The YOPD Council: What Not to Say to a Person with Parkinson's

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While most things are said out of a place of good intention, as a person with Parkinson's you may have had some hurtful, insensitive, or irritating things said to you. In this YOPD Council session, our panelists discuss some of these moments in their life as well as what you can do to educate, advocate, and improve understanding.
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[@tomhosack8379]

I have to say, I was just recently diagnosed with PD on September 7, 2023 and I just came by this video and I just have to say thank you. You all have talked about a lot of things that have happened to me and I didn’t have a clue how to respond to people or how to act when certain things have been said. Thank you all again.

[@davisphinneyfdn]

Thanks for your comment. We are here for you. If we can be of any help, please reach out to our education team at [e-mail]. Also, in case you haven't already seen it, you might find value in our Every Victory Counts manual, which you can order for free here: davisphinneyfoundation.org/every-victory-counts-manual/

[@irenemanning182]

Hi I’m in Red Deer AB, enjoy listening to to your panel, wish my family would be move supportive. It’s hard living with PD alone but not alone.

[@lindafrasier5875]

My “favorite “ comment was when I was just diagnosed, my dear friend said, “Oh, don’t worry. They have pills for that.” I find this to be a very isolating disease. As others have said, people don’t know how to listen with their hearts.

[@davisphinneyfdn]

Yes. Isolation and the pressure to educate friends and family about living with Parkinson's are some of the harder emotional challenges many people with Parkinson's face. We are here for you.

[@steve1750]

That is the response I got after my diagnosis a couple of months back. They say, "Oh! But they have some really good medications for it now. " or "I think you've just got a bit of a tremor. " I am stage 3, apparently, and live alone, drop stuff all the time, have to be very careful when chopping food, etc etc, you know the drill. I go to a local club a couple of times a week for a beer, so I joke by saying, " I may spill my beer, but I always remember where I put it down." I am 70 and this has been with me for about 15-20 years but recently got much worse, originally it was very mild and I was told it was essential tremor then benign tremulous parkinsonism, now it has progressed they say Parkinson's, my GP calls it the,"the real deal." I live in a fairly remote area and my driving licence is essential, so I worry about how long I will be able to keep it. Thanks, everyone.😊

[@hesterschuler2217]

You are all wonderful people, many thanks.

[@ah5635]

I joined your talk three times to understand well everything you say -I am German and do not speak English so good. I was diagnosed with PD 10 years ago when I was 45. after the diagnosis I separated from my husband and since then I rise my two children alone and work full time. I hid my desease a longtime but it cost so much energy. After the first 10 year period I feel the Parkinson’s is processing quicker and as you said there is loss after loss each day. First the handwrighting, the balance, the energy, the stress resilience. And it is hard to face it. But today I learned so much from you all and found so many things which are similar to me. I often laughed an thought: yes. Same. I am not alone. I am not crazy. Thank you so much for this message. Unfortunately we do not have such community here in Germany. So I will come back and watch your Chanel as often as I can!

[@davisphinneyfdn]

Johli, I'm glad to hear you found the talk helpful. Don't hesitate to reach out if you have additional questions or would like resources on particular topics! Email [e-mail]. We're so glad you've found us.

[@user-qd4jo2pm2x]

Thank you for your PD explanation!

[@GoldenAgeDave]

I’m 57 and was diagnosed about 1.5 years ago. I WANT to talk to family and friends sometimes about it but I can’t seem to do it. Like I “just can’t go there” I was.NCAA All American tennis player and have taught tennis my whole life. I’ve really lost my MOJO as this was always what made me confident and proud. I have lost that now. I miss that feeling so bad. Blessings to you all. ❤

[@davisphinneyfdn]

We hope you can find a way back to that feeling. Many of our panelists have had to change their way of approaching activities they love. Some have participate in their sport with changed "rules" (Best Ball in golf or riding a recumbent or tandem bike, for example). We know also know many tennis players who have found that a switch to doubles tennis suited them, and still others have found that pickleball suits them better given the smaller court. In fact, a member of our staff who lives with Parkinson's just participated in a study investigating pickleball as a way of helping improve symptoms. The results were very interesting. If you'd like, please reach out to us at [e-mail]!

