The thing I've noticed, and try to employ when talking to strangers, is to ask questions and tell small bits of you're own story. I start with the bits of my story. An example might be related to my walking and balance issues. If I'm within speaking range I might say, "I hope I didn't worry you that I might bump into you. I have Parkinson's and what's bothering me most lately are balance issues. You've opened the topic without mentioning the other person at all.
I had a very similar experience last year on a trail where I walk and jog. I noticed a guy (complete stranger) up ahead who was hardly moving his arm while walking. When I caught up with him, I mentioned it: "Hi - you know you move your left arm like I do." After a pause and a totally confused (and sort of unwelcoming) look, he said something like: "What are you talking about?!?" I didn't mention Parkinson's -- judging from his reaction, it just didn't feel right. So I wished him a nice day and quickly skedaddled! My take away: It's situational. If he'd reacted differently, or if I'd met him before, I'd've probably asked if he had PD, but he seemed a little annoyed that I called out his arm swing. Another takeaway: It's funny how I immediately notice folks' arm swing and gait.
It's so true! You notice how people move in a completely different way. And I love that you used the word skedaddled, I can totally picture it. Thank you for your comment Ken : )
I’m a nurse and over the years I have seen people, total strangers, out and about, who I thought looked“unwell” but rarely, if ever have I stopped them. You kinda knew this guy so that’s a little different. And your PD radar was spot on. 🙂
You are right...if he was a total stranger I wouldn't have said anything and like you I too have been out in the world and seen people who have recognizable symptoms. Others have commented when you have PD you develop an eye for the signs. Thank you shaky : )
Great video. I've been watching since I was diagnosed about a year ago. I don't do a lot of posting but I thought I would make an exception here and tell you how down to earth and informative I find your videos. It's really helpful, so I hope you keep doing them. As to your question, I would never be offended if someone asked me if I have Parkinson's, but I have become more cognizant of other people I see when I'm out or walking, etc. For me, it's the arm swing thing that's a dead giveaway. I don't swing my arm until my wife smacks me on the arm with a "swing your arm" command. LOL. I haven't approached anyone to inquire about them having Parkinson's, but I think it would probably go with me introducing myself and sharing some info about me and leading into "I've noticed you don't swing your arm either, do you have Parkinson's too?" My two cents. God's speed!
I'd say it's probably better to err on the side of caution, so yes, I think you did the right thing by asking the gentleman. Even if he didn't have PD, you at least showed him some concern.
😂 Yes, it’s been a long hot summer. Maybe it’s no different asking a woman how far along they are on their pregnancy. Then wanting to dig a deep hole when told she is not pregnant. It’s a lot different for us that know all the symptoms plus. We may want to be helpful. In the end it’s just awkward. I’m glad he came back to share his news. Glad you posted this, thanks.
I have asked people a few times over the years and it has never been a problem, I always open with, "do you mind if I ask you a personal question." I agree, it is situational, I don't ask everyone.
I haven’t found myself in this spot…if I remember correctly this was the only time I did it. Totally situational. Thank you for adding your thoughts ❤️
I agree that it's situational. I would prefer to engage in conversation long enough to gauge their personality. If I felt very strongly they have PD, then I'd start of with talking about my PD symptoms and say how noticed their arm doesn't swing...and let the convo play out from there. I think it's better to bring it up (if the situation is right) in case they have no clue and it ends up leading them to a diagnosis sooner than later. I think your situation was handled perfectly. Also, if someone did get shitty about it....I would explain how difficult it is to diagnose and was just looking out for them.
Yes. Someone else commented about discussing our own Parkinson's to see if they might feel more comfortable talking about it. It's situational for sure and I believe most people who'd ask are looking out for the person and to connect because it's wonderful to have friends with PD...Friends like you : )
I am loving the fan while you talk thing, I am not sure what it is, but it was kind of cool with the blue color. or something. A nice touch to the video.
I love that fan ❤️ It goes everywhere with me, Las Vegas, concerts, the poker table, at home. Sometimes I fan fast and sometimes slow, and blue is my favorite color. Thanks Mike 🥰
My wife had a doctor’s appointment about 2 months ago and I was waiting in the waiting room, I was the youngest one in the waiting room as the other people were in their 70’s and 80’s and one of the patients husband came up to me and asked me if I had Parkinson’s and I said yes. He noticed my slight tremor on my right hand. It really didn’t bother me at all, he was just curious and was a pleasant person.
