I know my friends mean well when they’re encouraging me with their words. In addition to the above comment, I also hear “you’re lucky, it’s not MS” and “there is a cure coming soon”. I look unscathed by Parkinson’s and my motto has been not to complain but these thoughtful comments feel empty, non empathetic and frankly they make me feel alone in this journey. I am so grateful to have found this site where people with Parkinson’s can air their issues. Many of your descriptions of symptoms are exactly what I have felt. Do any of you have a response to outsiders? I would like to express to some degree what I am dealing with and yet, I don’t want to make it sound like I am complaining? I just want to stop the incessant “you’re lucky it’s Parkinson’s and not” : ALS, cancer, MS, Alzheimer’s, etc comments. Or do I have to be the bigger person? People don’t know what to say; they are trying to give me hope and encouragement. Unfortunately, to me, these comments feel dismissive.
How do you deal with the dismissive ‘enco... - Cure Parkinson's
A french women has wrote her story with PD in a novel.
The title of this book would interest your friends. It's called :
" I am not afraid of cancer anymore".
Thanks, I plan on reading this myself. What a perfect title! I appreciate your reply.
Thanks Xenos for mentioning this book. I tried to find it on Amazon and the title is not coming up. Do you know the name of the author?
I think that people probably mean well, some of them care, some of them don't. However they really don't want to hear how you really feel.
I just tell them "I feel great".
Anyway, it makes them feel better.
Those comments are dismissive and anyone who says such things is not a very good friend.
Very good question.
I am now to the point of smiling and biting my tongue.
I also answer How are you with "Fine"
I do not complain or discuss PD with 98%
It has taken a very long time to get to this level and no longer telling them , to F#&% - #%%, (expletive deleted) but my control over reversion is tenuous.
One neighbor told me that his grandfather had Parkinsons, and that he knew the signs and I did not have PD and intimated I was faking it. Expletive was well used in my response that seemed to surprise him.
We are now waving neighbors, he waves, I give him the finger
I so appreciate people that understand. Sometimes I have wanted to burst out every expletive I know. Because I don’t complain, my sister believes the meds I am on have cured me. She laughs because she has heard that gabapentin is a ‘happy pill’. There would be no point in telling her that I am taking it primarily to relieve the odd numbness, tingling and electrical pulses that radiate through my body. And as we all know the meds only take the edge off. There is no magic pill. Unless, I am ill informed; please let me know if there is a magic pill?
Some of the people I love the most seem to hold grudges,,angers from long long ago ~
Gymbag, I commiserate with you on this topic. You will not believe the number of times I've been accused of faking it and quite rudely and unabashedly so.
People have no sympathy, no empathy or genuine concern. These are from the people I know!
Now, I must say that I have gotten a lot of help from total strangers. When people find me struggling, they have rushed to help. I used to travel for work extensively until recently even after diagnosis. I have always been thankful and grateful to get such attend. But I hope that I could get more of the good stuff from friends and family and even work colleagues 😤
I am getting faster with my middle finger salute. I had a similar experience to your neighbor’s response. A ‘good’ friend, an occupational therapist, who is very familiar with Parkinson’s suggested that my resting tremor didn’t rock enough. I didn’t want to have to explain and describe the multitude of other symptoms that I was enduring to convince her that I had been diagnosed correctly.
No Magic pill, no Happy pill
I have an old friend age 73, that has been my best friend since we were both age 6 . Bad times and good times , he was always there, so imperfections are ignored. He does not call before he comes over because I might tell him I am having a bad day. He just appears anyway and we always end up out in a coffee shop or something. He always offers help when he sees I am struggling with a physical task but I decline and only accept his assistance on projects that I pay him an hourly compensation.
True friends are so special and as you know are to be appreciated. One thing about our condition is that perspective shines like a beacon in our path.
That's because it is more comfortable for them to think you are ok, so they don't have an extra thing to worry about. Also it hard for them to understand the taste of PD no matter how much they read about it. You are not the single one experiencing that. It is really frustrating.
Thank you for so clearly explaining what I believe to be so true.
People don’t know what to say. I frequently share this meme with people. It helps me be a better friend to my friends who are grieving, too. images.app.goo.gl/1Txa4kUkK...
