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    • #23524
      John Citron
      Participant

      I don’t know any other way to say this other than what the topic title says.

      The normal folks have no clue what we go through! My family for one don’t understand no matter how many times I’ve explained to them that it takes me a bit longer to process information and to perform tasks. I’ve noticed this is more noticeable in the morning before I’ve had my first dose.

      They accuse me of not listening when I don’t jump up to do things right away, or not doing things quick enough and they end up literally pushing me aside and taking over the task. This happened a week ago while my brother and I were painting the living room walls. I was tasked with washing the woodwork and walls with some TSP and a rough sponge. Because I wasn’t cleaning fast enough, I was yelled at and told to get lost.

      The thing is, it’s not just my family that has done this. A so-called friend of mine, or now ex-friend, did this to me on a trip we took together. The trip was a nightmare to begin with complete with a car that died requiring me to rent a vehicle in order for us to travel.

      We stopped at a fast-food restaurant during our travels. I had trouble getting out of the rental car and keeping up with my “friend”. It didn’t help that this was summertime with temps hovering around 98 F (37 C) with 85% humidity, which made me feel faint.

      I got out of the vehicle and stood up slowly since I was feeling dizzy and wobbly. I also was shuffling, and my gait was off. I heard what he said, but it took me time to line up the tasks in my mind what had to be done. It’s those extra seconds or minute which sends people over the edge, I guess.

      We went into the restaurant and got our drinks and table. It was then I said my piece because I had been holding it inside for a few days since this wasn’t the only incident where this occurred because I was asked to get something out of the car and didn’t jump immediately.

      I told my “friend” that I am not stupid. I am just slower thinking and slower doing and that it takes me time to process what’s being told in order for me to carry out the tasks which will take me a bit longer to perform. I said this loud enough for other to hear and glare at him while this big brute of a man shrunk down to nothing in his seat.

      He was a bit nicer afterwards, but not by much. We no longer speak even though he has reached out on occasion.

    • #24948
      Sherman Paskett
      Participant

      Wow, @John Citron, I am so sorry. I have never had anyone react to me in that way. Friends can come and go, but family you are stuck with. They need some empathy training, if that is even possible. If you can find a way to sit them down see if you can get them to watch this Youtube: https://youtu.be/N3zSSV11bLA.

      If you are at all like me, you have worked hard all your life. You are not comfortable sitting around doing nothing. Your family has seen that side of you, the hard working can-do and will-do anything person who now struggles to get out of bed. What are they thinking? Has he become lazy? On the outside you look the same, but on the inside it’s hard to do anything, just putting one foot in front of the other when the meds are off is a severe mental effort.They don’t see what is going on inside to make that foot move an inch when the meds are off.

      The only other idea is to check with your neurologist to see if there is a support group in your area or a counselor who can help you bring your family into your new reality. Take care and I wish yo the best with the family. PD is tough and should not be made tougher by uncaring people.

    • #24950
      Mary Beth Skylis
      Moderator

      John, I’m so sorry that you’re experience that. I don’t have Parkinson’s but I have an autoimmune disease, and I’ve felt similar feelings before. It seems, to me, like people make assumptions about our abilities and performances, without having the full picture. Maybe it’d be helpful to educate your immediate friends and family about some of the issues that you’re facing, so they can better understand the situation.

       

    • #24969
      richard cooling
      Participant

      wow, that’s an incredible story and that guy is definitely not your friend!

      i too can’t multitask or process as quick as i used to, and your story reminds me of a couple of my own.  first, it’s being reprimanded by my otherwise loving spouse who forgets at times why i brought home the wrong thing from the grocery, my inability to move in heat or cold, to understand a conversation in a crowded restaurant or my inability to act quickly in a complicated situation.  i deal with this by trying to explain it’s part of the disease process.

      but recently a 30 year friend and neighbor (who always tries to be protective) texted that he wanted me to join him at a concert, to which i politely declined.  he texted back that he knows i could go if i wanted to, implying that i have control over my symptoms.  i wrote back that i declined not because i didn’t want to go, but because i would be stiff, in pain and uncomfortable in a concert venue at that hour.  he never treated me as stupid, but his concert invitation felt like it.