I was at a poker table and a neurologist sat next to me and asked me. Sometimes I mention it at the table and sometimes I don't when I play. But like you, it doesn't bother me either 💕 Thank you for your comment!
Sometimes if I bring up my diagnosis to others they come out and tell me. This was very kind of you to share this. I do want to share with you my insurance finally paid for Nuplazid medication for auditory and visual hallucinations “Bad stuff”. I’m baffled at the pharmaceutical companies !!! Charging $5,200.00 for 30 days. Unreal. “But it works👍”
Roger that is great news!!! Ridiculous what they charge but I am SO happy to hear your insurance is covering it and that it works 🤗 🎆 SO SO happy for you!!! 🥰
@@danbmil9it has worked wonderful for me. My A1C has dropped dramatically as well as my weight. Along with daily exercise for weight and A1C down your entire body feels better. So the hype is very true for me. 👍💪
I have tremor dominate PD that's very obvious. I've been asked multiple times if i have Parkinson's and have never been offended, but then i do have PD. Not sure how I'd feel if i didn't. In each case the person asking also had PD, so I've viewed it as an opportunity to quickly bond or at least relate. Enjoy your broadcasts!
What's the saying life is like a box of chocolate you never know what you're gonna get. It is situational, but I think saying I'm wondering if you have Parkinson's because I do and I had some of the things I've noticed... is the best way it can be framed. I think if you're going to do that it needs to come from a place of sharing information, and you have to be prepared for the response positive or negative, and that's the burden you carry in asking the question. There may be a time when you highlight something for someone and they get care sooner, or you could run into somebody who is aware and working through their denial and anger and maybe be angry/sad that somebody picked up on it. You take a risk in asking the question, but if you're prepared for whatever type of answer/reaction comes from that question and you're doing it in a manner of sharing/caring then in the right situation yes I would ask. Again, it is a very situational scenario. 😎🌴
There was this guy running for an important political office... Seriously: I am quite certain he will be diagnosed with PD or LBD some time after the coming election. It's hard to understand how people around him missed the signs, if that is what transpired (BTW I was prepared to vote for him regardless, but with trepidation and a bit of anger about letting the situation get to where it did)
I couldn't agree with you more! I've been saying the same thing for the last year...There has to be people who know....I think some people knew about Reagan having Alzheimers but didn't say anything?! I too was going to vote for him. Joe and the democratic party should've never let it get to the point it did. Sigh of relief it's working out and some serious headwinds of joy! 🥰
@@rogerokelley I think it's a legitimate subject, not meaning to offend. I've had to give things up to accept this disease. I would not vote for me for President. (And this is hopefully unrelated to my or anyone's' political persuasion)
@@danbmil9 and @Parkinsonswigglesproject political campaigns try to never accentuate the negative. With some glaring exceptions. We may not be doctors but we know symptoms because we have them. We see it in others whether we say anything or not. It’s high time that we stop these eternal candidacies to our national detriment. I am thrilled to finally have candidates who are younger than me. I almost don’t know how to act. 😂
Jumping in on this. Imagine being stuck out of state with your in-laws and their entire side of the family, who are all huge Trump supporters, when that debate came on. Meanwhile I’m in my 6th year of having pretty progressive yopd just sitting there while they all make fun of Biden for how stupid he sounds and how his face looks. I tell them from the second he walked out I could tell he was very sick with PD or even LBD and that the way he sounds and looks are exactly how I sound and look and they still keep making fun of him. It was brutal. I don’t know how they couldn’t fathom how horrible they were making me feel.