[@carmelitabyrd1703]

This was a wonderful discussion to hear. I felt right at home. I laughed, nodded my head in agreement, and reflected on some of the comments.

[@davisphinneyfdn]

Hi Carmelita, we're glad to hear it! The Living with Parkinson's Meetup meets once a month, so you can listen to them every month. They always have the best conversations :)

[@kathrynaldrich5441]

Since being diagnosed in 2021, I've experienced most of the comments and behaviors discussed. Bittersweet to realize we're in the same boat. I totally resent however having to teach others about our disease but maybe that's part of the anger and rage at even having PD that I've begun working in in therapy. Many thanks to Robynn for her "Listening for the Love" suggestion. Behind my clenched teeth, so help me God, I'm going to look for the Love next time someone puts their foot in the mouth about my PD 😄 but the sad part is, I won't have to wait very long 😡

[@traceyabbott5825]

Hi everyone, Tracey here from Australia. I was only diagnosed 1 week ago, aged 56. This conversation was so eye opening. Thank you. I’m having a hard time coming to terms with the fact that I feel fine now the medication has kicked in and not knowing what will come next. I had right side tingling/weakness and freezing while walking. I was so scared. I’ve also realised I’ve had symptoms for many years but blamed it on my other illness’. Again Thank you.

[@SouLightness]

For me its the gift that keeps on giving...the little things that drive you mad.

[@robbingregson2286]

Hi Tracy, I was diagnosed 9 years ago at age 58. I also had a variety of symptoms that made no sense. My best advice is to get a neurologist who specializes in “Movement Disorders” and look around for a support group nearby home.🌷💜🌷

[@diapers4eva]

Hi Tracy.I was diagnosed in westernaustralia 2019 .I thought I had MND . Sifrol Leva dopa & exercise have helped alot.I have incontinence & wearing diapers , waiting on a operation that will save my kidneys & but permanently need diapers.

[@binascraps2084]

Tom and Steve thank you for the great ,messages to. Keep us going. .

[@annetteheatherwalker]

I teared up absorbing the wisdom shared in this video - does the organization have a group for family members/parents/siblings to connect. I am a single parent supporting my youngest son, 42, with early onset Parkinson's. He was diagnosed at 37. The book we read from the organization was the best - we especially appreciate the wisdom from others who have PD.

[@davisphinneyfdn]

@annette - We don't have a group for families specifically, but we have a meetup for care partners. Lots of spouses, friends, parents, and adult children come to those. You can register for those here: davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/

[@robbingregson2286]

A few months ago a “surgeon” about to perform a colorectal surgery (on me)asked me if I had emotional problems because I was crying prior to surgery. I answered that as a psychotherapist myself I have always “seen” somebody and that I have Parkinson’s. I asked him if he’d like to learn more about that, to which he replied “no”.

[@therealkathleenkiddo]

“ Study in lemurs that I saw in readers digest!” Kevin 🤣😂🤣

[@church1126]

I agree with you Heather.

[@genesebelius4466]

Thanks so much, your a great support group.

[@antondelacruz9362]

Thank you for making this.

[@becksullivan4796]

We have recently had a relative diagnosed with Parkinson’s. I just wanted to say that I believe most of the family has the best intentions when asking questions or trying to provide comfort. I believe the intentions for the most part are not to diminish the situation. The average person knows little about many diseases until someone they care for is effected. For the sake of your own state of mind I hope you look at these mistakes teaching moments and those who love you just wish and pray you did not have this illness. I had a family member whose son was dying. He fought a good fight for years but at 18 he was done. It was heartbreaking. I said to his mom he looks better today. What I meant was his breathing was less labored that day and he seemed to be resting easier. His grandmother yelled at me-what’s wrong with you?? Do you think he’s going to be cured? I said no. But he simply seemed to be more comfortable which was all you could ask for. The stress of dealing with illness can create conversation that may not be logical but may just be about someone wanting you to be ok. I do understand how such things can be misconstrued. Then again some people you will encounter are just stupid! I wish you all well. I pray for an answer

