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PatriotM

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Everything posted by PatriotM

  1. 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!
  2. 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!
  3. Big News?

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

    What? What?
  5. 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.
  6. 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.
  7. 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.
  8. URSODIOL - A Potential New Drug for PD

    Best of luck on your surgery Rick!
  9. 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?
  10. URSODIOL - A Potential New Drug for PD

    So, it sounds like the Amantadine was the drug that was keeping your symptoms at bay - not TUDCA. Essentially, you're saying that if you hadn't gotten off Amantadine, then you wouldn't have had any progression. The bottom line is that you've had so much progression in only 4 years that you have had to take a high dose of Sinemet and consequently have serious dyskinesia. Now, you're having brain surgery. In my opinion, that's a HUGE fail for TUDCA! Again, my question. What is TUDCA claimed to do?
  11. CBD Oil--Does This Work?

    I tried CBD and it did nothing for me. Medical Marijuana on the other hand was very effective.
  12. URSODIOL - A Potential New Drug for PD

    So, I'm still trying to understand what TUDCA is claimed to do. Rick was only diagnosed 4 years ago and in that short time, despite taking TUDCA, has symptoms that have rapidly progressed. He is taking a large dose of Sinemet and has dyskinesia. His symptoms are so bad that he is having brain surgery. How exactly can anyone claim that this is a victory for TUDCA? Can anyone say in plain English what TUDCA is claimed to do? Obviously, it didn't do a good job slowing progression for Rick. Fred's symptoms got worse when he tried to lower his Sinemet dose, despite taking UDCA. What is the claim? TUDCA does.......what?
  13. Excessive Fragmentary Myoclonus

    I have Myoclonic Jerks that come and go and I can tell you with absolute certainty that they have nothing to do with stress. In fact, they normally happen when I'm completely at rest.
  14. Shifting subjects....who has cut the cable cord?

    The really good news is that the new devices, like Roku, are dirt cheap and there is no contract for services like PSVue. So, we kept our Direct TV while we were trying out Roku. If Roku hadn't worked out, we would still have had our traditional TV service and been out very little by trying Roku. After a month of Roku, we were very pleased with the service and we cancelled our Direct TV.
  15. Husband keeps falling need suggestions

    The real problem is that we have too many pinheads in the government that have nothing better to do than sit around and make stupid laws. These idiot politicians should all be thrown in jail, but I'm sure there is a law against that too. LOL! On a more serious note, my mother in law died after a fall at the hospital. They knew she was a fall risk, but the stupid laws prevented them from doing anything significant to prevent her fall. Short of someone staying with your DH 24/7/365, it is nearly impossible to prevent a fall. I'm sure that your DH has already had rehab to lessen the likelihood of a fall.
  16. New guy here - a journey I'd like to avoid

    I was diagnosed on the very first visit to the neurologist. Although I didn't know what was wrong prior to going to the neurologist, it was obvious something was wrong. I had a very obvious tremor in my left hand. The neurologist did a thorough exam and watched me walk. Then, he matter of factly said "you have Parkinson's Disease" and began writing something on his computer. I wasn't really surprised that I had PD as I knew something was seriously wrong, but I was shocked that he diagnosed me with something this significant so quickly. I asked him how he knew I had Parkinson's. He said that my tremor was the correct frequency for PD; that my left arm didn't swing; that I had a "PD Mask"; that I had cogwheel movement in my arm; etc, etc, etc. There was a poster on his wall with the symptoms of PD and I had almost every one of them! That's how I knew he was right. I didn't know that my left arm didn't swing. I never heard of a PD Mask. I didn't know what the symptoms of PD were (except tremor of course).
  17. Anxiety/Tremor Help

    Your symptoms don't sound like PD. PD normally starts on one side and progresses slowly. Your symptoms are on both sides and have progressed at lightning speed. I can't quite understand why you want PD so badly. You can have mine, I can't say that I'm enjoying it. Be careful what you wish for!
  18. Shifting subjects....who has cut the cable cord?

    We had Time Warner Cable until the bill got to about $150 per month. We switched to Direct TV (which started at $80 per month) and they kept raising the bill until it was about $177 per month. We did not have the expensive sports or movie packages with either of these services. It was absolutely RIDICULOUS! So, we switched to a local internet service that charges $25 per month and bought Roku for TV. With Roku, we bought the Playstation Vue channel, which is about $35 per month. The Playstation Vue channel gives us all the basic channels plus some sports channels. We already have Amazon Prime because we order a lot of stuff online. Being a member of Amazon Prime gives you a LOT of movies, TV series, and much more at no additional charge. There is no extra charge to have all these channels on up to 5 devices (you just need to buy additional Roku devices at about $30 a pop). Best of all, there is no contract with any of this and we can change what we subscribe to each month. We can also cancel any or all of this at any time. I REALLY like it! I don't DVR programs, so I couldn't really comment on that. Most of the shows seem to be already saved to the cloud. In my opinion, Cable TV is going to go the way of the contract cell phone carriers. We were paying about $160 per month for cell phones for my wife and I through Sprint (and their service sucked big time). Now we pay about $80 per month for much better service with no contract or commitment!
  19. 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.
  20. Trying Sinemet

    Dave, My big problem now is that I'm up every 2 hours each night to urinate. So far, I still feel like I'm sleeping enough, but with the MM I was sleeping through the night. I'm considering taking one dose of MM at bedtime to see what that does for me. Of course, that doesn't help me if traveling or in the hospital. So, I may have to go to Flomax. One more drug - just what I need!
  21. I'm still wondering why you think the diagnosis of Benign Fasciculation Syndrome is wrong. I read the symptoms associated with BFS and they look like your symptoms. Why not BFS?
  22. Trying Sinemet

    otolorin, I titrated up from 1/2 tablet to 1 tablet 3 time a day. I will probably titrate back down slightly. The MDS wants me to take enough to control symptoms but no more than necessary. The first dose in the morning seems to be most important to me and I am going to try going back to 1/2 tablet in afternoon and/or evening. I have been effectively treating bradykinesia and rigidity with exercise, so I don't really know if the Sinemet has helped with those. The Sinemet is not working as well as MM for urinary urgency/frequency, fatigue, and sleep. Dave, I have taken Flomax occasionally for kidney stones. I may be forced to talk to the doctor about taking it on a routine basis. I'm encouraged that it is working for you.
  23. Hello Sconklin87, Welcome to the forum! Your symptoms don't sound like PD to me. PD normally starts on one side and progresses slowly. Moreover, PD isn't roving twitches. I've never heard of BFS, but I looked it up and BFS does sound like the symptoms that you described. Why do you think it is PD rather than the BFS you were diagnosed with? I also wonder if the doctors have considered chronic traumatic encephalopathy considering the number of concussions you've had?
  24. New guy here - a journey I'd like to avoid

    I'd say that the tests are to rule out other more serious things, like a brain tumor, MS, etc. Once all that is ruled out, then they will be able to more seriously consider PD. Even if you are diagnosed with PD, I wouldn't freak out. Millions of people each year get a diagnosis MUCH worse than PD. You can still live your life relatively normally with PD.
  25. Not Diagnosed, However Need Advise

    Yes, humans like to know what is wrong with them. However, worse than not knowing is getting the wrong diagnosis. Doctor shopping for a specific diagnosis is a great way to get the wrong diagnosis.
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