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So Curious

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  1. Please explain why all my posts are "HIDDEN" and subject to being "MODERATED." This process causes extensive delays in the quest for reliable information. It appears that some posts disappear into the Black Hole. If one is accepted as a member in the Forum, it seems that the methodology should be friendlier to that member. When I ask a question, I don't want to wait days or weeks for the answer, or sometimes, never receive an answer Is there any chance of expediting the process? The existence of the forum is wonderful. Thank you for your time and consideration..
  2. So Curious

    Dystonia Pain

    I, also, suffered horribly from the painful spasms of Dystonia. I preferred Zanaflex over Baclofen. I have come across an OTC product that has worked wonderfully for me. This product has allowed me to decrease the amount of prescription medication I take, or use to take on a daily basis. Perhaps, you could discuss using this with your doctor.. This awesome decoction is known as DE-STRESS MUSCLE GEL by AROMATHERAPY ASSOCIATES. Mark, could you go to their website and look at the ingredient list and give your opinion? I rub this on the arch of my foot, between my toes and on my calf. Not much is needed because it spreads easily. The amount of relief it gives me is amazing. Thank you, Mark. Dear afroney, I strongly urge you to avoid traveling down the opioid highway. The decision to do so may intensify and increase your current list of problems. Rather than opioids, try .25 mg Xanax and 1000 mg Turmeric with Black Pepper (for increased absorption) twice a day. Use the DE-STRESS MUSCLE GEL at bedtime.Good Luck. I will pray for you.
  3. So Curious

    Low dose Zonisamide

    Thank you for your reply. I look forward to reading the articles you have provided. As far as the Peyronie's Disease is concerned, I just don't want them calling it PD. Those are our letters, they can use something else like PYD. Truly wish this was my biggest worry. LOL My last full-time job was a travel position, now I am scarred to take a trip. My MDS vetos the idea, stating it takes me too long to recover. One day of activity and the next day I am wiped out. Do you or anyone else have any ticks for travel by car - 7hrs 1-way, 3 nights in hotel and 3hr plane ride plus airport time, 4 nights at relative's apartment. I seldomly leave this building. I need a change of pace. Fifteen years of Parkinson's and I am beginning to get despondent. Thank you and anyone else for suggestions. You are much appreciated. m
  4. So Curious

    Post - Hidden

    I have sent two responses to your last email. One has disappeared and the other is "Hidden." Why is my post "Hidden" and how long will it stay that way? Thank you.
  5. So Curious

    Low dose Zonisamide

    Hello! I know that I wrote an email, but I cannot locate it. I'm not crazy; it must be in the Twilight Zone. My MDS made a few adjustments in my meds. My circadian clock was out of order. It is much better now, but what a difficult battle it was to get back on track. I still have difficulty with cold sweats - after taking a shower and washing my hair and, also, frequently between 5am and 7am. I believe the trigger is the difference in temperature between my chest and skull. Where is the internal thermometer located? Can you recommend any good articles on the effects of Parkinson's Disease on the autonomous nervous system? Have you seen the recent commercials about Peyronie's Disease. They are using the tag PD. I feel like they are invading our territory and will cause confusion. Thaks so much for your help.
  6. So Curious

    Low dose Zonisamide

    I recently added a post, but am waiting for it to be approved. I had so much trouble logging in, that I tried changing my user name to So Curious. Did not help; still have trouble. Will I be sent a notice of approval or disapproval?
  7. So Curious

    Parkinson's Meds Info

    https://www.ncbi.nlm.nih.gov>articles. Mayo Clinic Proceedings. "Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson's Disease" Dear favorite Pharmacist, I thought this would be a simple copy/ paste. Not So! The above web address should get you to correct page, maybe not specific article. Select/copy/paste. My "Tech Neck" is giving me so much pain that I have to shut computer down. Could you please look at my med list and tell me what you think? Topic: Low dose Zonisamide. In pain, gotta go. Thanks
  8. So Curious