Palm, I understand exactly how you feel. In my case I had uterine cancer and after my complete hysterectomy, 3 months later was diagnosed with PD. I’ve heard the comment well , at least you won’t die from Parkinson’s . I just chime in and say you are wrong , a piece of me dies everyday . I’m saddened that I will never be the me I was , however I have come to terms with my reality now. My best friend , who just couldn’t grasp my feelings until she had a life threatening artery issue and the anxiety and wanting to just “feel good” that came along with that . She said ,” I get it now and I’m so sorry”. My husband has always been my rock and try’s to understand and makes light of when my body freezes in place or my face freezes like I’ve had a stroke . He will be the first one to grab my foot and rub it when he sees the dystonia start curling my toes. Until they walk in our shoes they will never completely understand how we feel and sometimes there are no exact words to explain correctly. Take heart in knowing that we all understand you and your feelings and for the most part other people mean well and are kind but just don’t think about their words before they say them . Anytime someone tells me they have a certain ailment I just say , I’m so sorry , how are you feeling. Take care my friend . Karen
Tell them to politely F... off. They have no idea what you’re dealing with.
Hi PS - I genuinely believe that people really don't know what to say in situations like you state. There definitely is a certain "awkwardness" to the response. Having said that, it's hard for me to believe that people haven't seen Michael J Fox twist and turn in an interview to acknowledge that PD is not for the faint of heart. I think your true friends will be supportive when you need them and give you distance when you don't. All the best on your PD journey. You have come to a good place for knowledgeable support.
Kay (caregiver, not PwP)
Thank you for your thoughtful response. I do have many empathetic family and friends that never question what is happening to me. I have felt the awkwardness of trying to think of the right thing to say to ill or grieving friends. The do’s and don’t list posted earlier is a fabulous tool that I plan to look at and refresh myself with, for just those situations. Thanks again.
“ I’m doing well , thank you for asking “, “how are you “?
I smile & turn the focus to them
( most times ) 😜
Someone so dismissive and discounting of something so serious is not really your friend. They don't deserve your attention, loyalty, or emotional giving of yourself into their hands to crush you with; so make that mental separation so that you remove your emotional dependency and trust on them and reserve it for others more empathic and deserving of it, because relationship-loyalty that you have available and bestow on others is a gift that is lost on them. Learn to de-emphasize your reliance and taste for the company of toxic people. You may do this backing off diplomatically but you must make a boundary and do it. You will be so much better off and relieved...you can do so quietly and unobtrusively but you must do so. You will feel better for it and judge yourself to have made a good choice. The void will be filled with others, better ones; you will discover this.
If conflict is uncomfortable for you, you can move the process along more quickly, yet more easily in the end, with the mildly cryptic but definitive comment, "Well, you wouldn't know."
My short mnemonic motto in this: "avoid toxic people." Even if they are family.
Hello, and welcome to this forum! I get that sometimes, too! It is frustrating, when I'm placated by a doctor. I expect understanding, and, instead, get criticized! It's also, upsetting, when I exercise, and am told that I need more exercise. Or, you look perfectly fine, and I don't see any Parkinson symptoms in you, I just know, in this forum, the PWP, are very supportive, and helpful!
I really feel like I have found a place where people truly feel and understand what I am going through. I needed some familiar voices at this point, 4 years into my journey.
Hi, Palm! I am glad you recognize that your friends mean well and are trying to give you hope and encouragement. Unless they have PD, they will never know how you feel and they often won't express their love and concern very eloquently. However flawed they may be, your family and close friends DO care deeply about you and they are vital to maintaining a good quality of life. Forgive their ignorance, accept their good intentions, and enjoy their contributions to your life. 😊
Thanks, I do want to have grace, forgiveness and frankly compassion for their ignorance but, oh man, sometimes it is hard. I will keep your wise words in my heart the next time I see my “friends “.
I don’t talk about it to anyone including my husband who tells me he doesn’t think I have PD , I’m just not fit! (Or sometimes that it’s worse for him than me!).
This is why I like this forum - at least I don’t have to bear it alone.
I am so glad that I found this forum as well. I have needed to hear voices that sound like mine. I don’t feel so alone anymore. Thanks for sharing your story.
