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    • #15599
      Ally
      Keymaster

      “How are you?” is such a commonly asked question that I hardly think twice about it these days. Rarely do I say anything beyond “Busy” or “good” or “busy but good!” even if that isn’t really the case. Unless I’m talking privately with someone I know very well, I rarely open up and share honestly about how I’m really doing (be it good or bad).

      What about you? How do you answer the question? Like me, do you have standard quick response for most people, or do you take the time to really answer the question honestly every time?

    • #15605
      JulianH
      Participant

      Like Ally I usually give the quick response.  or sometimes “challenging” or sometimes I say (truthfully) “I am very lucky, it has been 12 years since diagnosis and it’s progressing slowly”. Or  “now I know what high maintenance really means”, or “i am learning too much about medical science”  or “fascinating disease if you don’t have it”.   I’d like to find some more humorous responses, because I think maintaining a sense of humor is a big help to yourself as well as  to those around you.

      • #15628
        Ally
        Keymaster

        Julian, I think that’s a great approach. I’m also working on being honest/direct about my challenges while also maintaining a positive and grateful mindset. Humour is great for taking the edge off hard news, too. 🙂

    • #15646
      Bob Hodgson
      Participant

      My standard answer is “great” because if I’m not it lifts my spirits. Truth be told if I really think about all I have to be grateful for I should change my response to “fantastic!”. Have a great day!

      • #15647
        Jean Mellano
        Participant

        Great attitude Bob!  I usually say ”  Do you really want to know?”  LOL

      • #16319
        Ally
        Keymaster

        Love your positive attitude, Bob! I bet it’s contagious. 🙂

    • #15697
      Lou Hevly
      Participant

      Can’t complain, or I’m fine.

      • #15706
        Jean Mellano
        Participant

        good answers lou, sometimes i  am just too tired to explain…

        • #15718
          Lou Hevly
          Participant

          When anyone tells me I’m “looking good” I respond, “That’s cause I’ve got my clothes on”.

        • #15719
          Jean Mellano
          Participant

          lol

        • #16115
          Jo S.
          Participant

          Hahaha! Good one, Lou! I get the “but you look great” response quite a lot. It’s a bit flustering, as I know people are trying to be complimentary, and yet it totally discounts how I actually feel (and diminishes the far-reaching effects and challenges of this disease).

        • #16318
          Ally
          Keymaster

          Too funny, Lou! You have a great sense of humour.

    • #15767
      Marcus Sutherland
      Participant

      Doing well, unless it’s a close friend they know better. I try to stay positive.

    • #15873
      Jean Mellano
      Participant

      franciso, thank you for sharing… here is english translation:

       

      To friends I say * Like Steel * To the curious * Never Worse *. I do not stretch much. I prefer to talk about other topics.

    • #15896

      It’s a habit to call this question “I’m fine.”
      I’m not really good. However I like to say, “Well, let’s be good”.

      • #15914
        Jean Mellano
        Participant

        Mehmet, i think you are on to something!  By saying you are good may help you to be ‘good’ even if you dont feel that way

    • #15869

      Aos amigos digo*Como o Aço* Aos curiosos*Nunca Pior*.Não me alongo muito.Prefiro falar sobre outros temas.

    • #16116
      Jo S.
      Participant

      I generally say that I’m doing well, especially if it’s someone I’m not close to or who doesn’t know I have PD. I haven’t told a lot of people, but with those I’ve told, I might say, “I’m doing okay,” or “So so,” or something along those lines if I’m not feeling particularly well right then. I guess it all depends on the person and the circumstances.

    • #16298
      Tahmy Moore
      Participant

      Not to be so critical, but when I’m asked that question I always think. . . “Do you really want to know?”   I think most people ask that question because they don’t know what else to ask, but they really don’t want to know the answer.  So, it’s just easier to say, “Oh I’m doing great.”

      The one I get asked the most is, “Are you limping?  Did you hurt your leg?”  I know I shouldn’t, but I enjoy saying, “Oh, no.  I have Young Onset Parkinson’s disease.”  Nine times out of ten the person is at a loss of words and I just smile.  Then they usually say, “I’m sorry.” And I always say, “Don’t be sorry.  I’m not.  I’m actually lucky.  Do you realize the percentages are so low for women my age to develop YOPD?  I feel lucky that I’m one of those few women in the world.  God must have something really special planned for me.”  🙂

      • #16301
        Jean Mellano
        Participant

        i too think to myself “do you really want to know?”  i think this is an issue that afflicts anyone with a chronic illness.  keeping our sense of humor about it helps.

