What’s It Like Having Parkinson’s?

What’s It Like Having Parkinson’s?

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On a recent conference call with some of the other official bloggers for next year’s World Parkinson Congress, we briefly discussed how to simulate Parkinson’s disease for people who don’t have PD.  Here are some ideas that were mentioned in the conference call and subsequent emails, plus a few of my own.

What’s It Like Having Parkinson’s?

  • Wear a leg weight on one leg.
  • On the same leg, also wear a slipper that is 4-5 sizes too big. This will help you to “drag a leg/foot.”
  • Every two hours take a break and find a bathroom. Quickly, within one minute.  This is what bladder urgency is like.
  • When you wake up in the morning, walk backwards for the first 45 minutes until your meds kick in.
  • Simulate taking meds every three hours, then miss a dosage. To simulate freezing, walk backwards again, or crawl, until the missed dosage kicks in.
  • When the phone rings, simulate a freezing spell. Don’t pick up your feet to answer it; instead, drop to your hands and knees to try to crawl to the phone in time.
  • Do not carry a glass filled with liquid because your tremor will make you spill it. Alternatively, try to drink from a full martini glass as a friend gently shakes your arm.  Note:  Don’t waste a good martini doing this!
  • Get a leather belt and a cheap serrated plastic knife like you’d use on a picnic. Try cutting the belt with the knife.  This will simulate cutting meat.
  • Hold a cell phone in your “affected hand” while a friend gently shakes your arm as you listen and speak to the person you’re calling.
  • Hold a cell phone and try typing a text message with your lame hand while a friend gently shakes your arm.
  • To experience dyskinesia, move your torso right and left for 15 minutes without stopping.
  • At a crosswalk, wait through three lights before you cross the street.
  • On one hand wear a thick rubber glove like you’d use for washing dishes. Try picking out 39 cents from a handful of change.  Then try to remove your driver’s license and/or credit card from your wallet.
  • Try to type or text while wearing the same thick rubber glove.
  • The next time you attend a cocktail party, wear a 5-lb. or 10-lb. wrist weight. Then hold your glass in that hand as you stand and socialize, trying to keep the glass level and at waist height or higher.
  • Stand up, spin around until you’re dizzy, then try to walk in a straight line, the heel of one foot always coming down just in front of the other foot’s toe.
  • If you’re right handed, unload the dishwasher with just your left hand while your right arm hangs listlessly by your side.  (If you’re left handed, unload with your right.)
  • If you’re right handed and use a computer mouse, move the mouse to the left side of the computer and manipulate it with your left hand.
  • If you’re right handed, use just your left hand when you wipe your butt after a bowel movement.
  • Forget twirling spaghetti on a fork.

Special shout out to Jean Burns who provided the bulk of these.

And a big special “Thank You!” to everyone who left a comment below.

About The Author: Bruce

34 Comments

  1. Debbie Flamini
    Reply

    While sitting in a chair with knees bent, lift both legs with feet about 6 inches from the floor. Hold them up there while trying to relax and watch TV.

  2. n. lipp
    Reply

    Tense up all your shoulder, neck and arm muscles and try to eat with utensils.

  3. NANCY
    Reply

    TRY WALKING NORMALLY AFTER HAVING SOMEONE PUT GLUE ON THE BOTTOM OF YOUR SHOES

  4. Harriet marinos
    Reply

    Amazing I thought I was alone.

  5. Stephanie Bruder
    Reply

    Try eating or drinking anything while going down ski moguls on a toboggan while your arms are tied with a bungee cord to the side of your body. And if you want to experience the emotions that go with having Parkinsons, do all of this on an unfamiliar hill with a blindfold on.

  6. Mike Head
    Reply

    I have had park for about three years and your description hits it on the nose . One of my side effects is walking and freezing to a dead stop and trying to figure out what I need to do .
    Also my voice is getting lower in tone. When I talk I have to clear my throat and then talk.

    1. d.j.hill
      Reply

      My former husband had ALS and I read a similar post..its difficult to imagine these symptoms

    2. Anne
      Reply

      Mike,

      What do you do about your freezing? I have it bad. Also my voice is really giving me fits. It is hard for my husband to hear/understand me unless I am right in his face.

      I take 2 sinemets 4 times a day; 1 amantadine 2 times a day; and I take a Mirapex ER once a day. So far nothing is really helping me.

      Anne

      1. bruce.ballard2010@gmail.com
        Reply

        Hi Anne –

        I’m not sure if Mike will step back and answer. In any case, I’m sorry to hear about your difficulties. Is your doctor a movement disorder specialist? They have the most training and expertise in PD, more so than other “regular” neurologists. Perhaps your doctor can refer you to physical therapy for your freezing moments and for your voice issues.

        If you want to read an example of how physical therapy helped a friend of mine’s father, check out my March 7 post, “Enriched Environment”: Article + Anecdote.

        Let’s see if it links here: http://www.parkingsuns.com/2015/03/07/18th-post-enriched-environment-update-article-anecdote/

        Best wishes,

        Bruce

  7. John Lange
    Reply

    This is exactly what people who don’t have Parkinson’s need to experience to get a better understanding of what life is like to have Parkinson’s,
    I get leg cramps & I do the splits where my left leg goes backwards & my right leg goes forward, which I have no control of, I have to wedge my legs between furniture in order to stop my legs tearing me apart, lasts for 1hr, it’s bloody hell let me tell you & the pain just unbearable, we Parkies get a tough old time in life, but we struggle through it to fight another day, God bless all who suffer this horrible condition.