[@davisphinneyfdn]

Thank you for watching, Beck. Knowing what to say is difficult. Add to that the fact that there are as many response variations as there are ways to say something. You say one thing to one person and they are seriously offended and say the same thing to someone else and they laugh. We could all use more grace when we communicate and sometimes giving people the benefit of the doubt is a great approach.

[@KMx108]

Dumb thing I said to someone once: a man with no arms was on his own and trying to open a door into a café with his foot and it wasn't working out. I jumped into action and said, "here, let me give you a hand..(!)..oh my God what a stupid thing to say." I was mortified but he was so kind and said it was okay.

[@sandrakfriel4342]

I was in the process of having tests at the age of 29 and a single parent. I was scared about what was happening to me and worried that my children would be tsaken away from me if the diagnosis turned out to be serious. I was having an MRI when the radiologist asked me some quedtions about my symptoms. I explained that I a slight tremor when I moved my arm. ( which although is not typical with PD it's not that unusual). He leant dowm to me and said,"if you are going to fake a disease at least get the symptoms right." I was so shocked i couldn't respond.

[@davisphinneyfdn]

Wow, Sandra. That is absolutely awful. I'm so sorry you experienced that. I hope you have found a doctor who understands Parkinson's and can give you the care you deserve.

[@judygrainger5380]

What a bastard!!!

[@robbingregson2286]

Hi Michael, I have “played the Parkinson’s card” when a credit card company wanted to charge me $10. for speaking to their customer service department vs. the chat line!

[@scottjohnson6705]

I enjoyed this video and I think it will help me with my upcoming parkinson's experience. I'm dual diagnoses: parkinson's and schizo-affective disorder. My parkinson's isn't really bad yet but my mental illness has been with me at least since I was 20 (I'm 53 now). On a good day only one weird thing will happen. The rest of the time I can't tell what's real from hallucination. I often times hallucinate people and I can't tell if they are real or not. I imagine that I am going to be in real trouble one of these days because of the combination of these two diseases. If there's anybody out there in a similar situation please let me know.

[@davisphinneyfdn]

Thank you for watching, Scott. We've done quite a few webinars on the topic of hallucinations. You can may want to check some of these out: kzbin.info/www/bejne/naPMpJWQZa5oZ6s kzbin.info/www/bejne/gaCogGd3mdCmfJo kzbin.info/www/bejne/eIexo2mij7draNE

[@marycain5668]

The first neurologist I went to never even told me what she thought it was told me to come back in 3 months. She wrote all of it down in our medical notes which she probably know I had no access to because it was a different hospital than I usually go to. Unconscionable! Unprofessional I will never believe the neurologist again. I had a pulse of 40 when I went to her office the nurse knew that something was very wrong with me and this woman said oh I'll check it and she never checked it and she let me leave that office I could have died in the parking lot or any other time in the next few days before I got myself to the ER when she could have walked me to the ER for her office! I am dumbfounded by the stupidity and the uncaringness of the medical community that I have seen first hand. I would never believe that I have Parkinson's! Based on her behavior and her assessment I believe that she is incorrect.

