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Everything posted by kai

  1. kai

    Newly diagnosed - a few questions about sinemet

    Rosencrantz, another good book with lots of information is the "Every Victory Counts" book by the Davis Phinney Foundation. You can download it free from this link on their website and not sure if they are still doing it, but if you call them, they will mail you a copy at no cost also. Kai - www.asimpleislandlife.com
  2. kai

    what to do during winter

    Hi Noah, What I've found helpful for all year around is to put together a list of all the things you can do and then each day or week, plan out a few activities each day to keep you busy. Here is a sample list and I'm sure you'll have things that match you. All of exercise classes I can do online at home. yoga, meditate, kickboxing, journaling, reading, house maintenance & cleaning (I also have a list of all the things I do to clean the house and do 1 each day), genealogy research, listen to music, sing a few songs (to keep my vocal chords in use & makes me feel good), volunteer (you may find someone who also volunteers at the same place & can give you a ride. Look at www.volunteermatch.org), crosswords or games (you can also find people online to play card games or chess), learn a new language (duolingo is free), practice cooking, start a blog, do puzzles. I too get antsy when I can't garden or be outside. Let me know if you have any suggestions that I can add to my list!
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. kai

    Notes From the Synuclein Conference

    Thanks Benyamin for the link. You're website is a good one!
  9. 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.
  10. 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.
  11. kai


    Thank you Lad, I have downloaded the book.
  12. 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?
  13. kai


    Thanks Sue for your input. It's so interesting that several people mentioned that positive stressors can also create anxiety.
  14. 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
  15. kai


    Thanks so much Sue!
  16. kai


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


    Thank you Dianne for your helpful response. I will do both!
  18. Hi Mark, I'm currently taking Rytary 23mg/95mg 3x daily. My tremors and stiffness are primarily on my right side but they are increasing and the current dosing doesn't seem to be working well. I'm not sure if I should add one more pill per day (4x day), which would shorten the time frame between pills, or increase the dose to to the 36/145mg but stay with 3x a day. Or any other suggestions you may have would be appreciated. Thank you.
  19. kai

    Increasing Rytary dose

    Great. That makes perfect sense and will give that a try. Thank you.
  20. kai

    Newly Diagnosed

    loveya1971, 6 years ago I was the same age as you are when I was diagnosed and I understand your challenges and fears as I'm sure do all here on the forum. So know you are not alone. Reading and talking about it with others who understand helps take away some of the fear so keep reaching out. With regards to your medication, you'll find that you will become the expert on you and what works. Keep a journal of what you're taking and the positives and negatives, and take that to your doctor to discuss. If a medication doesn't work discuss other alternatives. In the beginning I felt frustrated with my doctor because I wanted things to move quicker and wanted everyone to have the sense of urgency that I felt. However overtime you realize that there is a pacing to figure out whats right for you. At the end of the day though, if you feel as though your doctor is not listening to you and doesn't walk to work as a team to create the best care for your situation, then you may want to find another.
  21. Hi Mark, I am currently taking carb/levo ER 25-100, 4 times per day at 7a, 11:30a, 3:30p, 7:30p. It helps, however the last hour before I take the next dose, I have a wearing off period. I've heard that rytary would help with the off time or you've mentioned a combination of regular C/L combined with C/L ER. Which do you think would be a good place to start and could you explain the regular and ER combination method as I didn't quite understand the timing of that. Thanks for all your tireless help. Any help suggestions from others who have the same situation would be appreciated.
  22. pinkdaisy, I too was 45 which was 5 years ago when I was diagnosed and remember feeling the same scared thoughts as you are feeling and to be honest still feel from time to time. It does take time to process your thoughts and feelings and that's ok. The best advice I can share is to be open about all of your feelings to someone. Whether its a family member, friend, therapist, or even as you are doing so wonderfully here on this forum, being able to talk about them really helps me keep in a positive place. We are all in this together!