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    • #20614
      Jan
      Participant

      It seemed to improve my on time but unfortunately I had some acute anxiety attacks that I felt were tied to entacapone, and I didn’t have more of them since I stopped the med. As I recall, it also messed with my sleep cycle.

    • #20050
      Jan
      Participant

      I wish I had faith like many of you have voiced, but I have yet to be convinced of God’s promise to us that He would only give us what was best for us. My mother died of pancreatic cancer and she was the only piano teacher in her rural area so after she died, a number of young students had no one to teach them how to play the piano. How could that possibly be what was best for them or for their rural area? She didn’t get the chance to meet some of her grandchildren or sew them a sweet stuffed bunny like she made for my daughters. How is  that what is best for those grandchildren? How does that show God’s faithfulness to us? And if the argument is that God didn’t give her the cancer, then the statement that “He would only give us what is best for us” doesn’t fit the scenario. And if Satan or the environment or her genes or her lifestyle or just dumb luck caused the cancer, then why wouldn’t the almighty & all-powerful God show His presence by miraculously curing her so that she could give glory to God and convince us doubters that God really does listen and really does want what’s best for us?

      I’m not saying that I am choosing to be bitter vs better as a result of my Parkinson’s diagnosis. I think being bitter is generlly a waste of time and I don’t feel like I have enough time as it is so I sure don’t want to waste it by feeling sorry for myself (though I admit that I have wasted some of my time in this way!). I think we can each find meaning in our suffering, and we can each find ways to make the world a better place because of our experience with PD, but couldn’t we do those things regardless of whether we believe in God, Jesus Christ, Allah, Hare Krishna, Buddah,  Yahweh, or none of  the above? I still worship, pray, and give glory to God (attending virtual services because of COVID) but it’s more out of hope that some of what you say is true, not out of faith. I have tried to see God’s hand in my life and in the world around me but it has definitely not been revealed to me at this point, though I am envious of those who are so convinced and so trusting and faithful that God is omnipotent and loving and ever-present. Feel free to pray for me to get there!!

    • #19986
      Jan
      Participant

      I’ve been curious about this product, too. Please update after you’ve tried it for about a month, Ron.

    • #19850
      Jan
      Participant

      I didn’t have a very structured exercise program before the pandemic, but I’ve found a number of online options with programs that I can do at home with no special equipment. It’s not as socially stimulating as an in-person class would be but I can get to the class even in bad weather & never have to worry about whether my meds will be working or not. Most of the classes are recorded and can be watched on your own schedule, which is good and bad (sometimes I find I need the structure of a scheduled time). Here are a few (free) online options that I’ve appreciated: Wisconsin Parkinson Association (WPA) has a class every M-W-F morning on Facebook Live. If you miss the live class, you can watch the video later. Mary makes these classes a lot of fun, & you don’t have to live in Wisconsin to participate. She also told us about  http://www.TotalHealthWorks.com which has live & recorded Brain & Body classes on YouTube so I try  to do at least one of their classes every week. The 2 people who run this are a lot of fun; they are the founders/creators of the Delay the Disease program.

      In addition to those 2 options, I sometimes want a non-PD exercise class so then I pull up a class from SilverandFit or from the YMCA’s ForeverWell program. There are daily Silver & Fit classes available for anyone to view; I think if you have a Silver & Fit membership through a Medicare plan, you get access to additional classes. Silver Sneakers is similar & I see that they’re allowing free access to their videos through 12/31. The ForeverWell program appears to be limited to YMCA members.

      I’ve also participated in some voice therapy/exercise classes. The Parkinson Voice Project has a class on Facebook (recorded & live).  And ADPA has a weekly sing-along class called Sing Loud that meets for an hour via Zoom every Wednesday afternoon. I hope all of this is helpful.

    • #19702
      Jan
      Participant

      Hello Beth,

      My doctor prescribed for me the lowest possible dose of Mirtazapine, which is an anti-depressant but seems to help people with Parkinson’s sleep. I take it once a day, about an hour before I go to bed. It also reportedly has reduced tremors for some people but I’ve not had that result. I started taking Rytary recently instead of the regular carbidopa-levodopa, and that change seemed to mess with my sleep so now I’m also taking 3 mg Melatonin about an hour before bedtime. I’ve read that this is not an immediate fix but rather it takes a week or two of regular dosing of this over-the-counter sleep aid before it might be effective. I wish you luck – everyone is different but I personally can relate to your frustration about sleep issues!

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