation and exactly what I was interested to know.
  9. tensing of muscles

    Why can't Linda post what she wants? If anyone doesn't like her posts, they can simply ignore them. Easy!
  10. Better Care Health Act

    Not true. Medicaid would DOUBLE in the next ten years under the Senate bill. Unfortunately, everything can't be free despite how much people want it to be. The last thing this country needs is another expanded entitlement. Sooner or later, the chickens will come home to roost.
  11. Phase 1 Trial of New PD Treatment: My Experience

    I'm curious about the side effects of the immunotherapy that the researchers discussed with you. Does immunotherapy cause a risk of developing cancers? Does immunotherapy cause a risk of healthy organs being attacked by the immune system? Other possible side effects? I'm curious because I see all those commercials on TV where the possible side effects for various treatments are doom and gloom. Thanks for posting on this important trial.
  12. Hand tremor when nervous, anyone else?

    I got pulled over a while back. The cop noticed my tremor and said that I looked nervous. I explained that I had PD and he didn't say anymore and gave me a warning. However, if he had believed that something more was wrong and demanded that I walk a straight line, I'm not sure how that would have gone. Therefore, I now carry a copy of my diagnosis in my vehicle so that I can prove that I have PD.
  13. Hand tremor when nervous, anyone else?

    Ditto BigRingGrinder + my left hand tremors when I write (with my right hand). Holding hands during prayer - yes. Talking to someone - yes. I don't even know that you could call these things stress. Like BigRingGrinder said, it seems more like multi-tasking to me.
  14. What is considered a 'Rest' tremor?

    I don't think it matters if your hand is at rest. If you don't have a tremor, then you don't have a resting tremor. A twitch is far from being a tremor. Add 17,999 more twitches to your solitary twitch each hour and you've got yourself a tremor. My suggestion is to accept your diagnosis of Essential Tremor; go live your life; and be thankful that you don't have PD.
  15. What is considered a 'Rest' tremor?

    A resting tremor occurs when you are at rest, as opposed to a tremor that occurs when some posture is held or some action is initiated. I have tremor dominate PD and my left hand tremors most of the time when I'm not doing anything (and not medicated with medical marijuana). When I do something, like working in the garden, I usually don't have a tremor. If my hand is moving, my tremor is gone, but only while my hand is moving. Within seconds of stopping the movement of my hand, my tremor returns. Also, my tremor is not a twitch, it's a continuous tremor at about 5 Hz (18,000 shakes per hour). If I'm stressed or cold, the amplitude of the tremor is increased.
  16. Ropinirole dosage to induce hypersexuality?

    If a drug is causing you so many problems, why are you taking it? Surely these side effects are worse than the disease.
  17. mirapex .75mg

    loveya1971, The first thing I would suggest is to ask yourself if you really need medication this soon. It might be smart to start with a PD exercise program first and see how much exercise will improve your symptoms. A few months after I was diagnosed, I let the neurologist talk me into taking Pramipexole. In retrospect, I certainly didn't need it and regret letting the doctor talk me into taking it. It caused severe fatigue. I couldn't sit down without falling asleep. I would eat with my eyes closed. I would talk on the phone with my eyes closed. I was a zombie. The final straw came when I fell asleep at a stop light. I am lucky to have survived this dangerous drug. In the nearly 4 years since this incident, I have not taken any PD meds (other than a couple of months of Pramipexole) and am doing MUCH better. I now get daily exercise, including walking at least 12,000 steps a day and have found that to be critical in maintaining good health with PD.
  18. Newly Diagnosed

