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    • #20425
      Ally
      Keymaster

      Living with Parkinson’s disease has it challenges, and some days are worse than others, but you can still live your best life – perhaps just in a different way than you did pre-diagnosis. Click here to hear Sherri Woodbridge’s tips for living your best life with Parkinson’s.

      What do you think? Are you living your best life or struggling? If you are living your best life – even if it’s not every day – what helps you do that?

    • #22847
      Robert Harris
      Participant

      Robert; B:1950; Dx:2005

      Ally:

      Here is my list of “what helps” me live my best life with PD.

      1. Get serious. Yes, this is the “fix your attitude” order. Most people seem to make themselves unhappy by obsessing on what they don’t have or by constant whining over their pathetic lives. And yet the live in a culture, economy, and technological sophistication superior to 99.9% of the world’s inhabitants. (How often do you drop to your knees and thank God for the cushy, high-off-the-hog lifestyle you enjoy?)

      Stop complaining about tiny inconveniences. “Oh no! I broke a fingernail! My life is ruined! Why, why, did this happen me? I’ll never recover from this disaster!” Instead of thinking (I and whining over what you don’t have, rejoice over what you do have. Instead of complaining that the ExcessOcost shoes you want are out of stock in your size, so you will  be unable to get them  before the big dance, when you expect sway that cute person by your attractive dress–instead of that, praise God that you  have feet and can walk, and complain without being arrested.

      Another way to phrase this “what helps” is to say, “Change your attitude. No one likes a  chronically negatived person.” It’s no excuse to plead that you have a right to whine and bellyache just because  you have Parkinson’s Disease. After all, everybody has something. If you don’t believe me, go to a local gathering  place (mall, warehouse store, coffee shop) and tell a stranger, “I heard about your problem.” You will get one of two answers: “Who told you?” or, “Which one?”

      Put your ego in your pocket and stop pretending (or believing!) that the earth revolves around you. Want to be liked? Like others. Be friendly. Pay attention to their concerns, hopes, fears, dreams.

      Having Parkinson’s serves  us as a regular reminder that we are mortal and will not be living  here forever. Take that as an admonishment.

      2. Since the first advice for “what helps” is to be serious about your situation (“Parkinson’s? Me? What? No, I’ve never even heard of it,”) and be open with others about it, a valuable adjustment to your view of things is to develop a sense of humor. If you have ever been around or made friends with a mortician, you’ll understand this advice easily. Life is made up of happy and sad things, the happy being those that bring us joy and laughter, and the sad being what seems like yet another challenge to our self-important sense of worth. (“Parkinson’s Disease? Do you know whom you’re  talking to? I can’t  have Parkinson’s Disease!”)

      A good sense of humor about your illness encourages others, with PD or with some other chronic malady, and even those with just the fear of some disease. Think, “This guy seems to be taking his  situation with confidence and happiness. Maybe I shouldn’t be so uptight  about it.”

      On the other hand, if you express a negative and depressed attitude: “John, how many widgets did we sell last month?”
      “I don’t know. Probably not enough. Haven’t you heard, I’m dying–dying I tell you–from Parkinson’s Disease. Don’t be surprised if I keel over before this meeting is over. Oh, woe is me!”

      Such an attitude will not only keep the sufferer down and miserable, but everyone he meets will be affected too.

      That wise ancient Greek philosopher Aristotle noted that not only does belief lead  to action, but action leads to belief. In other words, you come to believe the way you act, and you come to act the way you believe: act happy and YOU WILL BECOME HAPPY. And so will those you interact with.

      Conclusion: There is more than one book with a title like, “Laugh Your Way Well,”  or “Laugh Until You Are Happy.” A sense of humor or a few comedy movies won’t cure Parkinson’s, but you and those around you will experience a much better life than if you use the disease as an excuse to be Doctor Negative.

      [Look for Part 2 of this essay.]

      • #22849
        Robert Harris
        Participant

        Robert; B1950; Dx:2005

        What Helps You Live Your Best Life,  Part  2

        3. Get Organized. Parkinson’s throws a wrench into the machinery of you life, making planning, focusing, and completing tasks much more complicated and time consuming. So, while you are still able, take the necessary steps to make you current life your “best life” and your future life (where you will might be more debilitated) better than it otherwise  could be.