  8. Reply

    I don’t have Parkinson’s, but my daughter does, and sometimes I think I !!!!! Can’t bear it!

    1. Lucille Brown
      Reply

      I understand!! I don’t have Parker’s but my daughter does. I wish it was me, I have lived a full life, so I would be contended to sit and watch tv, read or just take life easy. So Becky Wilburn I know just how you feel.

      1. Madonna
        Reply

        Mothers feel the same everywhere, we wish it was ourselves and not our children, no matter what their age. Pray often.

    2. Jane willis
      Reply

      I have parkinson’s and I often see the pain in my mothers’s eyes when she sees me in great discomfort and struggling to do things. It’s not easy watching loved ones suffer. So let’s all say “thank you” to those around us who wish so much they could take our pain away and make us better.

  9. Chris Jones
    Reply

    These are all good examples of what happens , but no one mentioned what is going on inside that person. Like why they don’t anwser you when younask a question, or just don’t talk to you due to the voice isn’t working today. Communication is hard to make sense and then state it. These are just a few.

    1. Cindy Brown
      Reply

      Try speaking through a garden hose that is stuffed with cotton ,See how many say yOU need to talk louder. can’t hear you. Or how many question you as to “Why do you mumble when you talk?”

  10. Reply

    Walk without bending your knees or while keeping your arms tense on your side. Try this whilt walking on an inclined or a decline.

  11. Reply

    Try walking without bending your knees or swinging your arms up an incline

  12. Joanne milani
    Reply

    I find walking backwards helps when I freeze, which happens all the time. Also if my shoes are on it helps to talked them off or on.

  13. Joanne milani
    Reply

    Take off and on … Forgive my typing I’m a parky

  14. JoAnn
    Reply

    Concentrate really hard and keep repositioning your tremoring foot as you finish off a clients massage with what s/b a slow-relaxing-facial.

  15. Cheryl
    Reply

    Try turning over in bed without arms.

  16. Bob stroshine
    Reply

    Perhaps the best those unaffected can do is to spend quiet, quality time with a sufferer. Perhaps you will find it to be the best part of your day.

  17. Reply

    My husband has PD AND I have helped hundreds of people with PD. To simulate freezing and rigidity and anxiety while you are trying to get dressed to get to a doctor’s appointment, sit on the side of your bed sideways, bent over with one arm hanging. You are tremoring as well as feeling paralyzed. How are you going to put your pants on with a shirt with buttons, and your socks are not going on your feet because you are swollen from the Amantadine you take? Getting dressed can take 30 or more minutes, your pants get on crooked and your shirt is rolled up on your back because you can’t pull it down. You finally realize after all this you have to see immediately. This is just one morning trying to get dressed!

  18. Joy
    Reply

    I really am trying hard to understand. My heart goes out to all of you.

  19. Reply

    And all of that is one third of the problems experienced by patients with Multiple System Atrophy, also known as Parkinsons Plus

    1. Rosie Burrows
      Reply

      I can understand why MSA is called Parkinson’s Plus. It is a terrible illness to have. A very dear friend of mine was mis-diagnosed with Parkinsons, when she did, in fact, have MSA (Muscular System Atropy).

  20. Patricia Hansen
    Reply

    Apart from freezing (which is the worst) Oh yes, and getting dressed and undressed, the latest two goodies is my tongue twisting so that I can’t talk without lisping, and yesterday, my jaw started to move sideways back and forth so that I was grinding my teeth. It’s a real adventure!

    Thank you for exposing PD for what it is!

  21. Lucille Brown
    Reply

    I understand how Becky Wilburn feels. I don’t have Parker’s but my youngest daughter does. It would be easier if it was me that had Parker’s, it wouldn’t hurt as bad. I have had a full life and I am at the age that I think I would be contended to sit and watch tv , read, and just take it easy.

  22. Melissa sharpe
    Reply

    All I can say is God bless you all and I will keep this and you in my prayers…praying for a healing and a medication or a break through with this illness…

  23. Denise
    Reply

    Think about your dominant hand having a Charlie Horse by balling up and locking so tight that the pain shoots up your arm. There is nothing you can do to unlock it. Then just wait through the pain until it unlocks itself. Meanwhile you’re praying you don’t drop the hot pot or your plate or whatever you’re carrying. All the while other symptoms are going on simultaneously.

  24. Anne
    Reply

    Mike,

    What do you do about your freezing? I have it bad. Also my voice is really giving me fits. It is hard for my husband to hear/understand me unless I am right in his face.

    I take 2 sinemets 4 times a day; 1 amantadine 2 times a day; and I take a Mirapex ER once a day. So far nothing is really helping me.

    Anne

  25. Gerrie
    Reply

    I have Parkison for about 6 1/2 years. My biggest problem is Cognitive . I start talking and can’t remember what I was talking about. Another example talking and can’t fine words. Also depression it never gets better. Does anyone have these problems? Thank you.

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