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    • #18415
      Toni Shapiro
      Participant

      I am wondering how others handle family and/or friends who want you to participate in things you don’t want to do or can’t or who want you to react differently than you are able? I had told everyone close to me how stress and anxiety makes my symptoms so much worse and that I need to pace myself. I have a difficult time finding words to express myself and need people to be patient. I have learned to monitor myself and know when I have had my limit of stimulation and need to retreat before I become anxious. I have expressed it a number of times but some people find it difficult to understand and pressure me. I love these people and it’s not that they arn’t supportive in other ways but the frustration I feel at my inability to do the things I used to and the way I used to do them is bad enough but when others chime in wanting me to do this or that my frustration, stress and anxiety goes over the top. I have shared videos and printed information regarding PD so they would have a better sense of what it is like for me. I get overwhelmed easily with too many people hitting me with too many things at once. Does anyone else have this issue and how do you handle it?

    • #18422
      Allie J
      Participant

      Hi Toni. I can relate very well to your post above. You have expressed this very well. I too find I have to pace myself.  Too much stimulation over a few days will result in exhaustion and my brain becoming non-functional and unable to think. It is as if I’ve used up all my supply of dopamine and need to retreat for up to 5 days to produce enough dopamine to recover my thinking ability. This is very restrictive and debilitating. Fortunately my family and friends seem to accept  when I say “No” to further activity (although I do wonder if they think I’m just being lazy). I find that over stimulation does seem to exacerbate symptoms such as fatigue, stress and tremors. Even catching up with friends and having conversations seems to deplete the dopamine and tire the brain afterwards. This is how I view it anyway.

      I’m sorry your family and friends try to encourage you to participate when you feel you’ve reached your limit. No doubt they mean well but I think it must be difficult for anyone to understand how the brain has its limitations when there is insufficient dopamine for it to function fully. I can only suggest that you are firm and decisive in stating you are not up to it as you need recovery time. Good luck and I hope you can resolve this.

    • #18423
      Toni Shapiro
      Participant

      Allie J, Hi,

      I can’t thank you enough for your post. It helped me so much to read what you had to say. It was awful thinking I might be the only one who goes through this and I would doubt myself over and over. I want to copy some of your wording because it so much reflects my experiences.

      I messaged my sister, and in detail described what her pressure feels like to me.  She was very open to listening to me and thinks she has a better understanding now.  I have told her all this before but I think she so much wants me to be the way I was that it’s too hard for her to accept. I think this is something I will have to remind friends and family about.  So all is good for now Allie.  Thank you. I will take your advice for future when this happen again with her or others.  I will be firm.

    • #18424
      Allie J
      Participant

      Toni, you are welcome. I hope this works for you. I found it comforting to find someone else express the same as I felt. I don’t feel so alone in this. Other PD people I know don’t seem to feel this but as everyone says, we are all different.   I feel that just managing activities of every day living, such as meal preparation, housework (though that is minimal these days), juggling meals and medications (levodopa/carb four times a day), exercises daily to help the PD, shopping, gardening, managing business affairs, medical appointments and resting etc leaves me very little time for other activities. Especially as I’m so much slower these days. However I do enjoy my social activities with friends but do have to limit them. Thank goodness I am retired and not still trying to go to work as well. Of course at the moment we are all in lockdown which restricts social and outside activity. I must admit I’m enjoying having to stay home.

    • #18434
      Paul D Lefebvre
      Participant

      Toni and Allie, Thank you so much for your insightful articulation of this problem. I commend you both for the way you have dealt with it; and you will probably have to from time to time. ~ I too experience this problem, mostly from our eldest son. I know he means well, and is trying to be sure I’m included and not neglected. But I’m conscious of how often I’ve had to decline his offers (he’s a very good cook and likes -like his mother- to feed people). But Allie, I’ve had the same notion about being dopamine depleted, and that that is difficult for others to comprehend. Our other four children seem to allow me more space, and that is true of our adult friends as well, though some of them are pretty quick to offer suggestions about what I may enjoy. But they usually don’t persist. ~ I am a natural-born introvert so I am also (cautiously) making the best of this social isolation we are finding ourselves in; it allows me time to recoup somewhat. Thank you both for starting this conversation.

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