What Not to Say to Someone with Parkinson’s Disease
Graphic: Jean Mellano
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.
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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.
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Comments
Anne Marie Rogers
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
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
thank you Steven for your comments. Some of these comments come from people with the best of intentions :-(
Shsun
Hi my name is Shaun everyday work skills everyday not so good anymore I fall over about everyday lighthearted everyday so much can't handle it the sun don't work with me much anymore but there are so Manny more .
Hi Shaun, I am so sorry to hear about your struggles. Is there a local PD support group you can join?
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.
Shaun Seaman
Its so hard to understand how to get it undertail .I'm wife frights with me everyday enter motor outer motor I'm 39!just been about 6 months I had this I cry everyday to fright with this .
Hi Shaun, Hang in there. Are there any PD support groups near you?
Mary
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!
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.
Jim Harvey
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.
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.
Joanne
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!
Hi Joanne. Thanks for your comment. The progression can be frightening. My worst symptom is fatigue and it is debilitating. Hang in there...
ann
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
Hi Ann. You are right to call PD a thief, it truly is. And most people have no idea what we deal with on a day to day basis, sometimes hour to hour.
Angie
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”.
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.
Debbie
Hi Jean,
I read today many Of your articles on PD And found a mention of Sweating or Overheating. I never saw the actual article.
I am at a lose for why I am in constant battle with heat. I can dress and by the time I walk into the kitchen I am drenched from head to toe. Sweat from my hair is dripping down my back and I have short hair.
My husband, dear man, continuously tells me it’s not cold. He walks around in a sweater. We live as far south in Florida as possible. LOL. What causes this to happen? Please direct me to any prior discussion on sweating. I was diagnosed 14 years ago.
Hi Debbie I don’t recall writing about sweating. I do notice my symptoms seem to get worse with extreme heat or cold. There is an excellent book by dr. Eric Ahlskog. The new Parkinson’s disease treatment book 2015 edition. He talks about sweating as a subjective Pd symptom that might respond to carbidopa/levodopa.
debbievijeon
Nice article
Columbia Corindia
It's comforting to know that I wasn't imaging all the symptoms that I was experiencing and not alone. I also have a hypothyroid and hashimotos and a lot of the symptoms are similar. I'm glad I found you folks.
welcome to our website. i do think one of the difficult aspects of this disease is that everyone thinks I look fine so therefore, I must be fine. Meanwhile, I feel like crap
Toni Shapiro
Thank you for this article Jean. I think I'll have a T shirt printed with your 8 things not to say and wear it every time I go out. I try not to let these things get to me and try to remember how very little I knew about Parkinson's before my diagnosis but it isn't easy. I shudder to think I could have been one of those people who would say those things.
thank you Toni for your comment. I had a friend who was diagnosed with PD years before me. I could never understand why it took her so long to put on her seat belt. Now I know why. Unless one has PD, I believe it is so difficult for someone to understand what we deal with on a day to day (some times hour to hour) basis. My closest friends have all said some of the things in my article to me. Their intentions were good. All we can do is try to educate.
Judy Hiles
Thank you for your article, it was very informative. Do know if excessive chatter and laughing are another effect of pd?
hi judy
thanks for reading my article. have you spoken to your movement disorder specialist about the excessive chatter and laughing? perhaps that may be related to anxiety which i believe could be a non motor symptom of PD
Aaron Espejo
Hello Jean.
Thank you for your article, it helps me a lot, my mother was diagnosticated with PD many years ago, we try to help her as much as we can, but it's hard, there's no cure and sometimes we feel hopeless, however she's struggling every day, and we want to her to get the surgical treatment the DBS, but here in Perú it's very expensive for us, almost $50'000, I hope we can get that amount of money soon.
Thank you again
aaron, i understand the struggles, every day seems like a battle at times. wishing you and your family strength and peace
Susan
Hi Jean -
Thank you for this article! I Was searching Parkinsonism and I happened to stumble upon your article! My husband was diagnosed with Parkinsonism approximately one year and I feel horrible because I would always yell at him to stop shuffling and always told him to walk upright! I mentioned his slowness and his slurring to his cardiologist and was told to take him to a neurologist! To make a Long story short, I started researching his condition and all of his symptoms pointed to Parkinson’s! He is now on a dopamine medication but his gait and back seems to be an everyday thing! Your article helps me to see things differently because our children thinks that he is lazy and doesn’t want to exercise, etc! Sometimes I also thinks he wants attention so he acts out and is mean but maybe it’s all the Parkinsonism!! Thank you for this eye-opener!!
hi susan, thanks for your comment. i can teel you first hand as someone with parkinson's , how frustrating it can be. people sometimes look at me (even my doctors) and say i look fine, but, in reality i feel terrible. i always say we all need to walk a mile in someone else' s shoes...
