It can be difficult knowing how to respond to someone who has Parkinson’s disease (PD). Trying to find one sentence that expresses your concern, compassion and your desire to help can be as difficult as hugging a greased pig. Sometimes our best intentions are taken out of context and we can sound insensitive. So instead of writing about what to say to someone who has PD, I decided to put another coat of butter on the swine and let it loose. Here are 12 things NOT to say to someone with Parkinson’s…
1. “My grandpa had Parkinson’s and once they gave him medication, he’s just fine.”
-As I have described in an earlier blog “Not your grandfather’s disease”, the overgeneralization that Parkinson’s only impacts elderly people is common today. Just because your grandfather had this neurological disorder and was able to control it with medication, doesn’t mean that everyone will have the same outcome. We each have a body that is unique to us in the way it manifests symptoms and how we metabolize the medications.
2.“You have Parkinson’s disease? But you don’t have a tremor.”
-Each person will experience Parkinson’s in a distinct way; some may have a tremor, others might have rigidity. We are kind of like snowflakes… no two Parkies are alike. Or maybe you’re a fashionable and chic Parkie, you could see it as we all have own pair of designer jeans that we love to wear. Although they may look similar, we each wear our jeans differently.
3. “With medical technology nowadays, I am sure they will find a cure within your lifetime.”
-This is a hope that many of us Parkies have, but being realistic offers the brutal honest truth. We might find a cure someday, but that day has not come, so to brush off our fears with an unknown future can be frustrating.
4. “You look like you are having a good day, your Parkinson’s must be getting better.”
-Three words, “Degenerative Neurological Disease”. Parkinson’s is a progressive chronic illness that will worsen with time. Just because a Parkie appears to be having a good day with little symptoms, doesn’t mean that their PD is getting better. There is no cure, no way to heal from this illness, and keep in mind that even hour to hour a Parkie may appear better or worse.
5. “You have trouble multitasking? I can’t multitask either, maybe I have Parkinson’s”.
-You’re basically saying to a Parkie, who feels like they have gone crazy, “What you’re experiencing is not a big deal, and maybe you’re overacting.”
6. “God can’t give us anything we can’t handle.”
-Religion and Spirituality is a very personal experience, try not to push your values on someone else. Everyone has their own coping mechanism when faced with diversity… let them find what works for their situation.
7. “Those medications can’t be good for your body, have you checked into a holistic approach? It might be your diet.”
-Oh! If I only I’d known it was a milk allergy that caused my Parkinson’s… riggggggght…
8. “Well Parkinson’s doesn’t kill you, so that’s good.”
-Yes, Parkinson’s does not “kill you”, but it’s the complications of the disease that can. Caution: attempting to help someone see that it could always be worse, may result in a Parkie throwing a blunt object at your head… don’t say that I didn’t warn you.
9. “My father had Parkinson’s disease, I know exactly what you are going through.”
-Ummm, I’m a 30-something woman. Even if I found my identical twin and we both had Parkinson’s at the same age, we would have different experiences. We would eat different foods, live in different environments, and cope with our illness differently.
10. “I don’t know what I would do if I got Parkinson’s disease, I would probably give up on life… You’re so strong.”
-Such comments can suggest that Parkinson’s is a death sentence. Although you mean well by complimenting the strength that your loved one is displaying, it can be interpreted negatively, it sends a message of hopelessness. Nobody wants to hang around Debbie Downer.
11. “You’re the Perky Parkie, you can’t be sad.”
-It’s my party and I will cry if I want to! Just because it might be difficult to see the people you love going through emotional and physical pain, doesn’t give you the right to dictate how they should feel. Most days I am ball of energy, but then there are times that might be a little dark and that’s ok.
12. “Don’t let Parkinson’s define your life.”
-A person is ultimately responsible for their path in life and they determine what’s important to them. I am not just a person with Parkinson’s disease and although it doesn’t define me, it is a huge part of who I am.
I know what you are saying….”Ok, I get the greased pig thing…. but what should I say to someone with Parkinson’s disease?” The answer lies within my blog. With each of us being little snowflakes, our disease is unique to only us. That means that we will all need support in different ways. Don’t believe that a someone will cope the exact same way that you would. We have lost so much control in our lives, we don’t want someone dictating how we should cope with PD. Take the time to have a conversation with your loved one and meet them where they’re at. Let THEM tell you what will be most helpful when faced with the challenges of Parkinson’s disease.
Its been awhile since I have posted any comment but …..
I think that for the un-educated and ill-informed, people who hear about someone having cancer is like a Judge handing down a death sentence. These same folks believe that other diseases the Judge is handing down a Life Sentence without Parole.
They do not associate diseases (like Parkinson, as being the same as cancer.
It is one of our job as supporters of people with Parkinson Disease to better educate these ill-informed but well intentioned people about the disease and its impact on the patient and their families.
