Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

5 Neutral

About kai

  • Rank

Contact Methods

  • Website URL

Profile Information

  • Gender
  • Location

Recent Profile Visitors

618 profile views
  1. Hi Mark, I'm currently taking C/L 25/100, 4 times a day. The hour before I take my next dose the med wears off. Do you think the Sinemet ER is more effective? I've tried Rytary but although it's supposed to space out the medicine better over time, it's been spotty for me. Thank you.
  2. kai


    Hi Gardener, I'm also seven years from diagnosis and I have a resting tremor in my right hand most of the time. It will stop at the peak of my C/L dose but more there than not. Stress and being tired absolutely increases my tremor. Best to you.
  3. Guest RobP, One way that might be helpful is to find your local PD Association. In Hawaii our local assn website has information on the various support groups on the island. Maybe they could send out an email to their database saying that you're putting together a new group. They may also have ideas on how to put one together. One other thought is to contact someone who has a YOPD support group and see if they have any insight. Here is the link to our local assn and you'll see the contact for the YOPD group. http://www.parkinsonshawaii.org/oahu Good luck and your community is lucky to have someone like you willing to make the extra effort!
  4. kai


    @Kaydee, I don't know anything about cannabis but I did just read in "Every Victory Counts" book from the Davis Phinney Foundation, a person that takes edibles in doses given to children with epilepsy. Although that might not be the right dose for someone with PD, at least that has been studied quite a bit and hopefully if it's given to children, the dosing might be a jumping off point to look into. By the way, the book is free to either download or they will mail a free copy to you and it is full of good information and inspiration. https://www.davisphinneyfoundation.org/blog/the-every-victory-counts-manual-is-back/ I've had three teenagers before PD and they can lovingly drive you crazy anyway Please keep us updated.
  5. kai

    Notes From the Synuclein Conference

    Thanks Benyamin for the link. You're website is a good one!
  6. kai

    Getting Out

    Hi jm3115, You are not alone. I recently posted a similar question on the board and received some excellent responses. Here are a few things I'm just starting to implement. 1. See a therapist - I've only gone twice but really being able to open up about what is contributing to my anxiety feels like a valve release. 2. Meditation - Even 5 minutes a day 3. Making a list of different situations that create anxiety and write out possible responses for each situation. Such as running into someone I know in public, when a stranger notices or says something about my symptoms, etc. I've found having a few things pre-planned things to say for each scenario helps the "surprise" factor that exacerbates the situation, can bring a little humor and a positive way out of an embarrassing situation, and sometimes can help to educate someone about PD. If anyone has any good "elevator speeches" that have been helpful, I'd love to have some more tools to help with anxiety in public. Thank you.
  7. kai


    Thanks Kaydee. That's very interesting as I take Rytary and have never heard of that before. I hope others in the community can comment if they have any similar experiences.
  8. kai


    Thank you Lad, I have downloaded the book.
  9. kai


    Thanks papa57 and Lad for your input. This may be a dumb question but does anyone know whether it's physiological, meaning are we getting anxiety because of our lack of dopamine? Or is it psychological and our minds are creating the anxiety, which then makes our tremors worse?
  10. kai


    Thanks Sue for your input. It's so interesting that several people mentioned that positive stressors can also create anxiety.
  11. kai

    Struggling with family relationships

    Hi Gardener, I was also diagnosed 7 years ago and struggle with fatigue. Unfortunately many times family members only see the visible symptoms like tremor and don't understand the cognitive and internal challenges we have. Although its good to push ourselves because that's sometimes the only way we know how far we can go, it has to be balanced with learning to listen to ourselves and and our bodies and take a slower pace when we need to. I understand the want to "power through" and not letting on to others that you can't do it, but it's a strategy that created a lot of stress for me. I found it was not so much my family's expectation of me, but more so my attempt to keep hanging on to what I used to be. If your relationship with your family is such that you think having a more formal discussion about it is the way to go, then tell them about how fatigue is a major symptom and that sometimes you won't be up for doing things. In my case I did it more casually when specific things to do came up, I'd just say "that sounds great but I'm feeling a wonky today and will pass but thanks for asking". After saying that a few times, they got it. Regardless of which way you go, have some self compassion for yourself and find the rhythm that's right for you now and don't feel like you have to keep up with others. Best to you. Kai
  12. kai


    Thanks so much Sue!
  13. kai


    Thank you Kaydee. It's so wonderful the thoughtful experiences and support that everyone in this forum provide.
  14. kai


    Thank you Dianne for your helpful response. I will do both!
  15. kai


    I'm having some anxiety issues. It started out as very mild but dramatically increasing recently. It's a vicious cycle of worrying about my symptoms before I do some socially or doing things in public, which then in turn makes my symptoms worse, and on it goes. In the last month or so I feel like I'm having an anxiety attack before I go out. It's also now including just getting excited about things both positive or negative seems to trigger an increase in tremor and anxiety. Is this something that therapy can help with and if so, any suggestions on a certain type like Cognitive Behavioral Therapy. Or would an increase in my C/L dose help. Any guidance you have, if you've experienced something similar would be greatly appreciated.