Do You Know Someone Who is Pretending to Have PD?
This is for all those people with Parkinson’s disease who can’t seem to make others understand what’s going on in the mind of a PD patient.
I’ve heard of people with PD who actually live with others who don’t believe they have PD. You can call it denial. You can call it ignorance. You can call it whatever you want, but who in their right mind would want to pretend to have Parkinson’s disease?
Who would, in their right mind want to:
- Pretend to fall?
- Pretend to stutter?
- Pretend to drool (how attractive)?
- Pretend to whisper so that every other word someone says is: “WHAT?”
- Pretend not to smell the fragrance of a rose?
- Pretend to shake so that every eye is on you?
- Pretend to look mad all the time?
Pay me thousands of dollars to pretend I have PD in a movie — make that millions — and I might consider it. But to pretend, day to day, to have a debilitating disease? Give me a break. And, wouldn’t someone who’s pretending rather spend thousands of dollars on a vacation, rather than for doctor appointments and drugs you’d rather not have to swallow three or more times a day?
Here is the latest comment I’ve heard one person say to a frie nd (quite seriously and sarcastically): “What is wrong with you? It’s like something’s wrong with your brain.”
All I can say is, “Gee … Ya think?”
Every morning we PD’ers wake up and gather the strength to get out of bed. We don’t just pop up like a toaster tart and stretch like Jane Fonda or Jillian Michaels. Nope. We push ourselves up — our stiff, sore selves — and we don’t even consider stretching for fear of our muscles cramping up just by thinking of performing such a task.
We shuffle to the bathroom like a weighted penguin and thank God for the person who invented elastic waistbands so we don’t have to fumble with buttons or zippers or strings. We shower, washing the same frame as always, but taking 10 times as long as it once did not so long ago. We brush our teeth with electric toothbrushes so we don’t tear our gums apart should the tremors take over and attempt to complete this task for us. We dress, again taking 10 times as long as it once did, and sometimes (often for some) we need assistance, very aware of what being humbled can mean.
If we haven’t already downed our morning’s medicinal cocktail, we choose now. The number of pills varies, however, depending on who you are and the doctor you have and what’s going on with your body. Me? Nine for breakfast, five for lunch, five for supper and three for bedtime. Mmm, mmm good. And did I mention the side effects that the medicines cause, or can cause? You name it. The possibilities are endless.
You go on with your day. Now, here it must be stressed that every PD patient’s day is different, as one person may be having a good “on” day (or at least part of one), with their meds working great, while another is having an “off” day, with their meds in need of adjustment, or perhaps just not working too well anymore. You act crazy where once you may have been seen as calm and quiet, at least in public.
Perhaps it is the PD. Maybe it’s the realization that today, this day, is the time to enjoy life and laugh and not care what others are thinking while you act — crazy.
I’ve heard it said that with Alzheimer’s, the patient doesn’t recognize family or friends after a while, whereas with Parkinson’s disease, family and friends may not recognize the patient. They act differently. They think differently.
Maybe we’re just trying to confuse those we love to see if they notice. I hardly think this is the case. But, you know, after all, something is wrong with our brains, so the transformation is legitimate and warranted, right?
If you know someone who says they have PD and you may think they are pretending, please think again. They’d much rather pretend to be Cinderella or Prince Charming and live happily ever after.
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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
Sherryl Klingelhofer
so glad you wrote this, Sherri!
Sherri Woodbridge
Thank you, Sherryl.
Layda Duda
Awesome article!! My 47 year old son has had YOPD for 17 years. You’re so right on about his days. I help during the day and my heart hurts from seeing his struggles of the awful disease. Thank you.
Sherri Woodbridge
Thank you so much for your heartfelt comment. May this be a great day for you and your son!
JaNelle
A compelling argument for surrounding yourself with ONLY THOSE WHO are fully informed, totally supportive and intelligent enough to realise that
n o b o d y would 'pretend' to have these cruel and devastating challenges ...
Sherri Woodbridge
Thank you, JaNelle for your supportive comment!
Casey Huisman
Wow, is that true? Are there people who think we’re making this up? Casey at Parkinsonsomy.com
Sherri Woodbridge
Casey- unfortunately, yes, there are really people that do believe/think that their spouse (in the two cases I personally am aware/know of) is pretending. Crazy, but true. I think it is more they don’t - for whatever reason - want to believe it so they deny. Doesn’t help the patient at all. Just makes it worse and harder in so many ways. Thanks for your comment. I’m going to check out your site!
Tammy Kelly
I had a neurologist years ago accuse me of faking. Why in the world would anyone fake having such an ugly, debilitating illness?? I was also told that I had a stress induced psychiatric illness by a jerk at The Cleveland Clinic...needless to say I didn't stay for the rest of that assessment. The doctors sometimes, oftentimes really, make this harder than family and friends do.
Pamela L Alms
Thank you Sherri For your insight and sensitivity.
Now we just have to get those in denial to read your article.
When I am really down about my daily struggle with my PD shadow (I refuse to call it a disease....!!!) I just go flat as I call it, I lay down.
Sherri Woodbridge
Thank you, Pam, for your encouragement!
Deb
Thank you, Sherri. Sometimes it feels like if we
didn't have each other (PWP's) we wouldn't have
anyone.
Sherri Woodbridge
Hi Deb - I’m glad it spoke to you and you’re right - sometimes it feels like that , for sure! Hang in there and don’t forget, we’re in this together!
Dan McFarland
Hi Sherri, I want to commend you for writing this. It's absolutely infuriating to have providers and others treat you with suspicion, especially if you've always been a person of character, and at a time when you don't feel good (even miserable at times). Unfortunately, these experiences are all too common amongst Parkinson's sufferer's. I'm not sure why this phenomenon exists, but perhaps it's due to the wide array or variability of symptoms. PD is no fun and to have anyone treat you this way adds pain to an already distressing situation. While I appreciate my physicians, Michael J. Fox once said, "The Parkinson's experts are the ones who actually have the disease." Thankfully, there are forums like this one in which kind people like yourself share their experiences.