    • #16309
      Carol Rothfeld
      Participant

      When asked how I am I sometimes say “I’m hanging in” or I’m here. Only close family really want to know how I actually am.

    • #16313
      Jean Mellano
      Participant

      carol,  so true, most people have their own crosses to bear and do not want to hear our woes 🙁

    • #16402
      Jacob Drollinger
      Participant

      <p style=”text-align: left;”>I normally just say, “good” because I will usually appear no worse than when you last saw me. The truth of the matter is that I am almost always doing very badly. After struggling with this disease for 31 years now, I am about ready to throw in the towel!</p>

      • #16428
        Jo S.
        Participant

        I can’t imagine living with PD for 31 years … although, I probably have been living with it for 15-20 years (as that’s when I first started to have symptoms). I was only diagnosed earlier this year, but I can honestly say that there have been days when I would have gratefully thrown in the towel too. PD can do that to a person. But I truly hope that you aren’t at that point yet (at least not every day)!

    • #16426
      Jean Mellano
      Participant

      Jacob, you are still standing and here to talk about it.  PD is such a frustrating disease and you have been battling it for so many years. Hang in there.. I understand how you may feel. I cant remember when I last had a good day..

    • #16438
      Dan
      Participant

      Compared to some folks who have been living PD every day for 30 + years, I feel fortunate. Diagnosed in 2009 and retiring in 2010 due to the various implications and complications this insidious affliction affords, my journey seems short. Having read many of the posts on these forums and consumed what seems like buckets of medical preparations, encouragement from any quarter is welcome. The challenges are constant, exhausting, frustrating, and at times a bit embarrassing.  I worked all over the world, travelled to many places.  Often under varied conditions of questionable safety, food quality, sanitary conditions, ect. and continuation of this regimen was impractical, thus retirement became option 1.

      I applaud those who retain a humorous outlook and offer their encouragement. Sharing daily battles may lead to new approaches for many of us.

       

    • #16440
      Dan
      Participant

      Carol, Jacob – help keep me going too. I can’t know how you feel, but I can guess. Someone once told me that big challenges were like eating a large elephant. If you start at the tail, you get the nasty bit over with first and by the time you get to the front part that eats peanuts, the taste gets better. I’ve tasted lousy peanuts before, still working on it.

      • #16444
        Jo S.
        Participant

        Hi, Dan. A sense of humor can help everything (even PD), and when we don’t feel very humorous, others who do can help us with a laugh or two. Your post about the elephant gave me a good chuckle for the day, so you’re helping to keep me (and others) going, and hopefully we can return the favor. Thank you!

    • #16437
      Dan
      Participant

      My standard “Excellent, but I’ll get better” works most of the time.

      • #16460
        Jo S.
        Participant

        LOL! That’ll make them think twice, Dan! 😀

    • #16439
      Dan
      Participant

      Thus, “Excellent, but I’ll get better”, seems as suitable a response as I can muster.

       

       

    • #16872
      Scott Milstein
      Participant

      I haven’t told many people so I just usually say I’m doing great. If they ask about the limp I just usually just say it’s my back. If it’s someone I told I may go a little bit deeper but generally I keep it simple.

      • #16890
        Ally
        Keymaster

        Hi Scott, thanks for sharing. Have you given any thought to when you might want to start disclosing your diagnosis, or are you going to try to keep it private for as long as possible? Can I ask why you’re not sharing it with others? (Sorry if these questions are too personal – you’re under no obligation to respond to these either!)

    • #16885
      Jean Mellano
      Participant

      Scott, keeping it simple is probably the best approach.  Everyone has their own challenges to deal with and they probably do not want to hear about outs…

    • #16892
      Scott Milstein
      Participant

      Hi Ally, I don’t mind answering at all. There are a few people who do know. I’ve been telling them as I see them. Since I work for my Brother in law, him and his wife know. I have told some of our closest friends. ( interestingly they all were fighting back tears and I’m telling them have faith because I’m doing everything to fight it).
      It’s not really that I’m trying to be private. My main concern is that I have 87 year old parents and 85 year old in laws. They , of course have their own issues. I don’t want to give them more to handle. I do limp from PD but they buy it being my back because I’ve has a few back issues. The day may come that I have to tell them but for now I feel I need to do that even though it’s hard. ( my PT, who also has PD never told his mom. I know someone who told his parents he was going to a convention when he had heart surgery). I’ve told those who know please never put it on Facebook because even in their 80’s my parents and in laws look at that.

