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    • #19013
      Ally
      Keymaster

      My sleep is one area of my life that has been significantly and adversely impacted by the COVID-19 pandemic, and I think it’s partly because I’m experiencing more stress than usual (anxiety/worry about the future and health of my loved ones; stress related to working from home and never truly being “off the clock” with my laptop always in view; more time in front of a blue light emitting screen and less time outside or with other people).

      I recently moved house and my new place has blackout shades in the bedroom, which seem to be helping immensely. I moved in on Saturday and I’ve slept really well every single night. I hope that improving my sleep quality will help me cope with my stress better.

      Have you been feeling more stressed lately? Do you think it’s because of the pandemic? How are you coping?

    • #19029
      Toni Shapiro
      Participant

      Hi Ally,

      Your post has prompted me to write. I too suffer from sleep issues and agree that the fallout of that adds to my daily stress and anxiety.

      In just over a year and a half, since my official diagnosis, I have gone from minimal function restrictions due to my PD to significant changes both motor and non motor. I started out very positive and grateful that I had PD rather than ALS or some other horrible disease. I had no sense of being depressed and I was in high spirits. People would remark on what a fantastic attitude I had.

      I knew little about PD and was very interested in learning more. I was surprised how complicated it all is and how symptoms are not the same for everyone. Although I realize the best thing for me is to focus on today and move forward, I am stressed and anxious and depressed about what I think is a very fast progression of my PD. I thought it is suppose to be slow moving. I can’t help but wonder how long have I really had it? My neurologist has suggested I had it for a few years before diagnosis but I had tremors on my right side for at least 10 years. I always thought it was essential tremor until I was told if you shake at rest, which I have always done, then it’s PD. All the stress of not knowing is really getting to me because I think knowing the timing would help me to gauge where I am at at this point. Certainly I couldn’t go from where I was a year and a half ago to using a walker unless I have had it for a much longer time or can I?

      Has anyone else had a quick progression? Any insights to this would be helpful. Please note that Yes,I know the research and I exercise, I go to physio, massage, I have a PD counselor, I take medication for anxiety and I do everything I can to be the best I can be. I also know I can’t dwell on this and I need to move forward.

      Thank you for this forum. I very much appreciate it.

    • #19030
      Kam
      Participant

      Toni, I private messaged you :).

    • #19036
      Robert
      Participant

      Hi Toni

      And good topic Ally.

      I have had what most would consider a very rapid progression too.  My doctor’s were surprised at this and it took a year and a half to get the meds to where they seem to be working.  They finally realized that starting slow and adding things slowly was not working for me.  Enough of the baby doses!  This guys got a problem!  Let’s try the maximum doses for this one!  And so far it works.  My med program is to keep me flooded in Sinemet 24/7.  I have to have full coverage at night to be able to sleep.  Until we figured that out I was miserable.  With the usual disclaimers that we all know about yadda yadda everyone is unique etc. yadda yadda. (If you are new to this and don’t know what I mean by this – when you have met one person with PD you have met one person with PD.  Every one of us PD people has a unique and separate version of PD that is specific to only us.  What the heck kind of disease is that, you ask.  Well, if you have been told you have it, then you know!.  Right?  We  PD people call this the “usual disclaimers’ when discussing our particular PD and our particular meds and treatment plans and such so as to not imply that what works for one will work just as well for any other.  We PD people are adamant about not telling each other what to do.  We may kindly and carefully share what we do and what we may have heard others are doing.  Everyone has to decide what to do for themselves. with the help of a good PD doctor as part of the process). Anyway, that is what is now working for me.

      Best regards to you on this “Marvelous” PD journey.

      Robert C

       

       

    • #19038
      Toni Shapiro
      Participant

      Hi Robert,
      Thank you so much for your post. I really appreciate you taking the time,especially as your PD is also fast pace. I have only found one other that has the same problem. I will be having my neuro doctor up my meds. It sounds like it will be the best thing for now. May I ask when you were diagnosed? Also is it just motor symptoms that are getting worse quickly or is it all non motor? Thanks again. Take good care.

    • #19039
      Toni Shapiro
      Participant

      Hi again Robert,
      Toni here. I just want to add how much I liked what you said about not telling people what to do. You post was perfectly worded and I appreciate it. I will be seeing my neuro in September if I can wait that long for upped meds. May I ask your doseage to keep in mind when I see the doctor? It sounds like it is helping. Thanks again

    • #19048
      Sharon Fisher
      Participant

      <p style=”text-align: left;”>Hey everybody. I thought my PD was progressing slowly but that is changing and I am now having off times and dystonia. The fatigue, depression and apathy are a struggle. The stress of all that is happening is definitely making it worse. I am tired of being isolated and alone all the time. I am grateful for life though and know this is necessary to keep everyone healthy.</p>
      How are you all coping with all of this?

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