Hi Palm Springs, I am in Yuma. I have found that people in general only superficially want to engage a "Parkie" in discussions concerning their Parkinson's. I only refer to it when it interjects itself into a situation and then dismissively announce that it is just my Parkinson's asserting itself. I don't require empathy from them nor lead them down that path. Save your meaningful discussions for people that are of importance to you and you to them. Everyone else will blissfully glide along their way.
They don't worry me personally but if they did I might be tempted to say, "That may be but I am still shipwrecked on a desert island with no hope of rescue"
Glad to meet you PalmSprings. Me? Lately when queried I try to be honest with what I've been feeling. How am I? Sometimes I would rather die than get up out of bed in the morning to face the world.
Oh, I so know how you feel. I am finding getting out of bed such a catch 22, in that if I don’t, I start to feel worse like my body is shrivelling up and yet, I just want to curl up and not face the day. Cheers and I hope you feel half decent today!
Hello Palm Springs, My name is Alix Redmonde... I went to PS High
I felt compelled to message you. I'm the CEO of Parkinson Place in Sarasota FL. We serve a community of more than 1400 members. People living with PD. Everything we do is FREE! to all. Now with COVID-19 we have transitioned almost 60 fitness, dance, voice therapy, art, other classes and special speakers to ZOOM. Your post of people being insensitive struck a chord. Words matter and one of our missions is to make Parkinson's disease a normal part of the every day conversation. People often don't know the right things to say, ask or offer and the hope is to educate. Feel free to reach out to me and I will share this link to our website in case you would like to join us in any classes. parkinsonplace.org/
I will also post for all to see later this week on HealthUnlocked. AR
Wow, thanks so much for reaching out. I really appreciate your offer and will probably take you up on your offer. Thanks
I use a little helper... I have take my daytime C/L on a 4.5 hr cycle starting at 08:00 till 17:00, and wear a Never stop Beeping TIMEX Expedition watch. I have a bad hearing deficit so people around me will ask 'what is that ?' I calmly say I have to take my Parkinson's medication now... I still get a few 'You have Parkinson's?' mostly I say " yes, diagnosed 7 years ago and still here ".
The bleep beeps are a nice seguay to the topic and I can quickly explain what ie C/L does for me.
I also volunteer on the board (Treasurer) of our Child Develop Center for kids that are development challenged. Each year when we get new board members I include the fact that I have Parkinson's and mention the fact that if I go mute as I do not know it is happening, please ask me to speak louder. A fact of life!
Sorry , my dog needs a walk and pestering me grabbing my writing arm.
Live your life as you need.
People may be well meaning but they have no idea what it’s like to live with PD. It is impossible to describe what dopamine depletion feels like, or tremors, or the tendency to freeze up, or the difficulty getting out of a chair. It’s just what I deal with on a daily basis and there’s no use talking about it. My wife is sympathetic but she’s got her own issues she’s dealing with. And it’s also true there are worse things to get. Couple years ago I lost a friend to ALS. And I have a neighbor who is severely disabled from PSP. I try to focus on what I CAN do. This morning I started off with a Chi Gong session, and this evening did an hour of Bagua circle walking. And that’s how I get through the day. One day at a time.
That’s a tough one ... it’s not helpful at all and happens a lot! So what to do ? We try to politely to ignore ...it’s no good alienating people But you want to give them a shake!!
A PD diagnosis IS a death sentence. That it takes time (during which you may well die of something else) doesn't change that. People should lay off the well intentioned cliches.
Everything is a death sentence. We are all walking to the Energy that will dissolve our sense of being separate bodies, just on different paths and at different speeds. For years I focused on PD, but low and behold I recently landed in the hospital with a urinary tract infection, four cracked ribs from a bad fall, cancer recurrence and although PD may have contributed to the fall, the UTI left untreated could have ended things a lot sooner. and not being able to breathe deep can lead to pneumonia. Recovering well but more aware than ever that I need to have my follow up appointments, scans, report problems to the doctor but at the same time not bore my friends with the gory details. Friends who don’t get it; it’s always about their own fears.
I would just let them know that if they were in your shoes maybe they wouldn't be so cavalier with those dismissive comments those people are not FRIENDS SO make sure that they understand that.
Nice pic thanks for sharing