Sherri Woodbridge
Dan - Thank your for taking the time to comment and your encouaraging words!
Alexa Guhser
What about the druggie who fakes PD to get disability checks? Is there a way to test the disease?
Sherri Woodbridge
Hi Alexa - Before I answer your questions, may I ask why you think this person you question is faking it and are you related to this person or a friend of this person?
Deb Singleton
No one is going to be able to fake Parkinson's for very long and get away with it. Anybody that accuses someone
of faking it needs to walk a mile in our supportive shoes and break in to the lovely sweats that are part of the glamorous way we live.
Parkinson's is different for every one, there are no specific tests for it unlike MS and other neurological
diseases.
Ditch negative comments and lose accusers. Stay with the positive support from family and friends.
tests
Sherri Woodbridge
Deb - thank you for your comment in regards to Alexa’s comment. I totally agree.
Sue
My stepson is an addict and alcoholic. His financial support from his mom and us was recently cut off. He called on a recent Monday and told us that the doctor told him that he had Parkinson's. We had not ever witnessed any symptoms prior to this. By Friday of that week, he tells us he had fallen multiple times, hit his head and was knocked unconscious more than once (no one witnessed this). We met him at a restaurant 4 days after the diagnosis. He was shuffling his feet to walk, he stuttered, couldn't find words, told us his sense to smell was heightened and he could smell the urine from the bathroom and could tell us who in the restaurant had sex the night before. He dropped his fork multiple times and started to drool from time to time. Now two weeks later, he is using a walker and tells us he has every symptom of stage 4 Parkinson's and some of the stage 5 symptoms. He will not allow any of us to be authorized to talk to the doctor. He also tells us that he will never be able to work due to him having Parkinson's. Again, this has happened over less than a 3 week period. He is 37 years old. Do we believe him? He faked a home invasion once and even cut himself to make it look real. He admitted that he did this because he wanted attention from his friends. He has sent pictures of wrecked cars that were totaled and told us it was his in order to get money. Sherri - do we hope he is telling the truth or do we pray that this is another cry for help? Both break our hearts.
Sherri Woodbridge
Sue - i am so very sorry to hear what you are going through. I really don’t know what to say as if you hope he is telling the truth then he has PD but at least you know what you are dealing with although i personally have not heard of PD progressing that fast nor having their smell heightened like that. The ability to smell is usually lessened. I am not a doctor but i suppose anything is possible. If it’s another cry for help or not, he may benefit from counseling. I am so sorry and my heart breaks for you and with you as I can personally understand somewhat what you are going through and it is so very hard...
Glenda Smedley
People will fake it because they don't want to work. The same reason they fake all sorts of illness's. Attention, disability, ect. I've have personally seen a doctor tell a patient after simply looking into her eyes she had Parkinson's it became a Dx with no further exam or tess.
Steven Martin
Thank you for sharing your experience!! GOD LOVES YOU!!
Sherri Woodbridge
Thanks!
Susanna Parker
Hello Sherri,
I have been dealing with symptoms for awhile. Sometimes I feel that people think I am faking. I wish I was. I have been on a medication that has finally been helping with my symptoms. It doesn’t take away all of the symptoms but it helps. Your blog has brought tears to my eyes, because you are right this is not something to joke about. Nothing about the symptoms that I have been experiencing have been fun and is not anything I would wish on someone else. Thank you for speaking out for everyone that doesn’t want to believe what is happening is true. Wishing everyone the best in the fight against the every day struggle.
Sherri Woodbridge
Thank you Susanna for your comment and encouragement!
patrick
My father has Parkinson's. He was diagnosed three years ago. For many years something chemically was happening with him where he felt depressed or filled with anxiety. Then one day his gate changed; he began to shuffle instead of walk, his neck became extruded and rigid etc. Two years ago he moved in with my family and has in many ways confused us. Example: we found him in his room at 6am on the floor unable to get up and he had soiled himself. We had to call the paramedics. He couldn't hold himself from sliding off the edge of the bed that night as he was taking off his socks before bed time. Two days later he's walking around without his walker scaring all of us to death saying "relax, I'm fine".
As a devoted son who takes loving care of his father, I understand why many people are confused that some PD patients might be "faking" or "exaggerating" the situation. My father has no other children and is terrified he's going to live out his days alone in an assisted living or nursing home. Every day my wife, my son and my life is about my father. He gets angry when I leave. He gets angry when he can't have meatloaf for dinner and has no problem with me missing out on life including my son's sports because he gets anxiety when we leave and bring in his nursing care. So while I sympathize with those cursed with this terrible disease it's equally abhorrent for those of us loved ones that have to care for those with PD. The disease is confusing and inconsistent and for those us trying to understand how to evaluate and manage our loved ones it's virtually impossible. My father says he's deathly afraid of falling yet we regularly catch him walking without his walker one moment and then claiming he can't move his legs or stand up the next.
It's no secret that many elderly and advanced PD patients lose their ability to maintain empathy including for those caregivers who are sacrificing their lives and families to care for them. It's a double curse but I think it's extremest naive for people to disregard the idea or concept that this disease is anything but confusing. And that's assuming that the loved ones have a healthy, trusting relationship with the PD patient. If there's any lack of trust this disease will absolutely prey on those insecurities.
My father has PD. I love him dearly, but there's not one day that doesn't go by where I don't think he's faking, exaggerating or being completely selfish and using every chance he can to solicit our sympathy for him and his unfortunate prison sentence with PD.