Ron Gorman
Hi Jean
I was recently diagnosed with PD. I am trying to learn all I can so I will know what to expect. Can you recommend any books or other materials that would be helpful?
My heart goes out to those whose comments I have been reading.
Thank you Jean for being a friend to so many people.
Ron Gorman
Hi Ron I am sorry for your diagnosis. I use the following book as my pd bible, although it was written in 2015, so much of this book is still relavent.
https://www.amazon.com/New-Parkinsons-Disease-Treatment-Book/dp/0190231866/ref=nodl_
Good luck on youthful pd journey and the best advice I can offer and what has worked for me in terms of slowing progression and easing symptoms is to keep moving and exercise (with doctors blessing of course
Adrienne Richter
My father was diagnosed with Parkinsons about a year ago and I am struggling to find a way to accept that I will lose him. I have been researching treatments for PD since he was diagnosed and ended up getting him to do the stem cell treatment. He said that it was amazing how much it helped him as far as the daily pain he was in. We try to always be positive about as much as we can. I will never know exactly what he's feeling and experiencing and it breaks my heart to know I can't make it better for him. He's always been the kind of person that could do anything he put his mind to but now that his PD has taken over he has had to give up so many things he loved to do. Riding his motorcycle, playing the guitar, singing... I hate that he has had to lose so much and I am terrified at facing life without him... I know it weighs heavy on him as well...I never stop hoping that there will soon be a treatment that cures PD.
Adrienne,
Although Parkinson’s is a disease of loss, people do not die of Parkinson’s. I too have lost the ability to do things that I loved like dancing and cycling. Even if I didn’t hsve Parkinson's, age probably would have affected my ability to continue to do the things I loved at the level I used to. Now, there are other things I do that I didn’t do before like writing. I also take Rock Steady Boxing classes (rocksteadyboxing.org to find a location near you) which is a great way to stay in shape and have the camaraderie of others with Parkinson’s . Encourage your Dad to move, exercise , walk. Find activities you can do together that you may have not been able to do in the past. I believe exercise is the best medicine for us. Your father is lucky to have you in his life. I wish you both well...
janet
My BF has Parkinson's and when he says he doesn't want to see me because he is feeling bad I've been taking it personally like "not tonight dear I have a headache". I've been seeing it as an excuse to not get together and wonder if he is trying to break up with me. Your article has helped me tremendously to understand and have patience.
Janet, I am happy to hear my article helped you better understand what a person with Parkinson's is experiencing. You may appreciate my next article, to be published on 4/6, titled : "When I Decline Your Invitation, Remember, It's Not You, It's Me"
Anne-Marie Oliva
How to deal with your husband Parkinson’s.? My husband has had it for almost 9 years and is 88. Since May has been in hospital 5 times. In rehab twice. Cannot take care of him at home needs 24 h care. Until May he was functioning pretty well. Now dementia.
Anne-Marie, you have a very difficult job as a caregiver for a loved one with PD, There are support groups for caregivers; perhaps your local hospital. I am so sorry for both you and your husband. May you find peace.
Beverly Craft
When my husband was diagnosed in 2017 all we heard is that Parkinson's wont be the cause of death. Which at the time seemed comforting. But in the 4 years we have walked with this I am amazed and rarely find anyone who really posts the awfulness and the truth of this disease and the effects it has on the whole family unit. The more I research I learn they really don't anything about this disease except it is progressive and everyone's path is so different and unpredictable. Things like having surgery can be horrible for someone with Parkinsons - the reactions to the medications or getting off your regular routine of taking your daily meds can send you into a different place like you have aged 10 years. The hardest part for me has been the isolation socially - like old friends not calling or asking how you are cause they really don't want to know. Friends and family feel awkward and don't call or visit because they can't understand you when you are talking - they quit calling and inviting and you are left with someone who is a stranger watching them struggle over the minor of things, losing their independence, losing their memory and you are left with everything on your shoulders - because you no longer have a partner.