    I don't spend much time sitting in the corner and I've never been stoned. If I did want to get stoned, I could just pull out what's left in my bottle of Mirapex. Mirapex just about puts me into a coma, even while driving, which is why I stopped taking it. As for marijuana being illegal in the eyes of the Federal Government (and many states), that's exactly right and completely ridiculous (like just about everything the government does). A person can legally take Mirapex, or oxycodone, or any of a hundred other dangerous prescription drugs that are minimally effective but have huge side effect, but can't legally take medical marijuana which is very effective and has no noticeable side effects.
  19. Newly Diagnosed

    loveya1971, The first thing to do is take a deep breath. Absolutely nothing has changed simply because you were diagnosed with PD. You are no worse off the day after you were diagnosed than you were before being diagnosed. Were you crying and feeling lost in the months and years before being diagnosed? The latest thinking is that people likely have PD for 20 years before being diagnosed. You've likely had PD for 2 decades and didn't even know it. Nothing has changed, you still have PD. Next, realize that you can and should get BETTER! That's right, better! Now that you know you have PD, you can start treatment. No, I'm not talking about taking any of the dangerous PD drugs that are often worse than the disease itself. I'm talking about EXERCISE, which is the only thing shown to slow the progression of PD. Furthermore, starting a PD exercise program should improve your symptoms and help you to feel better than you have in years. When I was first diagnosed with PD, I walked like a 90 year old man. I had to hold both rails to walk down the stairs in the morning. Daily exercise fixed that. I now walk a MINIMUM of 12,000 steps a day (about 5 1/2 miles) and usually walk a lot more than that. Last week, I had two days that I hit 30,000 steps. When you are diagnosed with PD, you have a choice. You can sit in the corner and cry; go get a handicap sticker; buy a walker; and decide that your life is over. OR, you can decide to take your life in your own hands and fight!!! You can start a PD exercise program; eat healthy; maintain a positive attitude; and live your life normally. The choice is YOURS!
  20. Cannabis CBD Oil

    Yes, it was hemp based and didn't do anything that I could discern. The downside of medical marijuana is that it is not legal everywhere. Therefore, if you use it as a primary treatment for PD, you are limited where you can go, or have to go without your medicine, or are risking criminal penalties. It's beyond ridiculous!!! I can legally take Mirapex which causes severe fatigue, hallucinations and more (very dangerous for driving). I could legally take Amantadine which also has nasty side effects. I could legally take a prescription narcotic for pain. However, in many places you can't take medical marijuana which, as far as I can tell, has absolutely no side effects and is very effective. RIDICULOUS!
  21. Cannabis CBD Oil

    I tried CBD oil and couldn't see any benefit at all. A marijuana tincture relieves my tremor, urinary frequency/urgency, sleep problems, fatigue and more.
  22. Social Security Disability - Trump's Budget

    There are no cuts being proposed. Only slight decreases in the massive projected increases. There will still be massive increases in spending on Medicaid, Medicare, and just about every other government program.
  23. Social Security Disability - Trump's Budget

    I forgot one little detail. NONE of these "cuts" are cuts at all. They are cuts in the anticipated increases in these programs. For example, Medicare will nearly double over the next ten years under Trump. Likewise, Medicaid spending will also dramatically increase under Trump. Only in Washington D.C. are dramatic increases in spending called a "cut".
  24. Social Security Disability - Trump's Budget

    SNAP (food stamps) is one of the most abused programs in this country. Many people receiving SNAP sell their card and then pickup their food at the food bank. Cutting 30% isn't nearly enough. Yes, it's acceptable to me. A huge percentage of people on Medicaid are just plain lazy. I see it every day. CUT IT! People like Trump that are in real estate often pay little or no income tax. However, they pay huge property taxes that hourly workers don't pay.
  25. Social Security Disability - Trump's Budget

    I have many tenants that have 100% of their Section 8 rent paid by the government. They get a utility allowance. They get "free" food from the food bank. They have a "free"Obama phone. They have "free" healthcare. The waiting list is about 3 years here for Section 8. I could easily see that they would have more disposable income than someone making $60,000 a year and paying their own way. Here in the USA, we have the richest "poor" people in the world. They also have the largest big screen TV's on the planet.