    Parkinson's Meds Info

    Dear Sir, Yep, I am still up, researching my favorite topic - Parkinson's Disease.. I came across an article that explains the medicines in very understandable terms. I think all PD patients should read it for their own benefit. It may be accessed at https:www.ncbi.nlm.nih.gov>articles. Mayo Clinic Proceedings. "Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson's Disease" If this article has already been discussed, I apologize. This was my first time seeing it and thought it was lay person friendly. Once again, thanks for all you do.
  9. Hello, I just found out about your foot surgery. I hope you have recovered well. I am having extreme difficulty sleeping at night, but seem to fall into a paralytic type of sleep between 7am and noon. Is it the PD, the meds or has my circadian clock gone wild? I have Parkinson's with Dystonia. Medication Schedule: 7:00am 5mg Rasagiline Mesylate x2 (previously took 1mg,but pharmacist changed for his convenience) 100 Carbodopa-Levodopa-Entcarpone 7:30am 4mg Tizanidine 9:30am 75 C_L_E 12:00pm 75 C_L_E 2:00pm 4mg Tizanidine 2:30pm 75 C_L_E 5:00pm 100 C_L_E 7:30pm 75 C_L_E 8:30 pm .25mg Benztropine MES 10:00pm 75 C_L_E 10:30pm 25mg Zonisamide (Dr. scheduled at 7am, but I thought this contributed to deep sleep state in am. I changed time to pm. Does not help me sleep at night) I also take Alprazolam .25mg PRN and .5mg at 10:00pm. I take turmeric, Omega red, calcium and Magnesium, if I can swallow pills. The Zonisamide is a recent addition. The first two weeks were an adjustment period with severe equilibrium issues and extreme double vision, along with other visual and auditory disturbances. These issues have pretty much resolved and now I just generally feel better. Apparently, the Zonisamide , alone, does not put me in that deep paralytic sleep. I have been up for four days with a total of six hours sleep and a mild panic attack about 4am this morning. A crash should be coming soon. What is the best time to take the Zonisamide? May I have a occasional alcoholic beverage? Any suggestions? I appreciate your help. Thank you for this forum. Deb
  10. So Curious

    deciding about drugs

    I thoroughly enjoy your forum. I have obtained so much knowledge by reading the various posts. It is obvious that you care. Thank you for being here for us.
  11. So Curious

    Side Effect of Lorazepam?

    I just had two crowns glued in because I broke two teeth due to clenching. I have previously had two extractions because fractures went through the roots. I urge PD patients to get a bite block and where it at night.
  12. So Curious

    deciding about drugs

    Hi. I waited two years before seeing a Dr. and getting on meds. I was a big believer in alternative treatments and did not want to put in my body a bunch of chemicals with side effects that would require more chemicals to counteract the effects. Once I started taking the prescription medications, my life improved. It is not always wonderful, needing vigilant observation and occasional to frequent adjustment, but the quality of life on meds is much better than the quality of life off meds. I have been dealing with PD for 15 years. I have to do my own research and figure out what is going on because most Doctors are very reluctant to give comprehensive info to the patient(in my experience). Stay on top of things, exercise frequently and be your own advocate. Good Luck.
  13. So Curious

    Sinemet absorption with applesauce

    Hello! I know I'm late responding, but I hope my suggestion helps you. It works for me. I swallow a Tablespoon of raw honey immediately before swallowing a pill. The meds go down my esophagus much easier and I don't need as much water.
  14. So Curious

    Pain Meds interaction w/PD Meds

    Last year I had two surgeries to repair my lumbar spine. Out of fear of addiction to opioids, I discontinued the use of prescription pain medicine the second week post surgery. I used a combination of ice packs, meditation and turmeric 1000mg. This combination was extremely effective in managing my pain. I wish you good luck.
  15. So Curious

    Panic Attacks or Something Else?

    Hi, Patrick, I experienced what appeared to be a sudden onset of cardiac issues. An evaluation by a cardiologist ruled out cardiac disease. The problem lasted about two months and now happens only once in a while. My hart rate has increased and my blood pressure decreased - a side effect of PD meds. I find that I experience a greater since of anxiety in the mornings. .25 of Xanax helps me stay relaxed. Slow, deep breathing and alternate nostril breathing helps tremendously. Physical exercises are outstanding for dealing with Parkinson's. Also, be observant of how protein ingestion affects your meds; this is a big issue for me. Good Luck.