What Not to Say to Someone with Parkinson’s Disease

What Not to Say to Someone with Parkinson’s Disease

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can Be mindful of how you speak to someone with Parkinson’s.

  

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

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A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.”Disha Patani

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.
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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.

14 comments

  1. Anne Marie Rogers says:

    Thank you for this article. I am 56 (single female) and I don’t look like I have PD – people tell me, and I have felt dis ease about this, and you explain why. It worries me too, as I feel that people therefore have higher expectations of me than if I DID look like I had it. And yes – I worry about the getting sicker and what the future entails. I know it doesn’t help in anyway to think that way, but it’s the bold truth, and it hangs over me like a black cloud.

    • Steven says:

      I agree the article was on point! Well said! I try to believe that as cruel as this disease can be or will get we must always try to find the positive side of things I never stop hoping perhaps we might be different! I am also 56 years old at least for a couple of weeks.LOL. I am married with three children but it is as if I am alone! Dad you are so slow! Can you move faster! Just to name a few. Not what you would expect from your own family. I’m new to the group and happy to know that I’m not alone. I don’t mean that in a selfish way. Steven

    • Jean Mellano says:

      Anne Marie, thank you for your comments. We are only human, try as I might, my thoughts sometimes drift to my future, but I know I cant stay there too long as it serves no purpose for me.

  2. Mary says:

    I was searching the internet to see if there is a connection between sweating and Parkinson’s Disease. Then I found this wonderful column! Thank you for validating what I am feeling. I too am shaky and weak many days, but look “wonderful”. I easily overheat. I too am incontinent. Does anyone get nauseated if they do too much? Sometimes I just feel like I am getting the flu if I overdo it. Thank you so much for being here!

    • Jean Mellano says:

      Thank you for your comments and kind words Mary. The heat and humidity do a number on me. Sometimes I notice my fatigue is very bad after a workout. I attribute it to using whatever dopamine stores I have ( whether from meds or if I can still produce during rest) was used to get me through the workout. My neurologist agrees and told me to cut back on my exercise. As it is with PD, some days are better than others. I have found when I get nausea, it is related to timing of meds and eating. I try to drink a lot of water with my meds and inhale peppermint essential oil to get relief from the nausea.

  3. Jim Harvey says:

    Great article. I appreciated the discussion of PD symptoms. I was diagnosed 5 years ago and am fortunate to have mild symptoms except for fatigue and insomnia. In some ways I have simply accepted that death is coming. I am grateful that I had 65 pretty healthy years (I am now 72). I would like to “get my affairs in order” but find that a lack of energy prohibits getting much done. While I’m physically able to move at a fairly normal pace (2.8 mph on the treadmill) I often feel like I am moving through the day in slow-motion like a zombie.

    The line in the article that I especially agree with is: “Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.” Personally I would like the option of assisted suicide if I lose my ability to live independently. I would rather die too soon that live to long with a poor quality of life. I have no fear of death. To me death is simply going to sleep and not waking up.

    • Jean Mellano says:

      Hi Jim
      Thanks for your comments. I feel as you do but figure I still haven’t fulfilled my purpose here on earth (whatever thAt might be). Depression is a symptom of PD and I know I am dealing with that. The sense of hopelessness can be overwhelming at times. I hope you can find joy and peace.

  4. Joanne says:

    Thank you I was diagnosed at 50 & I am now 61 I am told that I have been lucky with slow progress, fatigue bradykensia loss of balance neuropathy dyskensia are all there and are getting more prominent, I find fatigue the hardest to deal with it just comes from nowhere and can be relentless, most days I just take a deep breath and keep going but it’s getting harder to say I’m not looking forward to the next 10 years is an understatement!

  5. ann says:

    Oh how brave you are and how awful it is to field and deal with the uninformed or misinformed.Films and the media have played their part in stereotyping Parkinson’s as the shakes and tremors.Parkinson’s is a thief that steals energy and life often more so in the darkest hours of the night when pain stalks and leaves the victim alone and isolated

  6. Angie says:

    Thos list is so applicable to my PD aggravating comments. But, Oh My Gosh…number 8 is huge for me. HUGE!! I am 48 and my disease is progressing quite quickly. This comment makes my head spin. “Well, at least you aren’t dying”. They have no clue what it is like. My body may not be dead but my brain feels like it is when I can’t remember my address, simple words that stutter out of mouth. When my tremors during OFF periods are so hard I don’t know how I have a tooth left in my mouth. When my legs can’t get the message from my brain on how to walk and keep from falling…a broken leg is painful proof of this disease. The inability to sleep more than two hours every night…the going in to a room and your husband coming in 5 minutes later only to discover you in the same spot, staring…wondering what just happened. The list goes on. And on. And on.

    But, thank God “at least I’m not dying”.

    • Jean Mellano says:

      hi angie, i find it is helpful to spend time with others who have PD. In my rock steady boxing class, we all have PD and we all understand each other and we commiserate about the dumb things people (including our doctors) say.

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