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Everything posted by adams234

  1. adams234

    For those that think C/L causes Dyskinisia ?

    McCall I feel the same as you. I have been on C/L for 4 years, Currently taking 800 mg a day and I have no problems with dyskinesia. From what I under stand is everyone reacts different and everyone's progresses differently. I read a recent research paper that attributed Levodopa dyskinesia to the loss of another neuro transmitter that occurs once the disease has progressed to a point. The transmitter that is lost is a responsible for metering the reaction of a movement in the brain. Once that control is no longer there the signal is transmitted unchecked and you end up with wild movements of the body (AKA) dyskinesia's. This study was moving into the next phase to prove their preliminary findings. I have yet to hear any results Blessings Adam
  2. adams234

    Working with Parkinson's?

    Everett I was diagnosed 4 years ago and I am still working full time. It is all about managing stress and keeping moving. I plan to work as long as my body will let me. Hopefully another 8 to 10 years. Sounds like you are doing the right things. Keep it up and keep moving. Blessings Adam
  3. adams234

    Welcome to the club

    I am with stump as well. This summer we are building a custom Vardo (sort of like a travel trailer) to camp in. I am starting a You tube channel called the Shakybaker, and I intend to keep traveling as much as possible. Take one step at a time. Celebrate all the good moments and the bad ones wont seem so bad. Blessings Adam
  4. adams234

    Welcome to the club

    I think we wish we could all give this membership back. First year is rough, but once you realize you can still do things you will feel much better. Try not to let your mind focus on what the future is going to look like. None of know. Just plan for now and hope for the best. The future will be what it will be. Blessings Adam
  5. adams234

    Welcome to the club

    Superdecooper, I officially welcome you to our club that you did not want to join. We are glad you are here and being proactive. Once you get a good MDS hang on to them for as long as possible and work with them to get a good regime going. Eventually you will feel in control again and you will reprioritize things and the turning of time wont feel so daunting. Best of luck to you Feel free to ask any questions Adam
  6. adams234

    Just Deny Everything

    I think Stump, Superdecoop, and Nosoup.. have all given excellent advice. I disclosed to my immediate boss and to my department. Since I work in a nursing home everyone understands what I have. I have not said anything to HR and will not say anything to them till the time comes I may need to make adjustment to my work life. So far my meds have kept me feeling really good and PD has had little affect on my performance. The good thing in my case, my boss has been really good about adjusting my schedule around doctors appointments and such thing because I am part of a study. Again, look at the situation you are entering. I would say, offer nothing until you feel you should. Good luck Adam
  7. adams234

    Passing out

    Just curious, are you on a dopamine agonist? I know a lot of people who have been on the agonist suffer from what is called sudden sleep attacks. Kind of mimics passing out but you fall asleep with out even realizing or feeling it come on. It can happen with sinement (AKA Carbidopa/Levoodopa) but in general sinement is better tolerated and it happens less often with this medication. Might be a good question to post in the ask the doctor section. Let him know what meds and the schedule you take them on. He may be able to steer you in a better direction. Good Luck Hope you find the answers you seek. Blessings Adam
  8. adams234

    Coffee, tea or alcohol?

    I have found that if my symptoms are not covered as well with my regular medication I can usually get a good response if I have a cup of something with caffeine in it. I gave up my addiction to caffeine along time ago so one caffeinated drink really helps. As far as Alcohol, I am a CHEAP date. One drink will do me. I have to nurse it for a long time.
  9. adams234

    Dystonia and Parkinson's?

    I did not. Seemed to start about six months after starting meds. For the most part it is not a bothersome side effect because it only happens when my meds are wearing off.
  10. adams234

    The period at the end of the sentence.

    May the God or Gods that you celebrate carry your husband to the heavens, He is free now of the chains of Parkinson, Free to dance with those who await his arrival. He is also free now to watch over you till he meets you again. Amen My deepest condolences and love to you and your family. You are a hero in my book. Only those with the toughest of character can stand the test of time and this disease to watch someone slip away and love them till the bittersweet end. Care Giver is not a just a label, It is the name of angles and super humans who walk this earth to help those with love, kindness and grace when those cannot help them selves. Blessings Adam
  11. adams234

    Dystonia and Parkinson's?

