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DaveN last won the day on October 31 2016

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About DaveN

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  1. Dr. Okun, I was diagnosed with Parkinson's 3 years ago after a year of uncertainty. I have very little tremor and my symptoms are only on my right side as far as I can tell. My main motor symptom is rigidity and dystonia. I also have a lot of non-motor symptoms that aren't pertinent to my inquiry. I take Rytary 36.35/145mg with the following dosing schedule - 2@6:00am, 2@10:30am, 2@3:00pm, and 3@8:00pm. I slide the last dose a little so I'm taking it at a minimum of 1 hour after I eat. When I start to wear OFF I experience some mild dyskinesia in my hands and dystonia will kick in on my effected side. I also take 10mg of Baclofen twice a day. For the past week and a half I've been experiencing a new symptom. It's similar to RLS but its very targeted to the muscles of my left leg (Gluteus maximus and Biceps femoris). The muscles ache horribly and endless twitch and contract on their own. It's really becoming quite uncomfortable. It seems to show up about 30 minutes prior to my next dose but is really bad in the evening. I walk 3 to 5 miles on the treadmill every afternoon. I tried supplementing with a 1/2 pill of 25/100mg Sinemet but that only caused me to have horrible dykinesia and dystonia. The extra C/L did alleviate the symptoms but the dyskinesia and dystonia is just as bad. I don't understand why this new symptom is appearing on my non-effected side. I'm not even sure if this symptom is from the Parkinson's or a new symptom from the nerve damage that I have in my lower back. Do you have any ideas what I might do to alleviate this or what might be causing this problem? Dave
  2. Bill, i want to add some helpful advice that my pain management doctor gave me several years ago in regards to my sleep. As my Parkinson's progresses, it seems that it has targeted my ability sleep through the night. I was getting really frustrated because of this which only intensifies the effect. My PM suggested that when I wake up, just accept that the event occurred and don't dwell on it. It took some time to adopt this carefree attitude but now when I wake up I just roll over, relax, and clear my thoughts. I usually fall back to sleep within a few minutes. The exception to this rule is when I have to see a man about a horse where I frequently find myself falling asleep standing in front of the porcelain god or sitting on my throne. Don't worry to much about the milligrams. Look at it this way - supposably Parkinson's comes with a nice dose of depression, so Trazodone can help combat both the sleep and depression symptoms. So far I have not experienced any depression associated with PD or the chronic pain that I suffer with on a daily basis. i'm gonna try and catch some ZZZZZZ's before 5:00am rolls around. Sleep well my good man. Dave
  3. Bill, It seems you have a major fear of Trazodone. I've been taking it for the last 8 years, long before Parkinson's entered my life. I used to experience the hangover effect you're referring to. I take 100 mg. I normally go to bed around 11:00pm and I'm up at 5:00am getting ready for work. I take the Trazodone at 9:00pm, two hours before bed. I find that it helps me relax and unwind from my day. Dave
  4. My sense of smell was reduced to only rancid odors. A port a potty, cigarette smoke would make it through but the smell of a rose or a great meal cooking in the kitchen were not to be. I have been taking C/L for a Couple of years now and I'm happy to report that some of the nicer odors are being processed once again. dave
  5. Feisty, i can only give you suggestions on the constipation side. I've been dealing with that issue long before I was diagnosed with PD. I've been taking pain medications for the last 10+ years. PD just makes the problem worse. I used to live on stool softeners but I discovered a long time ago that if you use them for an extended period of time they will actually have the opposite effect on you. Miralax and the applesauce (1 tbsp applesauce, 3 tbsp wheat germ, and a dash of cinnamon) concoction seem to work the best. I still go through bouts of constipation that have lasted 7 days before I see any movement. Being that it's Easter, I will tell you that I have found a lot of jelly beans can get things moving. Hope you feel better. Dave
  6. pdmanaz, You are not the administrator of this forum, just a user like the rest of us. The administrators have stated that this area is unmoderated. If you don't like the content, then don't read it. It really is as simple as that. If something really offends you, report your objections to the forum administrators. If you want a moderated forum for PD, shell out some money and start your own. This forum is provided to us free of charge. Dave