      • #24995
        Mary Beth Skylis
        Moderator

        Richard, that’s a really interesting perspective. As someone who doesn’t have Parkinson’s (my dad has it), I would see that kind of invitation as inclusive and encouraging. I’d never thought that it could be seen as an insult. I think, sometimes, I could benefit from my dad being candid with me. I hope your friend was able to see where you were coming from.

    • #24982
      Sherman Paskett
      Participant

      @Mary Beth Skylis; gads yes, none of us have to dig very deep to come up with our own horror stories about insensitive people. A month ago I felt verbally attacked at church by a friend who asked my why we  are still wearing those stupid masks. I know the guy well enough to know if I didn’t break away fast it would become a scene. We were in the chapel and my meds were off at the time (not a time to engage in a debate) so I calmly said, “Well, I guess we’re just stupid,” as I tried to break away. He grabbed my arm and started going on about how COVID is caused by rebreathing our exhaust that gets trapped in the mask. I said, as calmly as I could, “Stop it,” as he blathered on. By the time I got out the third “Stop it,” I was shouting and then managed to break free from his grip.

      Later he apologized. I was not very gracious about accepting it. I would like to have a calm discussion with him, but I do not think it is possible, not in the current climate. Maybe after the election.

      Now, I have learned that any serious illness causes my PD to worsen measurably and my wife has her own chronic illness. We cannot afford to be sick — we are each other’s caregivers and we have not been sick with any transmissible illness since we started masking — but everyone I know has had COVID at least once and some as many as three times. Who is being stupid??

      • #24996
        Mary Beth Skylis
        Moderator

        Sherman, that story breaks my heart. I wonder if part of the problem is that COVID was so politicized? Many people forget that those of us who are struggling with an illness or disease don’t get the privilege of being unconcerned.

    • #24979
      Violet Ori
      Participant

      John…your topic hit a nerve with me. My husband has PD and I am not always understanding and patient. I believe my issue is that I am in denial and angry about what has been taken away from us by the disease. So, go easy on your friends and family. They are not evil but rather having a hard time accepting your limitations. Good for you for expressing your feelings….I know that is not easy.

    • #24989
      Debbie
      Participant

      I was diagnosed in 2010. You talked yesterday about how one with PD is treated like they were stupid

      Well my husband has had me make a list of my daily chores, things I should NEVER do, and his “list” of pet peeves, most of which are about me. I am yelled at several times a day, certainly not excluding the F word.

      I am told to get the F away from home, and that all I do is push his buttons to make him angry. He seems to forget who has PD, and that compassion is part of being a caregiver, which most times he is nowhere close

       

       

       

      • #24998
        Mary Beth Skylis
        Moderator

        Debbie, I can’t even imagine how much more difficult having Parkinson’s can be without receiving proper support and care. Do you have other people in your life who are supportive and able to offer a helping hand when you need it?

    • #25010
      Debbie
      Participant

      My sister and brother are very supportive but they live in Florida, and I don’t get down there often enough.

    • #25012
      Linda Skon
      Participant

      John and Debbie, I am sorry your friends and family have treated you this way. Not understanding another’s limitations is no excuse for being rude. I do have some ideas though about why people don’t understand those of us with PD.  Even if you have a noticeable tremor or shuffle, they don’t know or forget that you might have trouble adjusting to temperatures (I am too hot or too cold most of the time) and/or have non-motor issues (like my anxiety). I can keep up with my active toddler grandson for a period, and then I feel like collapsing from fatigue but my husband and daughter can’t tell unless I tell them. My closest friend has said that I appear “completely normal” and she forgets that I have PD. Almost daily I say to myself, “Now I understand why my mother with many years of PD was so grouchy!” I hope you find more supportive friends, but remember you need to tell them what you experience because they can’t understand unless you do.

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