David, it’s nice to hear from you! Yes, I agree with you 100%. A large part is educating people about Parkinson’s. That has been my goal, educate at least one person a day. It’s a small task, but it adds up!
I was diagnosed with Parkinson March 2017 and the worst thing I have heard is “At least it’s not cancer:. What?!@#$#@ People sometimes have good intentions but end us being clueless.
Lisa, it’s so true! Sometimes people don’t think about what they’re really saying!
My comment is not to be called a parkie.bloody hate it .
Is there some other term that you prefer?
It’s a horrible disease, I cannot even begin to think what it must be like to live with this disease. All I can say is I love my cousin who has this disease, I admire her courage and beauty. She is my hero.
Sending love ❤️ to you and your cousin. Thank you for your comment.
My Mom has heard them too, and now since she is having trouble swallowing and can’t walk or talk they will say well she is 78. I don’t give a shit how old she is! It drives me insane.
That’s horrible! Age doesn’t dictate what kind of care you should receive. Thank you for sharing.
I am afraid I have said some of those things to my husband. #5 & #7 stand out prodomitly. My husband has had the disease for 2 years that we know of along with dementia. He does very well as the only shaking he as had is his right hand. What I didn’t even think about is that shaking is very tiring. A light bulb came on when he told me as I didn’t even realize it. This has been helpful to me and I thank you all.
Sometimes it’s hard to put ourselves into another one’s shoes. Thank you for your comment. Happy to hear that it helped.
That is terrible. I’m sorry you had to hear that. I have Parkinsons. I ‘ m not ready to die now or when I’m 78
Every comment listed I have first hand experience of both from the general public and medical staff!
There are those very special people who instinctively know what to say when to say and how to say it and treat you as a normal human being with feelings ,they are the.people to keep close ,to cherish and help positively without a fuss.Im lucky to have a family and a special friend at work whose unconditional help and support keeps important things in focus.
Loved every word you hit it square, my answer to , are you sure you have parkinsons , ? You dont shake, i alternate between shaking my hands around , and looking them in the eye and saying, actually im not sure. , what do u .think I have???;
Greart article.nNice meeting you at WPC.
Parkie, what an an outstanding article! It was nice to meet you at WCP.
Thank you. Happy you liked it.
Thanks Allison. I look forward to your posts. It’s always good to read your words of wisdom. You make a fine ambassador.
Thank you Harold! Happy to hear your enjoy my blog!
Well said, Ally
Thank you Aunt LaLa, I hope your are recovering fast! xoxoxo
Thank you for your funny, relatable and informative articles. Thank you for making me laugh and feel like I’m not the only person with PD. it’s comforting to hear a voice, a person who gets you and what you’re going through.
Rock on ! You’re awesome!!!!
Oh thank you Beth! I’m happy that my blog has brightened your day!
Let’s put a positive spin on this:
1. What we know about Parkinson’s is that it is not the same as it was years ago. There have been leaps and bounds in the diagnosis and treatment of Parkinson’s so it is not the same as we used to think in the past.
2. If you hadn’t told me, I wouldn’t have known you have Parkinson’s. You seem to cope so well, what if anything can I do to help you as you manage your symptoms?
3. “You are so special to me, I hope that they can find a cure in the near future …”
4. “I find you to be amazing …. you have this illness yet you are so full of life and vigor ….”
5. “I don’t know how you do it. You manage it so well …..”
6. “Is it okay if I pray (or chant or ???) for you?”
7. “Have you been able to find the best treatment options for you …. ”
8. **** Can you help me with this one? ******* Test to see if you/anyone actually read this reply. However, I also find it difficult to “spin” this one.
9. “I have had a loved one with similar circumstances, would it be helpful if I did …. for you?
10. You are so strong and “PERKY”? I admire your strength, tenacity, ….. etc.
11. I am here for you. Just let me know what I can do for you.
12. I wouldn’t wish this on anyone. However, I admire your strength and how you are dealing with it. Please let me know if I can help you in any way.
I hope that no one takes these “spins” to be critical of your comments. However, I just wanted to share the other side of the coin and hope that someone can see a different light on the circumstances.
Allison, you make me (and I am sure others as well) smile with your comments. I like to meet and interact with strong people and you are one of the strongest that I know. I have been amazed by you ever since I met you and I have shared your story and books with many facing some adverse circumstances. Somehow, you always find the light at the end of the tunnel.
As always, take care ….
Love your spin! Thank you for encouraging people to look at the other side of these comments.
Ahhh, for #8?? Here’s my spin….. Yes, PD won’t kill me….. According to statistics… I have a much better chance of getting hit by a “stray” bullit as I go through life… and let me tell ya, THAT would just “slay” me.
Like your spin!