Beverly, being a caregiver of a loved one with PD must be so difficult. There is so much truth in your words and I completely understand what you are going through. Mty you and your husband find peace.
wolf
4. ‘I have the same problem.’ (or 'it's normal as we get older')
i'm 54 and my 80 year old dad runs circles around me. since 2006 i knew i had gradual onset 'wonky nerve' issues from balance to breathing to joint pain, from hot-cold sensitivities to wiped out exercising, and the times i did mention obvious oddities to dad, he always said these two things trying to 'downgrade it' to help 'shake it off' and not focus or worry about it, or he's clueless (and can't help make everything about himself). so far, since diagnosis, it hasnt come up. if it did, i'd just whisper or bark 'Parkinsons'. that's the simplicity of having it validated by MDs.
wolf
and i had to edit in an extra sentence here:
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. As it is I have dozens of symptoms I struggle with, but grin and bear it as much as I can to live. At times, Parkinson’s feels like the sword of Damocles hanging over my head.
Wolf, thank you for your comments. You are spot on!!
sylvia wineera
Hi Everyone thank you for all your comments much appreciated I have the problem of spaciol awareness does
anyone have any ideas to help with this when will the doctors do more research into parkinsons mine seems to
think it is all in my head if only
Sylvia, it seems like doctors/researches are finding new symptoms that we werent aware of previously that most likely do not affect all of us. i know i am more claustrophobic now and i find it difficult to maneuver in tight spaces. this could be because of pd, my balance is failing and i also have anxiety which i didnt have before pd. you might want to consider getting a second opinion and bring a journal where you have documented when you take your meds and when and what symtoms you are having.
Joan Johnston
My youngest brother was diagnosed with Parkinson’s at the age of 57 , he has gone through so much since then , his wife left him and took part of his retirement, he is still trying to work at a very physical job that he just is not able to do but he has no choice, he has filed for disability and of course they are dragging their feet on it , if it wasn’t for his good friends that he works with carrying his weight he would no longer have a job, which would then render him homeless. It breaks my heart for him he gets so depressed. I don’t know what to say to him to lift his spirit.
Joan, I think the care and concern you show regarding your bother's situation may help him alot. It sounds like he has also has some good friends. Because of you and his friends, he probably does not feel so alone. Hopefully he can draw strength from that, If you didnt know already, depression could be a non motor symptom of PD. Has your brother spoken to his neurologist about this? https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression
Joan
Yes he takes a medication for depression, but sometimes even that doesn’t help, he is in so much pain with his back, that he can hardly walk anymore and then he also has a knee he needs replaced but can’t afford to be off work long enough to have that done ,I try to help all I can , but I’m getting older myself and I also have an older brother with health issues I have to help also. It would take a lot of pressure off him if he gets his disability
Joan you are doing the best you can. make sure you carve out some "me" time for yourself. It sounds like you have a lot on your plate. Having a role as a caregiver must be so difficult, especially when it is for a loved one .You are no good to your brothers if you are not healthy. I also suffer from depression, apatthy and lack of motivation. All we can do is take it a day at a time and not dwell on what might happen in the future. Easier said than done. I hope your brother is abls to cut through the red tape and get disability benefits. It is so difficult because many of the symptoms of PD are not visible, yet they are no less disturbing than tremors
Julie
I have friends who are living with Parkinson’s right now. I want to help my friend who is caregiving her husband by letting her get out of the house and do some things for herself. I have offered to sit with her husband while she is gone and I am wondering how best to do that. I don’t know if I should bring up conversations of past trips that they have taken or if I should suggest we watch a movie he does not talk. We do fine when I come down and they’re both together and I can tell he understands by his head and motions what we are talking about or sometimes he will point. I would appreciate suggestions.
Stephen Prohm
Quality of life query. My mother is now 89 and has managed her PD for approx 5 yrs. Her quality of life has deteriorated due to her symptoms but also due to the many unfamiliar carers entering her house as she lives alone. She values her privacy and appreciates her solitude. Having up to a dozen people night and day caring/supporting is very difficult for her. I live four hours away and managing/coordinating appropriate care is difficult/challenging. My question though amongst this esteemed group is related to quality of life. Appreciating what determines mum's quality of life will be different for each individual I'm interested in other perspectives because soon I may have to make that judgement. Up till recently mum's been well enough to make her own decisions but that time is reaching an end as confusion/dementia takes it's ugly hold.