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cereus

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cereus last won the day on May 26

cereus had the most liked content!

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About cereus

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    Advanced Member
  • Birthday 06/10/1957

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

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  1. cereus

    Notes From the Synuclein Conference

    Thanks so much, Benyamin, for sharing the link to your notes. I appreciated your thoughtful article. Do you happen to know whether a young researcher from Arizona named Jeremiah Pate attended the conference?
  2. cereus

    Who's on your healthcare team?

    I hope your friend gets the help he needs, John. It must be distressing to witness situations like this and feel there is little you can do to help. He is lucky to have such a caring friend in you. This sounds like a big undertaking, but I do think it is worthwhile to give feedback to the organizations that already exist about what our needs are and where there are unmet needs. The Davis Phinney Foundation is focused on living well with PD; maybe they would be responsive to a request from you. As a single person who lives alone, I can only hope that when I need more care there will be an advocate to help me as you are trying to help your friend. I think an organization to provide advocacy--either a separate organization or one under the umbrella of an existing organization--could be a great help. Even for those who have carers, it can be daunting trying to navigate the medical system (in any country) in addition to all the other responsibilities of caregiving. So, I really do like the idea of having an organization of patient advocates who could help with these kinds of issues. Thank you for your post, John. Diana
  3. I appreciate your kindness and candor, JB. 

    Diana

  4. cereus

    PD is not the end

    Sounds so good, John! Wish I lived near enough to take you up on the offer!
  5. I don't know whether anyone has posted about this yet or not, but tomorrow's Victory Summit will be broadcast live, so you can attend for free via computer. Here's the description from the website: The Victory Summit event is a day of information and inspiration, featuring dynamic presentations from leading movement disorder neurologists and therapists from across the country. You will come away from this event, whether online or in person, feeling motivated and armed with tools to help you be more involved in your own treatment and to improve your quality of life. To register, go here: https://www.davisphinneyfoundation.org/live-broadcast-registration
  6. cereus

    PD is not the end

    As with so many others, I've been going through a rough patch. It helps to know there are others here who understand.
  7. cereus

    Welcome to the club

    Sorry you're having a bad day @Superdecooper. I get what you're talking about here.
  8. cereus

    PD is not the end

    Well said, John.
  9. cereus

    Good morning!!

    I apologize to everyone for accidentally crashing the Young Onset Forum!
  10. cereus

    Good morning!!

    Here's hoping that night comes soon and that you have sweet dreams
  11. cereus

    Good morning!!

    Thanks for the update, jb. It's good to hear that you have experienced some improvement as a result of your new bionic device. I am looking forward to the recording of your first piano recital ;-). I, myself, am working on the ukelele--putting my tremor to good use! Diana
  12. cereus

    Good morning!!

    Best of luck with that last programming trip, JB. Stay as cool as (we all know) you are ! Diana
  13. cereus

    Good morning!!

    You are awesome LAD!!! Go for it!!!
  14. cereus

    Good morning!!

    Hey, John B, sign me up for some of that Ontario Air! Although I am new to the forum, I was thinking about you and the DBS this morning and then, lo and behold, here is your post. It sounds like a challenging experience. Thank goodness you have an excellent medical team and strong support to help you get through it. Best of luck with your next appointment. Take care. Diana
  15. cereus

    Good morning!!

    Enjoying the cool (77/25) wee hours before the heat (103/39.4) sets in here on an Arizona summer morning. The bird chorus is just warming up. We are due to have thunderstorms today. It is our monsoon season.
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