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Showing most liked content on 06/12/2017 in all areas

  1. 4 likes
    Some one explained exercise like this to me and it help me keep up the motivation. (I have almost the same issues you do during and after exercise). "Doing an exercise routine that gets the heart rate up for 1/2 hour or more is like making a deposit in your 401K. It is not immediately beneficial but will help you in the future." This helped me to understand that I may not see a benefit that day, but I will see it in the future. I can say that after 2 years of maintaining an active life with exercise, I am still on the same dose we first found worked for me and my last MDS visit I had the same scores I did when I first saw them. Good luck and hang in there. It does get better. Attitude is everything with this disease. Every day try and find something to celebrate (be happy abut). It can be as simple as waking up in the morning and putting you slippers on with out meds. This way of celebrating the little thing helps me stay in a positive mind set each day. Blessings Adam
  2. 2 likes
    https://tmrwedition.com/2017/04/30/a-journey-round-my-brain/
  3. 2 likes
    Please ignore and delete any PM's from the user Cynthiakonate. They were completely banned (IP address, username and email address). Thank you,
  4. 2 likes
    Hi all... I went through the clinical trial for the pump (it was a year long trial). Three years later I still have it and I love it!!! It is so much more effective than the oral medications and, in many ways, has given me my life back. It does require some care with the peg-J and all, but in my opinion is well worth the extra effort. I had alot of trouble with the tube kinking and knotting internally, but I finally figured that out...after 5 endoscopies to replace the tube, I started taping the tube to my stomach during the night so it cannot twist. That solved the problem! I get my medication and supplies from Accredo--a specialty pharmacy (during the trial, it all came from Pharmacy Solutions, but changed when insurance took over). It is covered by my insurance and I have another provider that pays my insurance deductible and co-pays, so I basically pay nothing for the pump or the medication! I am not sure why more people are not looking into this option...it is more invasive than the oral meds, but it is so much better. I became involved as a step prior to considering DBS more seriously. It was a great option. Good luck to each of you...I hope it works well for you! Peace, Mihai (Michael)
  5. 1 like
    DaTscan is apparently not that reliable. The last MRI of my brain showed nothing but my neurologist said I would have to have one done in Lausanne to have a more molecular view of a start down the route of PD. All I care about, as does he, that the Sinemet works. Essential tremor would not react to dopamine. "The short answer is that the DaT test is over-used in clinical practice, and is only FDA approved to distinguish potential Parkinson’s disease from essential tremor. In fact, the test only tells the clinician if there is an abnormality in the dopamine transporter, and does not actually diagnose Parkinson’s disease (could be parkinsonism). PET is also overused, though it can be a more powerful diagnostic tool when in the right expert hands. If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and DaT scans would not add any new information, and may prove unnecessary. In cases where the expert is not sure of the diagnosis – is it essential tremor or Parkinson’s, for example-- or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a PETscan or DaTscan. It is important to keep in mind that PET and DaT scans should be performed only by experienced neurologists who have executed a large volume of Parkinson’s disease scans, because experience is important in accurately reading the imaging results. One important update is that DAT scans can and have been misread since the FDA approval in 2011. The reason DAT scans can be misread is because the interpretation is performed entirely by the eye (there are no hard numbers to make the diagnosis). This type of “qualitative” interpretation is subject to error. We always recommend that the interpretation be performed in the context of the clinical symptoms of the patient, and when in doubt to get a second opinion from a Parkinson’s expert."
  6. 1 like
    Mark, I was diagnosed 2 years ago at the age of 44. I started right away on meds as my tremors were pretty bad and causing me issues at work etc. While I somewhat understand the "fear" of meds I also decided I wanted the best quality of life I can have immediately and will deal with whatever comes. I have had to increase meds somewhat over the last 2 years but not dramatically although I am finding a hard time getting a good routine down that will have the meds lasting all day. Anyway, do your research and learn all you can and then make the best decision you can make for yourself. Hope that was somewhat helpful!