“You Look Great”: The Invisible Symptoms of Parkinson’s

“You Look Great”: The Invisible Symptoms of Parkinson’s

“I see no signs of Parkinson’s.”
“You look better than you did a six months ago.”
“You’re kidding. You have Parkinson’s disease?”

How do I reply?

I have, more or less, fifteen Parkinson’s symptoms of which five are non-motor. The fact that my visible symptoms have not changed much since diagnosis in September 2013 is a blessing. The non-motor skills have gone faster although not easily detected by friends and family.

The symptom puzzle

What does one say or not say to someone with Parkinson’s disease? That exchange is often uncomfortable for both parties. How should the person with Parkinson’s react? He has few visible signs but he knows that things are not as they appear. One feels they are being courteous and the other is in an awkward position. Does he bring up the invisible symptoms? He doesn’t want to tell them about his three hours of sleep last night or that he hasn’t had a bowel movement in four days.

Questions

People know little about Parkinson’s or what they do know is based on flawed or incomplete information. Tremor is what comes to mind first so if one doesn’t have a tremor he is doing fine. How does one even begin to reply? Do they want to know more? Does one want to educate them? Do they want to be educated? How do you explain to them about that shadowy behemoth called non-motor symptoms? Constipation, exhaustion from no sleep, balance issues, etc. all can be factors. None of this is visible to the well-meaning friend.

For the healthy person, it is difficult to relate to someone with a chronic disease that has hidden symptoms. If one can’t show them, it is difficult to understand. They try to do the right thing by saying how great you look. It is hard to feel comfortable with the compliment when you know that there is a slow progression (sight unseen) of the disease.

Answers

The easy answer is to say thank you and change the subject. That probably works best for those you don’t know and for those you don’t see often. Chances are that they will say the same thing the next time you see them.

Closer friends probably want more explanation, but they don’t want to hear chapter and verse. One could say to them, “Yes, I am fortunate to not have visible symptoms but I have others that don’t meet the eye such as insomnia.” A shortened explanation of your situation may be all that is needed.

But then there is the old and dear friend. Tell them as much as they want to hear about your illness. Let them know that there are hidden symptoms, anxiety, mental issues, cognitive change, etc. Lay it out. It will make for a better relationship because of an enhanced understanding of the impact of the disease.

I try to couch my response to YOU LOOK GREAT positively. That is the way I feel emotionally, mentally, and physically. If you feel good it is easier to say, “it is what it is” and move on. That may not always be true but it is today and that’s all I have.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • pammi
    3 days ago

    I get the same thing from other people. You look fine, they say. They can’t see inside me. They have no idea what is going on inside . The pain. The times I can’t walk and have to use my wheelchair. The times when my tremors are so bad I can’t feed myself . I live in an assisted living home, a Medicaid room.
    But, still, strangers look at the outside and say you look great!!

  • cynmathews
    5 months ago

    Hi, Tom. Boy can I relate! With no tremor – only stiffness and bradykinesia that is fairly well controlled with Sinemet – I think a lot of folks cannot understand why I retired from being a nurse practitioner. They could not possibly know that I would almost invariably have to lie down at lunch because I was so orthostatic I was in danger of passing out. They also were never around to see me struggle to type my chart notes at the end of the work day after my noon SInemet had worn off. I tried to keep my patients unaware of what a challenge it was to do their pap smears or even look in their ears when I was fading off into “off” time, or before my lunchtime Sinemet kicked in. At any rate, I totally agree with how you have chosen to manage the problem of “looking so well” when you actually feel pretty crappy. I think a positive attitude and sense of humor are the way to go!

  • nancyjones
    5 months ago

    When I see a handicapped person, my first thought is “I wonder what happened.” I figure that’s what others are thinking when they see me using my cane or walker so I open the conversation with, “I have Parkinson’s and I’m shaky and slow but I don’t hurt. A frequent response is “I’m sorry.” Then I say, “Its not cancer.” I’ve opened the door to conversation letting the other person know I realize things could be worse and it is okay to ask me questions.

  • Hubby
    5 months ago

    I can really relate to the scenario described here.
    What is worse is when someone says ” Get well soon”.
    I try to tell them it is not going to get better. Only worse.
    Stabilisation is the best I can hope for.

  • Jessica.Hall moderator
    5 months ago

    It is totally understandable to feel that way, @hubby. You are not alone in feeling this way. The unfortunate truth is a lot of people, even our loved ones and friends, don’t fully understand what it is to live with a chronic condition. Thank you for adding to the conversation. Wishing you well. Kindly, Jessica-Parkinsonsdisease.net team

  • PaulineWilson51
    5 months ago

    I know what you are going through at least in part. I do have that “Flat Affect”, that blank look on my face, and it embarrasses me when I am among people. I am afraid I look as though I am not interested in the people I am with. I don’t have the tremor all the time. it usually claims me in the evening when my defenses are down.

    But at least I can discuss the lack of expression and the tremors with my doctor & friends. The horrible constipation is unmentionable and as such gets no advice, no treatment. I occasionally allude to it but rarely openly discuss it. And yet constipation can ruin your day(s)!

    Thank you for opening up about the non-motor symptoms of PD. I suspect many of us have some of these same complaints.

  • Tom Sheppard author
    4 months ago

    Thank you for your comments. The “poo” subject is a tough one to discuss but apparently, it is an issue for many of us. I am about to “come clean” so to speak and write about it. I am interested in any tips that might help with this huge but quiet problem

  • chris.hall moderator
    5 months ago

    Thanks for weighing in, @paulinewilson51. Constipation associated with PD is definitely under-recognized, and can be really difficult to talk about. This article offers a few suggestions that I hope will help: https://parkinsonsdisease.net/treatment/nutrition-symptom-reduction/. Take care! – Chris, ParkinsonsDisease.net Team

  • DoloresMarie
    5 months ago

    I forgot I used

  • Dan Glass
    5 months ago

    Good points.

    We also face the “too young for PD” comments, to which I respond, “We’re all too young for PD.”

    Great essay!

  • Tom Sheppard author
    5 months ago

    You are absolutely right about “too young for PD” and your response is spot on. At my age I’m afraid I have never heard the “too young” comment.

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