        Ideas:

        A. Find places in your home where you can have restroom support-bars installed (just like the ones in public restrooms).

        B. Go through those boxes filled with 50 or 60 years’ worth of receipts, junk mail, souvenirs, photos of people you no longer recognize, recipes you didn’t like, and so on. I’ve found that even after two passes through the paper junkpile, I still have way more articles, printouts, stuff I’ve written (I was a college professor and then an instructional design manager for many years), more boxes of stuff, I say, than I can ever even look at seriously again. And, trust me, no one wants it after  I’m gone.

        C. Improve your logistics. For all the businesses you patronize, make a list of  phone numbers, hours of operation, web addresses and so forth. Run a Google or other directory app  and print the map with directions to and from your house. Visit your nearby Senior Center and get connected with personnel, services, activities, and so on. Join a Parkinson’s support group and attend the meetings to gain information, see how your fellow sufferers live, share solutions.

        D. Plan for the day when you will be gone. In other words, take care of all the steps needed so that when you do go, your surviving relatives and friends will find the process straightforward and with as little stress as possible. Here are just a few ideas: (a) People who have a will, or better a living trust, find the transition from grantor to beneficiary much easier.(b) Decide who will get what personal property and include the list in your documents. (Two or three people fighting over  your car and claiming that you  told them it was theirs can spoil things.)  (c) Put together in a safe place all the documents of value (deeds, licenses, permits, tax receipts, income taxes back 10 years, assessments, grant deeds, marriage licenses, birth certificates, passports, etc. (Extra Hint: All these valuable documents should be kept in a “go bag,” that, should an out-of-control-fire and an earthquake, and an asteroid, and a dam break, and a riot all occur at the same time, you can  just grab the bag and zoom away to safety.)

        E. Think about your future. Are you planning on going to  heaven? Whatever your thoughts, you probably should invest some serious time into examining your spiritual state. Eternity is a long time, so it would enable you to “live your best life”–even with Parkinson’s–if you  could feel confident in  your ultimate future. And if you could be confident that you will live forever in  heaven, your suffering in this life from the effects of Parkinson’s would seem almost trivial.

        Check these out: Watch the Chosen TV series (on YouTube). Read John 11:25.

        These two posts cover what helps me live my best life with PD.

    • #22858
      Alan M
      Participant

      WOW — how does anyone follow Robert?  Amazing posts Robert!  I can tell you were once a college professor.  Can I use some of this wisdom in my therapy room — with clients who struggle with just about anything?  No doubt they will benefit whether they are a PwP or not.

      Thanks again, bro’.  Alan

      • This reply was modified 6 months ago by Alan M. Reason: typo and additional thought
      • #22866
        Robert Harris
        Participant

        Alan:

        You are very welcome to use my posts in  your work. I have also written a partial book, The Parkinson’s Book, which is on my Web site. I’m not sure if I can put the URL in a post, but I’ll find out.

        Thanks,

        Bob (aka Robert)

         

        • #22868
          Mary Beth Skylis
          Moderator

          Robert – you should be able to share that URL. But it might go through a brief hold while we moderate it.

    • #22860
      Alan M
      Participant

      Oh — what the hell — here goes!  I have my therapist hat on for this post.

      I might be tempted to title these ramblings…. LET IT ALL OUT — DEALING WITH REPRESSED EMOTION

      I’ve discovered that people with repressed emotions often have trouble naming and understanding their emotional experiences. This can make it tough to describe how we feel to others, of course, but it also makes it difficult to recognize when certain aspects of our life aren’t serving our needs.

      One might:

      • regularly feel numb (how I felt upon my neurologist giving me the PD diagnosis)
      • feel nervous, low, or stressed a lot of the time, even if we aren’t sure why
      • have a tendency to forget things
      • feel cheerful and calm most of the time because we never let our thoughts linger on anything significant or upsetting
      • feel distressed or irritated when someone asks us “what is it like to be a PwP?”

