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    • #24823
      Ally
      Keymaster

      How do you feel about the word ‘disabled’? Do you use this word to identify yourself or to explain having Parkinson’s to others outside of the PD community? If you are using the word disabled, do you remember having any difficult feelings around adopting it?

    • #24832
      Anonymous
      Inactive

      NO NO NO

      I’m having enough trouble with accepting and coming to terms with this, I was diagnosed on 23rd May 2019.

      I don’t tell my work for fear I will lose my job (I know that is discrimination and if I am not a safety risk that can’t fire me) and I have become a  maniac in getting things done.

      Until it becomes obvious and it will make things easier for my family (with assistance packages etc), I will not be identifying as disabled!!!

      • #24837
        Efward
        Participant

        The moment I first felt disabled, I was comfortable describing myself as such. Sometimes it seems more accurate than other times, but I’m not going to convince very many people above the age of six that I’m not, at some level, disabled.

        • #25059
          Ally
          Keymaster

          Thanks for sharing, Efward. Has anyone ever challenged or questioned you on using the word disabled?

    • #24839
      Jo S.
      Participant

      I don’t identify with the term “disabled.” I’m fairly “abled” with most things, and I see people who are significantly worse off than I am physically. In fact, I’m fairly certain I appear perfectly “normal” (aka not disabled) to most people. My worst symptoms are those that others can’t see, but for the most part, even those symptoms don’t make me feel disabled, at least not at this time. (Maybe catch me next week, and I might sing a different tune! haha)

      • #24841
        Barbara Ford
        Participant

        Jo, I was diagnosed at the age 65. At that time, I felt exactly as you do : I appear perfectly “normal” (aka not disabled) to most people”. Even my doctors would forget that I was a PWP.

        In April of this year I had DBS, and now I am disabled. Not from tremors, but from dyskinesia. Driving is out of the question since the surgery. Being with friends is uncomfortable. It feels like my life, as I knew it, has stopped.

        It is my hope that we can find a way to control this difficult symptom and that once again, I will “appear perfectly “normal” (aka not disabled) to most people.

        Any words of wisdom, anyone?

        • #24849
          Jo S.
          Participant

          Oh, Barbara, that is just awful! What a difficult thing to experience. I was under the impression that DBS was supposed to help control symptoms, not make them worse. I also thought most PWPs could reduce their medications after DBS. Is that not the case? I’m wondering how you ended up with such terrible dyskinesia.

          I was diagnosed at 64 in 2019, although I’ve had symptoms for probably 20 or more years. My meds have finally been “sorted out,” at least for now, but I do have a touch of dyskinesia, although it happens when my meds are due rather than when they’re at their peak.

          I’m wondering if there is some adjustment that can be made regarding the DBS or your meds. Do your doctors have any advice? I’m so very sorry that is happening to you.

        • #24981
          Mitchell Niese
          Participant

          Barbara, so sorry to hear your DBS experience. Like you I had DBS this past April. But, unlike you my outcome has been 100% positive.

          Don’t be discouraged, it may take some extra effort to get it “tuned in” just right for you. During my programming sessions I’ve watched my left hand as it appeared to be possessed. They were able to open and close segments on the electrode to eliminate that side effect. Keep working on it. I’ll pray for you to find success, you deserve it for being so brave.

          Ps.. May I ask the manufacturer of the DBS system?

        • #25002
          Barbara Ford
          Participant

          Dear Michael,
          Medtronic is the unit.

          The tremor on my left side is controlled and now I am figuring out how to stop the dyskinesia that was much worse since the DBS surgery.

          I also have developed a major tremor in my right foot but that seems likely to be caused by anxiety, or stress.

          Now if I can figure out how to control the dyskinesia. Any suggestions? It seems to stem from my right side also.

    • #24840
      Krukar
      Participant

      Hi Ally,

      What a great question. I am free to tell people I have Parkinson’s . Beyond that I really let them decide how they will label me. This life is a struggle with or without Parkinson’s. So I try and do the best I can. Blessings, Mike

       

    • #24847
      richard cooling
      Participant

      I really dislike the label, “disabled.”  Let me explain:  Diagnosed at 55, I was forced to retire my law practice at 60 because of problems with walking, diskenesias, holding urine, fatigue, memory and concentration (among other things).  On advice, I applied for  SS disability and was promptly denied.  Frustrated, I appealed the decision.  When SS granted the appeal and disability, I cried because it had finally sunk into my mind that I was now an officially disabled person (if PWP were not enough!).

      I am now 62 and my greatest joy is daily aerobics in the YMCA pool.  Despite the fact that my symptoms are now worse, the greatest Parkinson’s challenge is in my mind.  I don’t think of being disabled or identify as disabled.  Rather, I am a PWP who has physical limitations.  The tough part is fighting my mind to be happy and optimistic with what I’ve got left, as compared to what I lost.

      So, I am only disabled in the legal sense.  And there is one other good thing, I can use my handicap placard to park when the lot is full!

       

      • #24925
        J Steven Mosley
        Participant

        Richard Thank You for the post.

      • #25060
        Ally
        Keymaster

        Thank you, Richard, for sharing your experience. Really resonated with your comment about mindset.

    • #24886
      Ally
      Keymaster

      Just wanted to write to say thank you to everyone who replied to this topic. I am still processing the diversity of responses and perspectives that were shared. Thank you, all, for sharing your views on this topic.

    • #24924
      J Steven Mosley
      Participant

      I have a can do spirit. It does not matter how long it takes to complete a task, as long as I complete it. I may have limitations, but I certainly do not identify as “disabled”. I get heated when I hear that word.

    • #25027
      Lori DePorter
      Participant

      Most of the time, I do identify as disabled. There are some situations when I do not if it is irrelevant to what is expected of me. It is challenging to adapt to career changes with PD.

      • #25061
        Ally
        Keymaster

        Thanks for replying, Lori. How have you adapted your career to life with PD? Have you written about this for your column?

    • #25076
      dawn
      Participant

      I do identify myself as disabled. Mostly because I’m using a wheelchair now a days. It would be impossible to deny the fact that I am disabled.
      I am 80 yrs old and I don’t need to pretend that I can do the things I used to do even 5 years ago.

    • #25095
      Mr. Morris Colin
      Participant

      Interesting question

      I am a newbie to this terrible condition I was diagnosed only six months ago but in retrospect I had it for at least a year before.
      anyway I am quite active and have been to customers and sites recently.
      But two weeks ago I was on a site and I felt that my walking was not what it was.

      I limped more than usual and I was shaking and slower than I normally am.
      all that aside it was when people on the site kept asking me if I needed assistance with my bag and the walk I realized that I was not my best

       

      do I feel different yes do I feel disabled I am still thinking about that.

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