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cereus last won the day on January 17

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. @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.
  2. 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.
  3. cereus

    Foot shuffle

    Thanks so much for this, Lori! I just watched it and this seems really exciting!
  4. 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.
  5. @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.
  6. @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.
  7. Best of luck with that training @Superdecooper!
  8. Best of luck. Hope the neurologist can help relieve these symptoms.
  9. @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.
  10. 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.
  11. Hi Mark, I am in the process of titrating an increase in my dosage of ropinirole. I had been taking c/l 25/100 3x day plus ropinirole .75 3x day. A week ago I increased my a.m. dose of ropinirole to 1 mg. Although in the past I have experienced headaches when I first increased a dose, I had no side effects from the increase other than more intense sleepiness (a side effect I always experience). Last night I increased the p.m. dose to 1 mg. I slept only a few hours and woke up with loud tinnitus. I have two questions about this: 1) Could the tinnitus be related to the increased dosage of ropinirole? 2) If it is, is it a side effect that will likely lessen as my body adjusts? (Previously, my headaches from increased dosages only lasted a day or two.) Thanks very much for any help or advice you can offer. Diana
  12. 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
  13. @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.
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