  7. Roger, Whats your problem? If these religious zealots want to discuss religion and how it helps them get through the day, that's there prerogative. I do not have their belief system and Linda's thread has no effect on my life. Is it any different than the Good Morning thread that rarely discusses PD issues or the Medical Marijuana thread that talks about the wonders of MM for every disease known to man but rarely mentions PD. This is an Open Forum and if the administrators have not closed the topics, I guess they have no issue with them. Your objection to the thread is because you object to their religion. Are you afraid they're going to convert you? Just ignore the subjects you don't like. Life is to short to worry about what Linda is writing about. Dave
  8. Luke, As you state in your post, there are other diseases that can mimic Parkinson's. Are you taking any medication for your symptoms? If you're thinking of having another DaT Scan, I would wait at least two years from the original one. Basically give the disease some time to progress. If that one comes back normal, odds are you having something other than Parkinson's. The DaT Scan just determines if you have a dopamine transporter problem indicating that you have PD. Another disease that mimics some of the symptoms of PD is Dopamine Responsive Dystonia (DRD) but will have a normal scan. If you do have PD, its not going anywhere. Short of exercise, there is nothing that can slow down the progression. Take a deep breath and try to relax. Live your life while you still can. Dave
  9. Lu, I live with chronic pain but I'm not taking methadone. I have read it's a very effective pain medication. You need to set aside the stigma of what they normally use the drug for. Give it a try. It's my understanding that it's a very inexpensive drug for pain relief. Dave
  10. Bill, I think you will be pleasantly surprised in how much BIG will help.
  11. Bill, that shouldn't gross anyone out. That is by far my most annoying symptom. When I'm ON, I pee like someone in their late 50's, but when I'm OFF it's like this major production that takes an excessive amount of time. Glad the Sinemet is starting to help. Dave
  12. Here's a question for the forum. I was putting away the dishes this morning when I noted to my wife that I've broken a lot of glasses over the past year, six to be exact and a glass water bottle. My wife purchased some heavy glasses which I broke three of them and the other three were a lighter style. What type of drinking glasses are you using in your home? Would be very interested to hear from some of the caregivers as I'm sure they've been through the broken glass syndrome already. Thanks. Dave P.S. I'm not ready for sippy cups just yet.
  13. You have Parkinson's, taking L-Dopa is not an issue. My question is, what does this drug do to a normal person? If you have to take pills, they should at least treat the underlying condition.
  14. Roger, I agree that the L-Dopa challenge is probably the gold standard, but you have to have visible symptoms that the doctor can see for it to work. My challenge was in his office and they did a thorough exam of me prior to the challenge and a second exam an hour after I took C/L. Not only did the challenge demonstrate improvement within my follow up exam, they explained to me some of the subtle changes that I wasn't aware of. My doctor is a firm believer that this test can be administered in the office. If no improvement is detected on the first dose, he repeats the test a second and maybe a third time upping the dose each time. If you have PD, the C/L will eventually help some symptoms. I think sometimes a patients symptoms are questionable or borderline. The imaging tests aren't experimental and can help confirm the diagnosis for the patient and the practitioner. Doing the same test 5 to 6 times over a long period of time in hopes that the result will finally change is insane. Do you think it's wise to take these drugs over the long haul if the diagnosis is in doubt? Dave
  15. Ed, I had some of the issues you speak of with Sinemet. My problem was that it's effectiveness ramped up quickly and fell off just as fast. There's a lot of things you can do, such as moving doses closer together. My doctor ended up switching me to Rytary and even that took about a year to settle on a good dose and schedule. Rytary is an extended release version of Carbidopa/Levodopa whereas Sinemet is an immediate release version of C/L. Talk to your doctor so the two of you can figure this out. Dave