    Matt, To answer your Dystonia question. Yes Dystonia does happen during treatment of PD. I started having issues with Dystonia once I started on medication. When my meds wear off is when it kicks in. First my feet will curl or turn inwards. Some times my right hand will tense up. This last much longer than 30 seconds and can usually be stopped by intentionally moving the effected body part. (in my case) others may have different reactions. I was diagnosed at age 35 so I guess the statement Young onset are effected more often holds true. Your second question. In general, PD symptoms first show up on one side of the body before showing on both sides. In my case, when I was diagnosed all of my symptoms were on my right side. My right arm stopped swinging when I walked, my right foot would drag occasionally during walking, I had a small tremor in my right fingers, and rigidity was noted in my right arm during my exam. After some time symptoms will begin to appear on the opposite side. I now have some tremors in my left leg as well as some dystonia in my left leg and arm. So yes, PD would be worse on onside over the other when first presenting. Over time both side become effected. Hope this helps
  12. adams234

    Young onset PD testing

    As far as my sense of smell goes I feel it is unchanged. I have not had anyone say something smells that I could not smell. I do have PD, and a positive date scan with a great response to C/L. So I guess the whole smell thing is not a guarantee that you have PD or not. Blessing Adam
  13. adams234

    Doctor says symptoms 'consistent with' PD

    Pixel Paul, Sorry for joining in the welcome party so late. Your story sound familiar to almost all of us. I hope you find some relief from the Azilect as I did when I first started it. Hang in there, the first year is rough. Just know that the life you thought you would have hasn't ended, it just looks different. I can honestly say that after I finally adjusted to my new reality I am more happy now than I have ever been. Blessings Adam
  14. adams234


    I see you said that you had symmetrically moderate reduction. I wonder if the doctors suspect something other than Parkinson's. From what I have researched and heard from my MDS generally people have reduced uptake on one side greater than the other. Example, My DatScan came back with "Moderate reduction on both sides with the left side greater than the right. Impression is consistent with a diagnosis of Parkinson's based on clinical results." I am not a doctor and this is just my opinion based on my limited knowledge. I would post your results in the ask the doctor section with a list of your symptoms and see what his advice is. Blessings Adam
  15. adams234

    Young onset PD testing

    Unfortunately the best and most common test is to try Levodopa, if you respond with good results then they are sure you have Parkinson's. There is a DatScan, it is very expensive if you don't have good medical coverage. The DatScan will not say you have Parkinson's but it will rule in or out other diseases that can mimic Parkinson's. A doctor will not order one unless they are not sure what you have. If everything in the clinical exam points to Parkinson's type of disease they will try the Levodopa first and see how you react. If your side effects are nausea try eating some crackers or toast when taking your pills. I agree with LAD, a question in the ask the doctor forum may give you a better answer. Hope this helps Adam
  16. adams234


    Doubleup, The first Neurologist I saw was a general neurologist who had and treated many Parkinson's patients. I went to him after I noticed that my right arm had stopped swinging, my right hand would curl up into a fist, and I had stiffness in my neck and shoulders. I also noticed a minor tremor in my right middle finger. He said he strongly suspects that I have PD after going through a battery of test. He then recommended that I go to the University of Rochester's Movement Disorder Clinic. His hope is they would want to do a DatScan, the only test he did not do and did not have the ability to do. He was also hoping there would be a study I could join since I was young and a rare case. The first MDS I saw I was not impressed with. She did order the DatScan because of my young age to make sure I was not have some other issue. I went through with the DatScan and received a copy of it in the mail a week later. It also included a results letter from the examining neuro. It stated that my scan was consistent with PD if clinical results suggested PD as well. I then got a call from the clinic asking if I would like to join a study. I said yes. On my first study appointment they did the clinical exam then looked at the DatScan results and accepted me into the study. The study lead neurologist was accepting new patients so I had her become my main MDS. Once I was part of the study I had to remain off meds till I had completed six months of the study. It was a struggle but I stuck with it. Once I had my Six month study appointment we started with Azilects then 2 months later added sinement or C/L. I felt so much better. The search is tough, some much of the diagnosis process is subjective and base solely off of a neurologist opinion. I hope you find the answers you are looking for. Can I ask. Are you having other symptoms as well as the tremors?
  17. adams234

    Sinemet Question

    I agree with gardener totally, I did significant research before deciding to take Carbidopa/Levodopa aka sinemnet. There is no evidence that suggest C/L is solely responsible for dyskinesias based on the amount you take in a given day. I have met and talked to several people who take over 1000mg of c/l a day and do not have dyskinesia. Dyskinesia happen with a combination of disease progression and use of sinement. One study that is in its infancy suggest that dyskinesia happen when a chemical in the brain called GABA starts to diminish because Parkinson's disease has progressed to a point to affect its production in the affected part of the Parkinson's brain. The brain Chemical GABA acts like a throttle on a car, it meters how much dopamine reaction is need when the brain sends a signal. When that is no longer present the signal gets over intensified and you get dyskinesias. Remember, when big pharma came up with there synthetic dopamine called agonist, they spent millions discrediting C/L so they could reap billions in profit for their new creation with terrible side effects. This stigma still exist today even though big pharmas studies have been disproven. Want you to have the whole story when you make your decision Blessings Adam
  18. adams234