    • #16906
      Scott Milstein
      Participant

      Hi Mary Beth,

      I thought I would feel more relief than I did feel.  This might be because I’m more concerned about my parents and in laws. I still have a few friends to tell. I think this is all part of the acceptance phase, which I think takes a while. I’m out there exercising and my local fitness place has a PD specific program. I think in my mind so far that’s more important than the process of letting folks know.

    • #16909
      Roseanne
      Participant

      I usually just say “I’m good, how are you doing”?

      I also haven’t told anyone other then my kids and my parents. And I don’t think my parents really understand parkinson’s because whenever my mom sees my tremor in my hand she will say to me when are you going to go to the doctor and get that fixed. I have to laugh to myself because I wish it was that easy to fix. My parents are in their 90’s and I’m the one taking care of them so I don’t elaborate about what I’m going through because I don’t want them to worry about me. I haven’t told anyone at work because I feel like people would look at me differently. And I haven’t told any friends or my siblings either. I guess its just kinda hard to start that conversation.

    • #16919
      Scott Milstein
      Participant

      Mary Beth, I too do Rock Steady. I never thought I’d get into boxing but I like it! I just keep moving.

    • #16925
      Jean Mellano
      Participant
    • #16928
      Jean Mellano
      Participant

      Roseanne, that must be difficult, having aging parents to care for when you have a chronic illness and you want to spare them from knowing what you have.  i believe scott milsten (an earlier poster in this thread is in a similar situation with aging parents.

    • #16938
      Scott Milstein
      Participant

      Jean, thanks for the articles. They are on my reading list for the weekend.

    • #16939
      Jean Mellano
      Participant

      scott  i hope you enjoy them.  rsb is my support group.  it is wonderful being with people who can relate to what you are going through..

    • #16948
      Maria Cesena
      Participant

      I always say, Alive and well by the grace of God. I don’t believe people truly want to hear the truth and generally ask out of politeness. I may be judging people too harshly, but I am still angry with this diagnosis and am doubtful and suspicious of almost everything.

      • #16950
        Lou Hevly
        Participant

        Dear Maria,

        I think there are people, and then again, there are people (See? I’m a truly profound thinker!). Some are really concerned, especially if they’ve just learned you’ve got PD and others are just going through the motions. And it’s hard to really tell who’s who. But as it is for the shepherd, for us it’s worth trying to separate the sheep from the goats.

        Anger is good for catharsis, for the “purgation of emotions”, but it’s probably not a good place to stay. And has being diagnosed with PD been responsible for making you “doubtful and suspicious of almost everything”? I can’t really empathize that well, because I’ve so far been “lucky” and had mild symptoms (Well, if I were really lucky I wouldn’t have got PD in the first place!), so if having PD has caused major disruption for you, then all I can say is I’m sorry for you.

        Finally, here’s a relevant quote from Michael J Fox’s web site:
        «Many neurologists report that symptom deterioration is often significantly slower in those who take a positive and proactive stance toward their condition than in those who do not.It would be ridiculous to suggest that a positive mental attitude is achievable all the time. But we have found various methods that help enormously to remain upbeat about life.»
        https://files.michaeljfox.org/Guide_for_the_Newly_Diagnosed.pdf

        All the best,
        Lou

    • #16952
      Jean Mellano
      Participant

      Lou,  thanks for your valuable  input.  Maria, you are not alone in feeling anger.  it can be a natural response to this disease.  We just cant stay in that place. I struggle with that myself.

    • #16956
      Scott Milstein
      Participant

      Lou,

      Great post. I was diagnosed in September and I haven’t had that angry stage. I think that is because of two things. First, I finally had an answer as to why things were happening. Second, I jumped into therapy and exercise immediately.

      I may get angry yet but at least for now I’ve been ok.

      • #16958
        Jo S.
        Participant

        I feel the same way, Scott (about Lou’s post and about not having gotten angry yet). I was diagnosed earlier this year, and like you, I was oddly relieved because I finally had an answer regarding all the things that I’ve been experiencing for years on end. And, also like you, I’m trying to be proactive. That said, I have had times of very deep sadness when I am physically at my worst and no amount of exercise or therapy helps.

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