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LukieSue last won the day on August 10

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About LukieSue

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  • Birthday 03/11/1955

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    Eastern Washington state

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  1. LukieSue


    Thank you for bringing up c/l and ropinirole. I wonder how they are affecting my anxiety. I'll pay more attention to them. The ropinirole is ER so but the c/l is not. Does anyone know how long it takes the ropinirole ER to take effect and how long it lasts. (I realize we are all different but if anyone else has any experience or knowledge to share...) Sue
  2. LukieSue


    After reading the recent posts, here's some more input from my journey with anxiety... I, too, think that anxiety is my worst PD symptom...in part because it seems to be the least "controllable." Not that anything in life, including PD is controllable, but there are effective treatments for a lot of it. I take an anti-depressant (paroxetine - 40 mg at bedtime) for the anxiety. The next and top dosage is 50 mg but since I'm not having panic attacks, my MDS has stopped the increase there. I'm thinking it's time to look at different meds. My counselor questioned paroxetine a long time ago. Other treatments for anxiety include: CBDs, which I think are helping, learning mindfulness techniques (breathing, living in the present, learning to relax, meditating (not the eastern spirituality kind so I feel it's compatible with my relationship with Jesus), and counseling which has cleaned up my self image so I'm kinder to myself. I am trying to live at a slower pace which is hard for a hare. In addition, 500 mg of liquid turmeric twice a day encourages life in the fast lane rather than learning the lessons of the sloth. I'm glad this topic is being discussed. We need each others' support. Also, talking about mental health issues will de-stigmatize them.
  3. LukieSue


    I just reread Kaydee's post on anxiety. I, too, have found sporting events, fast-paced/action movies, lively music and other "positive" stessors cause anxiety as well as "negative" stressors. So, our house and cars have become much quieter. We have explored background/soothing/relaxing music and have been asking "Google" (Alexa, etc.) for "background piano music." Lovely. I had DBS 2 1/2 years ago with GPI (instead of STN) placement. I think we are just about to "perfect" on my meds and stimulator setting. It takes longer to program the GPI DBS, but mine has taken longer than usual. I think I've suffered the most with the anxiety since DBS. However, I don't think DBS was the cause. I had med issues before DBS that were not understood until after the procedure. I don't know if the GPI placement was part of the issue. I've been told that the GPI placement should provide more options in the future, especially as it looks like I'll do pretty well and be around for a long time... Just thought I'd add a little more on anxiety...it's a terrible thing. Sue
  4. LukieSue


    Oh yeah...sounds way too familiar. I think I've had PD-related anxiety for 30 years.(I was diagnosed 10 1/2 years ago at age 52 after upper back rigidity and tremor came to stay.) I feel like the anxiety is the worst part of PD. I have been seeing a counselor for a year and a half. He uses Cognitive Behavioral Therapy which I think includes finding unrealistic and false beliefs about myself and my surroundings and replacing them with true and realistic beliefs and self talk. For example: "the streets are icy so I"ll stay home..."but i know the streets are plowed and sanded, (and have been for 2 days)" and "I've driven in winter many and done just fine,"..."but it might snow while i'm out"..."and you'll slow down and be cautious" and on and on...often with anxiety building. And I too have discovered that it can be positive and negative thoughts and feelings that increase the anxiety. Too much stress is too much stress. So, cognitive behavioral therapy, bringing myself into the present moment, diaphragmatic breathing, body scans, choosing to slow down (in addition to the forced slow down that PD brings) and imagining myself in God's arms are all in my toolbox of chill techniques. I've recently discovered that I only thought I knew how to do diaphragmatic breathing . I'm going back to Tai Chi for a refresher on that.The shallow breathing makes it easier for the anxious thoughts and feelings to take over. Mindfulness is a thing these days and has a lot of helpful practices...breathing the way we were created to breathe is essential...as well as living in the present moment. I am looking at some other therapies and will talk to my primary care provider in my annual check up later this month. Sue
  5. LukieSue

    Anybody Find Tai Chi To Be Helpful?

    Yes, I have enjoyed Tai Chi. Since we're all PWP, it's very basic and balance focused. It's good to be reminded that slow can be good.It is a slow practice which is suited to our speed. I can still move fast at times, but I think walking and turning fast could be setting me up for a trip and/or fall. Thus, I'm trying to be more careful when I'm able to move fast.
  6. I had GPI DBS in March, 2016. I titrated off of ropinerole (Requip) in late summer of this year. I'm glad I did but thought I'd mention that I was reminded why there is a slow titration process for medications. I felt like I had some withdrawal symptoms...hard offs, tough times coming back on...it was distressing at times, glad it's over, PD always provides lessons in patience.
  7. LukieSue

    Oakman's DBS Adventure

    Hi! I'm sitting here in the middle of July thinking about Oakman's surgery. You can do this! I had GPI DBS on March 10th of this year with the battery pack put in on 3/22. That puts me about 4 months out. I am grateful for Kim's wisdom as I too have realized that DBS is a process rather than an "event." I made jokes about becoming a cyborg and had everybody focused on that first surgery...but it's so much more! The second surgery was more invasive, thus more of...everything! I had my 4th programming appointment yesterday and I think we're on to something good here. However, I'm still trying to manage my expectations and think 6-9 months until it's all finely tuned...which will last for 20 minutes and then the dance goes on. I've had a couple of moments where I asked myself if it was worth it. I say YES!
  8. Hi! I'm new to this forum...diagnosed 8 years ago...have probably had PD for 15-20 years...60 years old...headed toward DBS due to dyskinisia and nasty off periods...wondering what others do to to be more comfortable until the next dose kicks in? Moving seems better than plopping down in a chair but even moving gets really difficult. Glad to see some comments about cannabis. I live in WA so no legal issues. How do you know what strain to get and whose knowledge is credible?