[@antondelacruz9362]

I used to be very athletic. I worked so hard to be the best at my sport. Diagnosed in my early 30s 5 or 6 years ago, as i had become constantly fatigued and weak and suddenly discovered i couldnt climb steep stairs without walking on all fours, or walk backwards in a footwork drill without seriously risking a fall. My coach first said he saw nothing wrong with me, then whenever i tried to explain a symptom he said he had the same thing sometimes. This went on for a couple years. The straw that broke the camels back was when we were watching eliminations for the national team, by which time id had obvious symptoms for several years. 30 mins in, my coach asked if i could join because the players we were watching sucked. I wouldve joined and won easily 10 years earlier. Even 5 years earlier. In all modesty and eithout exaggeration, our technique is the best in the country and our casual group could easily beat university teams half our age. I was incredulous and he said he understood, but he was clearly disappointed. Ever since then ive remembered to lower my expectations. Last time i joined group training and couldnt do anything right, coach said it was a shame because in the past only i could keep up with his pace. Then he said he was grooming a replacement. Of me. Because i couldnt do it anymore. Thats how he finally accepted that i was sick: by telling me he had found a replacement. After 12 years of training, often 5 to 6 hours a day, every day. I actually train more now to control my pd. But im done and have been replaced. Coach used to say i could join training and just watch and hang out. Imagine my enthusiasm. Well thats another sob story for the comments. Apologies, but i think everybody here has experienced the same thing and probably understands my thoughts and feelings on it.

[@joepower1368]

Ok

[@nanelgonowon5448]

Thanks you for this page im also diagnosed young onset parkinsons its sồ difficult to accept. Bút because of this group of people i use to accept it. I feel good now.

[@drcspai4404]

8:20 l 15:12

[@drcspai4404]

T 25:52

[@genesebelius4466]

You are fabulous 😍

[@shoshanachavab]

The worst thing is my daughter telling me that I said that before often ‼️

[@MikeMercury]

love your video

[@davisphinneyfdn]

Thanks for your comment!

[@terrywoosley5628]

12/24/23, 2:45 central time What does a movement specialist bring to the picture?

[@davisphinneyfdn]

Generally speaking, most movement disorder specialists bring increased experience working with people living with Parkinson's and deeper understanding of Parkinson's than most healthcare providers. This can be especially important as treatment regimens become more complicated. It must also be said that there are certainly excellent Parkinson's care providers who are not formally movement disorder specialists, too.

[@geanh.9499]

I think people are trying to connect.

[@fredschwab2924]

More rediculous than hurtful, when getting approved for disability I received a letter from the head of human resource department ending it with, "we wish you a complete and quick recover" 🤦🏻‍♂️😱🤬🤣😂

[@anndebude515]

What would you like to hear a person say to indicate they love and care about you.

[@fredschwab2924]

@@anndebude515 I don't know exactly, but like wishing you the best on your journey, or let us know if there is anything we can do, something along this lines, not saying wishing you a complete recovery when you have an incurable progressive disease.

[@geanh.9499]

Hugs

[@thelmafernandes4756]

I use walker

[@sonyaalsberry9359]

Does anyone have Parkinson’s from the camp lejeune contaminated toxic water from 1957-1987?

[@kathleendowner6506]

My partner has eczma and Parkinson's

[@cdp6896]

My friends are just pretending nothing’s changed

[@robbingregson2286]

My friends don’t invite me to do things with them because they assume “I can’t do steps” or some such nonsense :(

[@thelmafernandes4756]

I freeze all the time

[@mushfiqahmad1]

The most hurtful: Everybody has one disease or the other these days

[@peggyharris6156]

It could be worse at least your walking.

[@peggyharris6156]

That's what some people say.

[@binascraps2084]

Michael I understand completely because I do this all the time and bawling. for nothing for no reason. It said it made me cry it’s sad it makes me cry but my psychologist thinks that I’m crazy so whatever I think she’s just crazy

[@kathrynaldrich5441]

​@@binascraps2084 But there is a really valid and organic reason for your emotional responses, it's the lack of dopamine I can barely utter a single sentence about my. PD without busting out crying

[@thomasbethune]

Heather aka Slim Shaky

[@thelmafernandes4756]

I have parkinson I lost my friend because I have parkinson

[@shoshanachavab]

I take a stick with me in heavily populated places.

[@MikeMercury]

hello dear

[@michaelgangi2038]

nnn

[@jacobseidman8242]

You are spitting in the face of those who care for you. This video should be taken off.