Thank you for this guide it means so much my dad has PD
Happy to hear it helped. Your Dad is lucky to have you.
My favorite comment came from a man who copied my walk – a grown man! – and then asked me why I walked like that. I calmly explained to him that I have PD and sometimes my drugs wore off too soon . When that happened, I”d walk differenrly than normal. He looked at me and said “Oh, well you’reure still pretty! anyway!” How angry can you get at someone who calls you “pretty”?!
Wow! I have no words!
I have both PD and generalized Dystonia which regularly interact to effect my speech. I frequently can only “grunt,” sometimes cannot make any sound or can’t make particular sounds/words. So walking in a hallway in our large +55 apartment complex the following events happen …. “Hello.” Excuse me I said hello.” “What?” “Say that again?” Can you speak right?” “What’s wrong with you?” Why can’t you speak (or talk right)? “Have you seen a doctor about that?”
What often works the best in those situations is to say “GRRRRRRRR!!!” and point to my mouth shaking my head no while I walk away. After that, many quietly ask one of my friends’/neighbors about my “craziness.” Sometimes later they apologize or stay away from me. What really confuses them is the times that I can talk quite competently.
Yup, we often change … moment to moment.
My husband has PD, and I appreciate most of your list. Especially # 7!!! To those who feel these are negative and not worded nicely enough – when you have PD or are caring for someone with PD, then you can say that. Otherwise, take it as it was meant – a light-hearted but genuine look at how it feels to receive such comments. Bitter? Maybe – how would you like to be told you have a degenerative neurological disease? Negative? Not really. Unappreciative? Not at all. It’s NOT all about you – it’s about the PWP!
Thank you Perky Parkie!
Thank you for seeing the true meaning of this blog!
I absolutely agree parkinsonism doesn’t define my husband he is Trefor and I love him and he loves me he lives his life…..Amen
Sorry for any illflictions you may have, but everything in this article has a very bitter tone. The message we well intended, but the writing is very off putting with its aggressive and negative tone. If you truly want to communicate your points better, I would recommend more honey and less vinegar. If you’re incapable of that I would recommend not writing at all.
Thank you for your honest comment, whether it be negative or positive, I appreciate the time you took to write it. As you might not seen my blog is meant to be interpreted as humorous, light-hearted and it comes from a caring place. I am sorry if you felt that it had a negative tone, that was not my intention.
Someperson do you have Parkinsosns????? I make jokes about it, MOST people I know with this do…it keeps us from slowly losing our degenerative little minds…To be able one day to walk across the floor in the morning only to CRAWL on the same floor in the evening drives me insane…BITTER??? Honey you don’t know bitter until you see what you could have done 2 months ago you can’t even walk anymore…She is making atwisted statement maybe re read it and understand people are not you…we deal differently but MOST try to just get through the day without collapsing into a heap crying…or worse suicidal…I’ve been both…but mostly I try and have a sense of humor about it…it helps to make the bad taste of this condition easier to take…
Pain and fear go down much better with a spoon full of sugar…. keep that sense of humor. I know it has kept me sane! Thank you for your comment Bonnie!
Thank you for your blog. Last night after hours of research I have determined my mother has parkinsons. I was aware of some subtle memory and behavioral changes last time I was home in May. This time it is more dramatic. She has a chin tremor that is VERY subtle and not always, softer voice, hoarseness, has developed a stoop I’ve the last two years, blank stares and apathy. She’s having some word finding difficulties and some memory changes. She has been a gardener her whole life and uses round up pestic. I am a PA and have worked in medicine for 18 years. I am very confident I am right. My question is – how do I approach her to go for an evaluation? She’s vey independent and strong willed although she’s changing. I know she’ll be resistant. Should I ask her PCP to investigate at an upcoming visit?
Are her symptoms bothering her? If the changes your noticing aren’t impacting her daily activities, it will be difficult to get her to a Neurologist. I would just have a conversation with her and tell her your concerns. Then tell her you would like to take her to the Dr (preferably a Movement Disorder Specialist). If she brushes it off, let her know the door is open if she decides later. Sometimes people are in denial or apathy can play a role. They key is to meet her where she is at, even if that’s what you want for her. Good luck! Keep me up to date.
You are correct. My nurse/sister noticed the basic symptoms in our eldest sister; but it was almost 2 yrs before she agreed to see a neurologist (who misdiagnosed her), then another year before we convinced her to see a movement disorder specialist/neurologist for 2nd opinion. She was correctly diagnosed at that point; put on the correct meds and is doing so much better now. She finally understand the importance of her meds and when to take them routinely instead of sporadically.
So happy to hear that she is finding a routine that works for her!
I talked to my Abbvie rep and she had the following suggestions:
1. Go back to your team and request to have an G.I. x-ray to see if your tube has migrated from the target spot or if you have an obstruction in the tube.