    Sinemet Question

    Tjon, I agree with the above statement from Beau's Mom. In my 2.5 years experience with sinement I can tell you that I get about 12-15 hrs of on time with my current regime. I take 1.5 pills of 25/100 CL aka sinement and 1mg pill of Azilect at 7am then I take 1 pill of 25/100 CL every 3hrs till 7pm. When I go to bed at 10pm I take a 1/2 pill of regular CL and a pill of 50/200 extended release for over night. This has worked very well and I can say that for about 10hrs of the day I am 95% free of symptoms then in the evening when I am tiered I am about 75% free of symptoms till bed. My thinking is why be sore and stiff when I don't have to be. I hope this helps. Feel free to ask any question you would like. Good luck Adam
  19. adams234


    Thanks for correction. My mistake. I wanted to type will not but forgot the not in my statement. Good catch. I agree with every statement on here. The Scan is expensive and not conclusive. I did it because at the time I had great insurance that coved the whole thing with a $20 copay. It also helped me get into the isradipine study and find my current MDS. All was not lost in having it done in my case.
  20. adams234


    A DATScan is used to help differentiate between essential tremor or a possible parkinsonian symptom. On the day of a DATScan you will go in 4 hrs prior to the actual scan. They will give you an iodine drink that taste like stale water and then inject you with a radioactive tracer. It is not enough to hurt you. Then you go home and 4 hours later you come back for the scan. In that 4 hrs the iodine stops you thyroid from gathering the radio tracer and allows it to pass the blood brain barrier. Once in there the radio tracer attaches the dopamine uptake cells in the substansia nigra. When they do the scan using gamma radiation it shows up as bright spot on the picture of the brain. They then compare the size shape and brightness to determine if the brain has a loss of dopamine cells or if something else is going on. Correction It wont tell your doctor It will tell the doctor if you have Parkinson's or not but will help them determine a better diagnosis based on what they have found clinically. Hope this helps Blessings Adam
  21. adams234

    Rasagiline and other drugs

    Mary C, You are correct. Azilect stops the cells in the brain from reabsorbing unused dopamine and breaking it down. Thus raising the available dopamine to be used. As far as Carbidopa, it is added to Levodopa to help ease nausea from taking levodopa straight, it also stops an enzyme in the blood that breaks down levodopa thus allowing more of the dose to cross the blood brain barrier. Hope this helps clear some of the unknowns. Blessings
  22. adams234

    Rasagiline and other drugs

    Sorry for late reply Superdecooper, Been a crazy few weeks I still take it because I feel I am benefitting from it. My doctor and I believe that is helping so we will stick with it till we are proven otherwise. Since I was able to get my copay for Azilect to $10 for a 3 month supply I felt no need to experiment with stopping it. One of those deals if the regiment is working don't mess with it. If my MDS suggested stopping (backed by a good reason) then I would give it a try. My MDS had me start with Azilect since I was part of the Isradipine study. Her belief was that the 2 drugs combined might slow my progression. I have been in the study for just over 2.5 years and on both drugs the whole time. According to my updrs scores my progression has been slower than what they would expect for someone my age. When I first started Azilect it was the only anti-Parkinson's med I was taking. I first notice that my mood was greatly improved. It was like someone lifted the cloud of dread that had been following me around. Then I noticed that some of my stiffness was decreased. This made it a lot easier to walk. I can remember walk over 5 miles the day I felt it working. That is why I am still taking it. Hope I didn't ramble on to long Blessings Adam
  23. adams234

    Duopa Pump Users-

    Noah, There are 2 enzymes in your blood that break down levodopa before it gets past the blood brain barrier. Carbidopa that is included with sinement and rytary takes care of the more agrresive enzyme. Comtan will neutralizes the second one thus allowing more of your regular dose of levodopa to make it to the brain. Hope this helps. My MDS has suggested this to me at my last appointment. We are keeping it as my next med adjustment should I need better coverage of symptoms. So far the last adjustment has been enough. Blessings
  24. adams234

    This & that!

    Some days I fight, Some days I cry, Some days I get out bed and wonder why, But every day I walk with my head held high. Because I know, I will get by. Blessing Everyone.
  25. adams234

    Rasagiline and other drugs

    Good luck Superdecooper. I have already hit my max deductible thanks to Azilect. Now my insurance pays for things. Makes me feel better that they get to spend money on me.