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cereus

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cereus last won the day on January 17

cereus had the most liked content!

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About cereus

  • Rank
    Advanced Member
  • Birthday 06/10/1957

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  • Gender
    Female
  • Location
    Arizona, USA
  • Interests
    gardening, visual arts, sewing & textile arts

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  1. I also cannot sleep if I take carb/levo in the evening. In our women’s support group, this seems to be a fairly common reaction. I am trying to get Azilect, but my insurance won’t pay for it. Can you give me more information about how you get it from India? Thanks. Diana
  2. These both look like wonderful events @Superdecooper!
  3. I am so sorry, Troy. It is not your fault. It sounds like you and your mother did everything you could to try to help and to get help. It is a tragedy and I'm sure was very traumatic for your family, on top of the grief you must feel over the loss of your father. The thing is, we are all doing the best we can, making the best decisions we can with the information we have, taking our chances. That's all we can do.
  4. @Kokomo, it's a little known fact that this club has some pretty incredible members. We welcome you here. It's great that you have done a quick assessment and feel you are in a pretty good position for starting this journey. We are here, and there are lots of terrific resources available online. I'm sure @Superdecooper has given you advice about exercise, building your support team, etc. Please reach out anytime.
  5. Good reminders, John, about keeping things in perspective! I don't even have a flip phone ☺️ . A simple land line suffices for me. I don't drive very far and I'll be home shortly. Somehow we managed in the olden days(!) without being immediately available 24/7. Also, we had our conversations in private instead of in the company of strangers in stores, etc.
  6. cereus

    Foot shuffle

    Thanks so much for this, Lori! I just watched it and this seems really exciting!
  7. Happy Birthday, John! I like your idea of sharing support, which is what we do on this forum and another one I belong to (myparkinsonsteam.com). Doctors can only do or know so much, while we know ourselves and our bodies well. I agree that we have a responsibility to ourselves to be proactive in our own care (as much as we are able) and to help one another. This is the link I found that worked to get to your blog: https://parkinsonfellowshipcom.wordpress.com Hope you have a wonderful day with your son.
  8. @Life Is Good I echo the other responses here. I was diagnosed about the same time as @Superdecooper, but I started meds in April, 2018. I did a medication trial as part of the diagnostic procedure. My quality of life improved immediately. I have both motor and non-motor symptoms and both were addressed by the medication. My walking speed was down to about .8 mph and I was experiencing pronounced apathy. I am not a fast walker now, but I am up to 2 mph :-). My apathy disappeared. My personal experience was that I had been struggling to cope much more than I'd realized, and with symptom relief I understood just how much of a strain it had been. I am not symptom free now, but I am in good enough shape for things like the major move I am undertaking at the moment, for example--with the help of many kind-hearted friends. (I am moving to a community with better support for people with PD.) Tonight I made it through about 4.25 hours of sleep.
  9. @John Hoefen I love this post of yours! I am newly diagnosed, but I use some of the strategies you include here. A few years ago, when I had a spinal fracture but could not take time off work, I learned two of the lessons you refer to: 1) distraction is the best medicine (or, if not the best, at least an effective part of an overall strategy), and 2) my conscious mind has some say in the emotional content (fear, etc.) that accompanies pain. You have applied a similar strategy to your anxiety issues. I like the technique you describe for fine-tuning medication dosages. I will bear that in mind. Thanks for the post.
  10. Best of luck with that training @Superdecooper!
  11. Best of luck. Hope the neurologist can help relieve these symptoms.
  12. @rudra If you haven't already, you might want to post your question in the Ask a Doctor and Ask a Pharmacist forums to get their opinions & advice.
  13. Thanks for your reply, Mark. I have been following the schedule you suggest (with a slight variation) and started the Week 2 schedule on Friday. I did not experience the very loud tinnitus last night, but I have tinnitus at a lower volume now. I hope it goes away as my body adjusts, but if it doesn't and it stays at this low volume, I can live with it.
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