      If we have a hard time expressing our truest feelings, our emotions can build up until they eventually explode, sometimes in response to very small triggers. This  reactivity often contributes to problems in our interpersonal relationships.  For example, we might notice that:

      • we go along with situations instead of expressing what we really want or need.
      • we’re tempted to use substances, TV, social media, or other activities to help avoid feelings you don’t want to explore.
      • it is temping to spend most of our time with other people to avoid being alone.  Or visa-versa, frequently retreating into our “man cave” — for example, burying ourselves in activities like work or into the sacred space we call “ours”.
      • we may exhibit passive-aggressive behaviors to deal with situations that upset us.  According to EFT theory, people who have a hard time accessing and understanding their feelings typically also struggle to enjoy meaningful relationships with others.

       Bottom line

      It’s natural to want to avoid feeling bad. Plenty of people feel at least a little afraid of confronting deep, intense emotions, especially those they link to unpleasant or unwanted health experiences like a progressively debilitating disease.  While it may sound a little counterintuitive, learning to embrace  negative feelings can actually help us to improve emotional well-being over time.

      Getting more comfortable with our emotions, even the ones that don’t feel so crash hot, can help us navigate the challenges of life more successfully — while also improving our relationship with self and anyone else we care about.

      So sayeth one, so sayeth all???

      • This reply was modified 6 months ago by Alan M.
    • #22874
      Patricia Conner
      Participant

      i just dance to rod stewart and study spanish, sweimm and wasl with a walker.  , i.e. things i never had time to do.  it is not only lowers the  pain but nonsense dancing works.  I am French .    Older countries never had dopamine but knew one thing:  keep them dancing and give give AS LITTLE MEDICINE AS POSSIBLE.  FOOD was all we had and certain foods are better than others.    We still keep to that idea and avoid the deep rays.  Food, wine, people around them works.

      MOVE :   we knew to keep them outside , so out went the sicked and danced. It is a nonsense dance but makes you move. The mongolians, Russians, Greek had very little of the “shaking disease as they danced AND SPEAK USING HANDS AND MOVEMENTS.   .

      b  do things with Intent.  They knew that to verbally  keep talking , thinking and laughing helped and helped swallowing. so we as kids jobs  would be to talk to them about everything.  It just worked and we had fun. .

      i read the new finding but i just think, how will this help me live with it.   I think we are over giving massive medicine, .    we in France can not make them all happy  but that is a problem that is not Parkinson only.  But we keep them active and physically and mentally which come from past that had only thosetools.  the younger countries like to do research so it is a goodcombination.

      but the above i also is true for many problems and sickness.  We feel that people actually die faster of lonelyness.   Having Parkinson is no treat for me but Cancer or others are worse.

      patricia conner

    • #22917
      John Citron
      Participant

      I focus on things I like to do and don’t dwell on the PD. Like everyone else I went through the shock, denial, acceptance path. After a period of feeling sorry for myself, I then realized there ain’t much I can do about it, or other things I can’t control.

      I’m not avoiding the fact that I have it, it’s there, it bothers me as it rears up its nasty head and gets me with spasms, stupid twitches, falls, bumping into things, and the annoying non-motor symptoms, but I don’t sit in the corner and cry about it.

      Now, I do what’s within my realm such as taking my medication on a strict schedule, eating right, exercising, staying positive and above all, avoiding as much stress as I can. I also have a bunch of hobbies I enjoy with three at the top of my list I can indulge in the most.

      I also keep my sense of humor. Without that, we have nothing and its humor that keeps us going as we find a bit of irony or a pun in our life. Recently, I started having some cognitive and executive function issues and with that my neurologist and I were talking about various aspects. When she finished, I piped up and said, “With executive function issues that means I must qualify for upper management in the company I used to work for.” We both had a good chuckle on that one.

       

    • #22919
      Patricia Conner
      Participant

      I found Rod Stewart at a christmas program on you tube.  it was one of his old songs and i started dancing while sitting on a chair.  i work out swimming three times a week and do voice excercises and study  spanish.  .  But this dancing made me feel good for hours and i then go out, i could walk better.  So just being able to do what I wanted and wildly  made me feel free from the PD chain.  small thing but it worked.

       

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