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adams234

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adams234 last won the day on March 21

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About adams234

  • Rank
    Advanced Member
  • Birthday 02/20/1979

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  • Gender
    Male
  • Location
    Rochester, NY
  • Interests
    Home Repair, Camping, Outdoors.
  1. As I was going through the diagnosing process and DatScan Process, my MDS told me that everyone who is newly diagnosed will get the label of parkinsonism till they have 5 years of history in their medical chart. Then it will switch if your disease progression stays on track with Parkinson's or one of the other not so fun disorders lead you down a different path. like MSA, PSP, ect. At my last appointment I asked about symptoms and my progression. She said that the symptoms I have and my progression so far lead her to say I have Parkinson's with %99 certainty. Since I have only been diagnosed for 2.5 year it will be 2.5 more years till I see parkinsonism disappear off my charts. She stated this was done to make sure the are keeping any eye out for anything different then the usual, she also stated that a dx of parkinsonism does not change treatment or the care I receive. Even with Parkinsonism as my current primary dx I was still accepted into the Steady PD III trial testing Isradipine for slowing the progression of the PD.
  2. Thanks for the info John. One of the things my pharmacist explained about generics made some sense. The C/L can be different in how fast the inert ingredients break down in the gut releasing the active ingredients. He explained that this may cause the difference in the speed each drug kicks in. So far the difference in all the brands I have had are very minor and I may be trying to blame the brand for my evening twitches before bed. Blessings Adam
  3. Since I have started taking C/L I think I have had every manufacture that has made it. Currently Wegmans Pharmacy here in NY has put me back to TEVA C/L. Since I have been back on this brand I have noticed that it kicks in a little slower and I get a slightly more dystonia in my hands. I also get more twitches and restless leg syndrome before my ER kicks in at night. Thankfully my last scrip that was refilled, Wegmans has switched back to SunPharma brand C/L. I have found that for me this one kicks in relatively fast and I have less issue with leg twitches and dystonia. I don't remember having issues when I was on Mylan's version either. Been awhile since I have used Mylan.
  4. Tamara, I try and keep a low processed foods diet. In the states we have an over abundant amount of highly processed foods. This often leaves the item with little to no nutrition. I have lots of salad, and chicken low meat fats, try to keep semi paleo in nature. I try to avoid wheat gluten as much as possible. I have found this helps with my energy and my joints hurt less. There have been studies that suggest a mediterranean diet is helpful for those with PD. Good luck
  5. Tamara, Welcome to the forum I have been in the Isradipine study trial for 1.5 years now. I started the trail when I was not taking any drugs after 6 months on the study drug I started to take Carbidopa/Levodopa also known as sinement. I started with 25/100 mg 3 times a day. We bumped it to 1.5 pills 3 times a day a few months later to get better coverage. The latest research show that starting sinement or C/L early on or later does not make much of a difference. They believe that disease progression gets to a certain point and then the side effect known as dyskinesia starts. They looked at a number of patients. Those who started c/l at onset and those who waited a few years. Those who started at the beginning of onset had the same occurrence as those who started later. The drug Isradipine will not do any thing to control the symptoms of PD. The hope and thought is it will slow down the progression. I can tell you that I have been in the study for 1.5 years and my progression has been very slow. I will know more over the next 1.5 years if it is doing any thing. Hope this helps.
  6. Hey, Johnnys What brand you using for C/L? I was taking sun pharma and found that to be very quick to act and I had less issues with restless leg and twitching. Now my pharmacy has switched back to teva and the twitching and restless leg is back. Thanks
  7. If you set up an account https://www.ssa.gov/myaccount/ you can use the tools to get an estimate on what you disability would be if you filed and were approved. I keep an eye on mine, since diagnosis mine has gone up over the last few years because I have a stable job with pay raises. My goal is to keep working till I can't or my MDS says I should think about stopping. There is also a tool to see if you might qualify for SSDI. Good luck. I manage a busy nursing home kitchen that has mini kitchens on 5 different floors. I think once you optimize you medication and get PT going you might feel better than you think. I was shocked at how much better I felt once I started meds and got them dialed in. Was like stepping back 5 to 10 years. I still deal with fatigue in the after noon but this is an issue almost all parkies deal with. Good luck. Blessings Adam
  8. Come to Rochester New York. Tonight is 18F degrees with a wind chill of 0. Yesterday was 65. Got love this time of year up north
  9. I agree with swamper, took me a two months to get up to 1.5 pills of 25/100 C/L 3 times a day. Go slow, I like you wanted it all at once, but you body and brain need to adjust to medication. Good luck
  10. Good luck. Sounds like second opinion is a good idea. Hope the new MDS steers you in the right direction.
  11. I got lucky, turns out the job I started 7months before my Diagnosis is the perfect job to have with PD. For me at least. They have been very accommodating with schedule and we have discussed what changes we will need to make as things progress. Funny how things work out sometimes.
  12. Correct me if I am wrong, doesn't most cures come from understanding how and why a disease happens? I feel you pain Miracleseeker. I believe that a cure in my lifetime most likely won't happen and if it does it will be to late to do me any good. The damage has been done. Need a cure and a restorative procedure.
  13. When someone ask specifically about my PD and how it is going with it, I am generally not bothered. I tell them my Pills are working good and some days are better than others. Depending on who they are in my life I will tell them some of the things that I have trouble with. As far and being asked how I am doing my general answer is good. For the most part I am doing good. My biggest thing that I wish those who are close to me would do, (example, spouse, close personal friends, family) is when they see me with a small tremor and I reach to do something, just let me do it. I am tired of explaining it is a resting tremor at this point and I can pick up this glass and I can carry this or that. When I need help I will ask. I know they care and want to help, but the jumping in and taking over makes me feel like a child all over again. I love my care giver/ husband dearly. We have this talk very often. He is better at under standing that a tremor is the least problematic symptom I have. He has learned to just look at me in the eyes and say "Good?" I will respond with a yes or could you assist. Now it is to get the family and close friends on board.
  14. I have been taking Carbidopa/Levodopa aka sinement for 2 years. Never had a sleep attack. Never had a dyskinesia. So far my symptoms are well controlled and I do a lot of walking standing and lifting with my job. I drive 20 to 30 miles a day. Side effect are warning of what could happen. Not what is going to happen. I am 38 years old and I will deal with problems as they arrive latter on. Right now it is quality of life, so I can keep working and keep up with the demands of being my age and a home owner. I agree, with everyone. Slow down take a deep breath, C/L is the best tolerated drug so far and is still the gold standard in treatment. You just have to be vigilant in how much and when you are taking it. Talk to you MDS before you go and put in you notice for SSDI. Good luck and Keep asking questions. Blessings Adam
  15. I agree with Patriot %100, I never get the Flu shot. It has served me well, I work in a nursing home and it seems the staff that gets the flu shot is out more often and longer than those of us that don't.