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    • #19189
      Ally
      Keymaster

      Who was the very first you told about your Parkinson’s diagnosis? Why did you choose to tell them first? How did they respond? What questions did they ask? Is this person still the one you lean on the most for support as your disease progresses, or has your relationship with them changed since then?

    • #19203
      Toni Shapiro
      Participant

      I told my husband first because he was in the waiting room when I had an appointment with my neurologist. When I came out of the Doctor’s office my husband asked what happened and all I said was, “I have it.” Apparently I didn’t ask the doctor any questions so I couldn’t answer any of my husbands questions to me. Going into the appointment I was sure I didn’t have it even though my GP had said I did. I had an explanation for everything that was wrong with me and insisted PD wasn’t part of it. At the time I knew very little about Parkinson’s yet I just sat there, thanked the doctor and walked out the door.  I didn’t ask him anything.  He came after me in the waiting room and handed me a Parkinson’s brochure and we left.

      Yes, my husband is the one I depend on most but our relationship has changed. I get a lot of help from my PD counselor and I am so grateful for her.

    • #19207
      Mary Beth Skylis
      Moderator

      That sounds like it was really heartbreaking, Toni. My Dad was in denial for a while. He was creating a triage of doctor diagnosis’s. He told us that one doctor said he had PD but another thought he was dealing with a tremendous amount of heavy metals in his system. It wasn’t until a few years after the symptoms became noticeable that he really started to acknowledge that he has it.

    • #19239
      Jo S.
      Participant

      My husband was the first to know. Although he didn’t initially accompany me into the exam room, he drove me to the appointment and stayed in the waiting room. At the end of the appointment, the doctor asked me something that triggered me to tell him that my husband was in the waiting room, and the doc almost yelled at me, saying that my husband should have come to the exam room with me. I felt awful. How was I to know that he should have been there too? So I asked my husband come back and the doctor took just a few minutes to fill him in on the diagnosis. (I ended up switching doctors within the practice after that, as I wanted someone more empathetic. I went with a woman who turned out not to be all that empathetic either, but at least she is slightly more so than the original doctor.)

      Next, I told my sister, who is a retired doctor — her specialty had been physiatry (the study of physical medicine and rehab), so you’d think she’d know a little something about PD and be understanding. That wasn’t the case. She basically said that she has a few friends with PD and they’re doing great. (Honestly, couldn’t you just wring someone’s neck when they say that?!) The implication was that I should be doing great too and that PD is no big deal. In fact, I just spoke with her today (we live in different cities) and she said the exact same thing as before (her friends apparently are still “doing great”). I explained that everyone is different, that PD affects every part of the body (not just what you see on the outside), and that her friends probably aren’t doing as great as she thinks but that they may say they are or are trying to appear like they are because nobody wants to hear us complain.

      The next person I told was my mother, who was in the relatively early stages of Alzheimer’s. She seemed to understand at the time, but since then she has rapidly progressed greatly in her disease and has basically lost her long- and short-term memory and can barely speak.

      Next, I told an old friend/colleague that I ran into while shopping, and she casually said in response, “Well, at least it’s not cancer.”

      So, in terms of empathy and support, I’ve pretty much had a no-hitter — except for my husband, who has been my rock and greatest champion. I would be utterly lost without him.

    • #19241
      Toni Shapiro
      Participant

      Hi Jo,  I am so sorry about the lack of empathy you have received. It made me sad and angry that all that happened to you.  I don’t know what it is about PD but it seems to trigger those kind of supportless, (is that even  a word), responses. I am very happy you have your husband.  I am also sorry about your first experience with the doctor. What a way to be introduced to Parkinsons. My husband was in the waiting room too.  I never thought to ask him to come in because I was so sure I didn’t have it.  He accompanies me to all my appointments now.  It’s helpful because I forget or stumble over my words and he clarifies either to me or for me. I can’t imagine how I would have felt if my Doctor yelled at me to bring him into the room. I just wanted to reach out to you and tell you that I hear you.  I think there is a thread somewhere in here about the frustration of talking to family about it. If I find it I’ll post it to you on this thread.  Take care.

       

    • #19245
      Jo S.
      Participant

      Thank you SO much, Toni. Your compassionate reply truly made my day. I’m curious to see the thread about the frustrations of talking to family about PD. If you come across it, please let me know. My husband accompanies me to all my appointments now, too (for the reasons you mentioned as well to compensate for my memory, which tends to fail me just when I need it most). I greatly appreciate your thoughtful and supportive words more than I can say.

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