2. You were responsive to Sinemet before starting Duopa?
3. As for people not accepting Duopa, I have not heard of that, as long as you are Levodopa responsive and tube is placed placed correctly.
Good Luck and keep is posted!
I just learned last night that a dear friend of mine has Parkinson’s Disease. Her doctor told her yesterday. The way i see it is that i just need to be available to her. to let her talk, to let her deal with this news, but Not to be the ‘problemsolver’. i realize she needs time right now to absorb this news and doesn’t need me bombarding her with any information i might Think i know about the disease. i know Nothing. thank you all for your comments & advice. You’ve all been very helpful
You’re a great friend for thinking of her feelings instead of reacting to your emotions.
On the other side– I don’t have PD. It seems you are saying no matter what we say your going to be pissed off at us. If we don’t even acknowledge the disease, then we still are insensitive. I’m guessing the only way to deal with it is to avoid the person with illness completely??? Maybe the person with the disease could tell the other person what he or she needs? You can not create a situation that no matter what a person does or doesn’t say or do still be the wrong thing. Most of the comments seemed like the other person was just trying to connect to the person with the disease. They were trying to say the understood or at least was trying to understand. — a connection— someone lets me know I’ve said the wrong thing no matter what I say, I’ll be avoiding them like the plague. If I’m told what makes another happy, I’ll bend over backwards to make their life better
Diane, You are so right! Making a connection is the best anyone can do in this situation. That is just exactly what I hit on in the last paragraph of my blog,
“I know what you are saying….”Ok, I get the greased pig thing…. but what should I say to someone with Parkinson’s disease?” The answer lies within my blog. With each of us as little snowflakes, our disease is unique to only us. That means that we will all need support in different ways. You can’t believe that a person will cope the exact same way that you would. We have lost enough control of our lives; so don’t dictate how we should cope with PD. Take the time to have a conversation with your loved one and meet them where they’re at. Let THEM tell you what will be most helpful when faced with the challenges of Parkinson’s disease.”
You were spot on! You must be an amazing friend to attempt to make a connection to someone with an illness…..they are lucky to have you. It is nice to hear from the other side, thank you for your comment.
I Totally agree with the comment you have made I thought the same. It seemed to me that no matter what you said it wasn’t right. Some of the things I thought were really thoughtful and were only trying to make that person feel better.The person criticizing the persons comments seemed to be extremely negative to me and needed cheering up
FYI, PD, and particularly some of the common related conditions, regularly impairs our ability to talk … even to the point of not being able to talk. Sometimes what comes out is not easily understood, sounds are changed or don’t emerge, wrong words, etc. It is more than a little difficult to explain a complicated situation when you cannot speak effectively. Personally, if you can’t or won’t understand that, it is probably best to “avoid like the plaque.” Or, you could wait and if things improve, simply politely ask and LISTEN.
Love these 12 items. They are so true.
This is great, Allison. Thank you so much. I have my PD and my lovely man has young onset Alzheimer’s. The best of the bad is ” I wonder what you did to attract this to yourselves?” (in a truly concerned voice).
People do say outrageous things, some are just very insensitive or have no idea. Others are trying to be kind. The latter get a pass; the former get avoided.
Ouch! People’s insensitivity is everywhere! Thank your for the comment!
I especially like to be called drunk or stoned when neither is the case, it allows me to go on a rant, be educational , and culminate with the line…If i am going to look drunk or stoned I want to be drunk or stoned.
You are so right!
my wife: “you’re putting it on”
How about: “you look great!” – what, am I supposed to look bad? I have a tremor – not a bad hair day…..
Excellent insights. I will pass this on and take full credit for myself. 😉
I wouldn’t expect any less! Lol!
I resemble that remark.
How about “Do you know Michael J. Fox?” Yeah, we’re real tight because of the Parkinson’s. My husband and I are going to dinner with him and Tracy on Saturday!
Ha!!!! That is so true Pam!!! Thank you for sharing!
Bravo! Well said …
Sort of like someone saying “Your tremors are bad today, did I you take your medications?” Ohhhhh how I hate that! Of course I took my meds and no my DBS stimulator is not turned off. Just a bad day but tomorrow may be better, okay??
Another wonderful post, Allison. Important info for people without PD who mean well but… If you don’t mind, I’d also like to link to it in a future blog post.
Of course Cyndee! Thank you for the comment!
Great post, I will link your post in my next blog post if OK with you. Thanks for all you do.
That would be awesome! Thanks!
Great post! Someone said to me. “Oh now you know what it’s like for the rest of us getting old. I have to wear my reading glasses all the time now.” Similar to #5. #insensitive
Open mouth, insert foot.
Thank you for sharing my blog post. Can you please include that this was from The Perky Parkie Blog. It’s not very clear where you found my post and I don’t want to confuse anyone. Thank you.