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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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    Arizona, USA
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    gardening, visual arts, sewing & textile arts

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  1. cereus

    New Caretaker/Drug Interactions

    Calliope, I was shocked to read in your message about the DMV policy in California with respect to Parkinson's Disease. I think Davis Phinney or some other advocacy group ought to challenge that policy as a civil rights violation. But I know that doesn't help your situation. You have had a lot to deal with in a very short time. You may already have this information, but the APDA has two information and referral numbers for California, which you can find on this page: https://www.apdaparkinson.org/community/california/ Maybe you can get some help from them. Here is the information I copied from that page: Information and Referral Center at Stanford University 300 Pasteur Drive, Room H-3144 Stanford, CA 94305 650-724-6090 Robin Riddle, Coordinator Helen Bronte-Stewart, MD, Medical Director rriddle@stanford.edu Information & Referral Center at University of California San Francisco University of California San Francisco Movement Disorder and Neuromodulation Center 1635 Divisadero Street, Suite 520 San Francisco, CA 94115 Samuel Yee, MSW, Coordinator 415-353-4628 Jill L. Ostrem, M.D. Medical Director Ian Bledsoe, M.D. Medical Director
  2. cereus

    New Caretaker/Drug Interactions

    @Calliope, your husband is lucky to have you as his advocate. You have demonstrated that you are not helpless, and that you have the good sense to double-check when in doubt. Dianne has given you great advice about the Aware in Care kit. You may have already researched these other sites, but in case you haven't, I'd recommend The Davis Phinney Foundation (https://www.davisphinneyfoundation.org). You may especially want to order or download their free manual called Every Victory Counts (https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/). The Michael J. Fox Foundation (https://www.michaeljfox.org). Both of those sites, in addition to this one, have a wealth of information. I also enjoy the social networking site for people with PD and their care partners called My Parkinson's Team (https://www.myparkinsonsteam.com). Hope this helps.
  3. cereus

    Sports and Dopamine

    Great that you figured out a way to make this work @Superdecooper. Thanks for sharing your experience with us.
  4. cereus

    I have it!

    Happy Birthday, @KansasGuy! Heck of a birthday present. I was also diagnosed this year, within a couple of weeks of my 60th birthday. I echo the other comments regarding exercise. I am on meds because my primary motor symptoms are gait related and I cannot exercise without the meds. You are wise to have found your way here, to this forum. A supportive community can make a world of difference as questions arise. The Ask a Doctor and Ask a Pharmacist forums are also great sources of information. Welcome to the club. You'll find a lot of incredible people have been granted membership!
  5. cereus


    I entirely agree @LukieSue. My issues with anxiety have vastly improved since lowering the c/l dosage and raising the ropinirole. Ropinirole has helped even out my moods overall. I guess I am lucky in that. I will be interested in hearing about how others who have commented here are doing with their strategies and experiments.
  6. cereus


    Thanks so much, Mark.
  7. cereus


    I am eavesdropping on this question and I wonder . . . this is the first time I have ever heard of restore-gold . . . is this meant to be taken in addition to other meds such as carbidopa/levodopa or instead of them?
  8. cereus

    Mired in Muck

    @papa57 I am in a similar situation to yours in that I am about your age and I live in a fairly remote area. I live alone, so for me, living someplace with good PD support is a high priority. And, although I do enjoy lots of time alone, I worry that when my mobility becomes more limited, I will not have enough social interaction if I stay here. (Already I could not drive the 3 hours you referenced in order to get anywhere.) So, I am in the process of trying to sell my house and move to an area with an active PD support group, exercise classes, opportunities for social interaction, and . . . grocery stores! Although PD has caused me to re-evaluate my situation, in some ways this has been a good thing. I look at this potential move as a move toward rather than a move away from. This is easier when I do not have to cope with the anxiety, apathy, &/or depression that PD can cause. For me, adjusting my PD meds makes a big difference with these moods. In my case, the right amount of ropinirole makes the difference between being able to cope and believe in future possibilities and despair/inability to cope. Seeing a therapist sounds like a sensible next step. And I agree with @Superdecooper about the support you can get online--not only in this venue but in others such as My Parkinson's Team (myparkinsonsteam.com). Hang in there.
  9. cereus

    Welcome to the club

    @Superdecooper There is going to be a webinar on managing off times a week from Thursday. Here's the link in case you want to register: https://www.michaeljfox.org/page.html?hot-topics-webinar-series&navid=webinar-series
  10. cereus

    Welcome to the club

    At those times I am reminded of how grateful I am for the medications(!)
  11. cereus

    My mum's just been diagnosed

    @KBBrown That's exactly how I felt when I was diagnosed (this year), too. A lot of things (going back a long time) made more sense. I'm sure you have already figured out that there's a lot of help and support here in these forums. The Ask the Doctor and Ask the Pharmacist forums are great places to ask specific questions about symptoms, medications, etc. I also participate in an online support group called My Parkinson's Team. People with Parkinson's and those associated with them are welcome to join. You can build a team, share tips & concerns, and generally make friends there, too.
  12. cereus

    curling of toes

    Thanks for asking these questions @GURUTEGH & @Superdecooper, and thanks for your responses @Dr. Okun & @SherryKnuth. I also have dystonia on my "good" side and was wondering about this. Dr. Okun, your additional comment about finding symptoms on both sides of the body was also interesting.
  13. cereus


    @Kaydee Yeah, no sooner did I finish writing those posts than the old familiar feeling started creeping in . . . So far it is manageable this evening. I can see your dilemma in terms of your kids. Heck of a choice. I wonder if different strains of cannabis might affect people differently, too. Please share with us what you learn from the people at the hotline. And in the meantime, hang in there.
  14. cereus


    Or maybe it's just one of the many mysteries of PD.
  15. cereus


    @Kaydee and @papa57 Based on what the two of you are saying, my own experience, and the experience of the woman who wrote the article Kaydee linked to, it seems the anxiety can result from either too much or too little levodopa. I think I was getting too much, but it sounds like the two of you experience anxiety as a result of wearing off.