@@daniellelittle6981 I am so sorry to hear that....Where is the empathy and family love? But what is the saying about people in groups...herd mentality. I've been saying to my husband I think Biden has PD, and there are other comments as well here saying the same. Thank you for sharing your story with us ❤
So you have to come to Ireland where I am at the moment. Germany got to hot for me so I left. I think when you are a person with PD your self you have an eye for the symptoms. I hade two situations where I sade to the wife's of two men I would go to see an neurologist with you husband. And in both cases I was right. One of the men was first with a neurologist he sad to him you are okay. The second one sade you have PD after the dat scan. The first neurologist apologies about the wrong diagnos. But he lost one year of good quality of his life. Enjoy a cool Guinness I had one myself in an irisch pub to night with irisch music. I forget my PD with the music and felt light and happy. Cheers
Hi Doris! I agree and believe we can see the symptoms. I love that you had some fun at a pub and forgot all about your "PD with the music and felt light and happy." That's sounds like the perfect kind of night to me! : )
The thing I've noticed, and try to employ when talking to strangers, is to ask questions and tell small bits of you're own story. I start with the bits of my story. An example might be related to my walking and balance issues. If I'm within speaking range I might say, "I hope I didn't worry you that I might bump into you. I have Parkinson's and what's bothering me most lately are balance issues. You've opened the topic without mentioning the other person at all.
Yes!!! Brilliant 🥰 That is the way to do it!!! 💕
I had a very similar experience last year on a trail where I walk and jog. I noticed a guy (complete stranger) up ahead who was hardly moving his arm while walking. When I caught up with him, I mentioned it: "Hi - you know you move your left arm like I do." After a pause and a totally confused (and sort of unwelcoming) look, he said something like: "What are you talking about?!?" I didn't mention Parkinson's -- judging from his reaction, it just didn't feel right. So I wished him a nice day and quickly skedaddled! My take away: It's situational. If he'd reacted differently, or if I'd met him before, I'd've probably asked if he had PD, but he seemed a little annoyed that I called out his arm swing. Another takeaway: It's funny how I immediately notice folks' arm swing and gait.
It's so true! You notice how people move in a completely different way. And I love that you used the word skedaddled, I can totally picture it. Thank you for your comment Ken : )
I’m a nurse and over the years I have seen people, total strangers, out and about, who I thought looked“unwell” but rarely, if ever have I stopped them. You kinda knew this guy so that’s a little different. And your PD radar was spot on. 🙂
You are right...if he was a total stranger I wouldn't have said anything and like you I too have been out in the world and seen people who have recognizable symptoms. Others have commented when you have PD you develop an eye for the signs. Thank you shaky : )
Great video. I've been watching since I was diagnosed about a year ago. I don't do a lot of posting but I thought I would make an exception here and tell you how down to earth and informative I find your videos. It's really helpful, so I hope you keep doing them. As to your question, I would never be offended if someone asked me if I have Parkinson's, but I have become more cognizant of other people I see when I'm out or walking, etc. For me, it's the arm swing thing that's a dead giveaway. I don't swing my arm until my wife smacks me on the arm with a "swing your arm" command. LOL. I haven't approached anyone to inquire about them having Parkinson's, but I think it would probably go with me introducing myself and sharing some info about me and leading into "I've noticed you don't swing your arm either, do you have Parkinson's too?" My two cents. God's speed!
I'd say it's probably better to err on the side of caution, so yes, I think you did the right thing by asking the gentleman. Even if he didn't have PD, you at least showed him some concern.
Very situational and something you feel or you don't. He's a sweetheart and our dogs love each other ❤️
always talk about it. lift the stigma. make it social. the world is changing.
I am totally open to talking about Parkinson's : )
😂 Yes, it’s been a long hot summer. Maybe it’s no different asking a woman how far along they are on their pregnancy. Then wanting to dig a deep hole when told she is not pregnant.
It’s a lot different for us that know all the symptoms plus. We may want to be helpful. In the end it’s just awkward. I’m glad he came back to share his news. Glad you posted this, thanks.
Awkward and not know how the emotional domino's will fall will make me pause even longer than I waited this time. Thank you for your comment 🥰
And yes, sooooo hot this summer and toooo long!! 🙃
I have committed that offense before…….yikes!
One time someone thought I was on drugs.
I've been there and kicked out of my regular casino because of my wiggles. Only once though and hopefully never again 🥰
I have asked people a few times over the years and it has never been a problem, I always open with, "do you mind if I ask you a personal question." I agree, it is situational, I don't ask everyone.
I haven’t found myself in this spot…if I remember correctly this was the only time I did it. Totally situational. Thank you for adding your thoughts ❤️
I agree that it's situational. I would prefer to engage in conversation long enough to gauge their personality. If I felt very strongly they have PD, then I'd start of with talking about my PD symptoms and say how noticed their arm doesn't swing...and let the convo play out from there. I think it's better to bring it up (if the situation is right) in case they have no clue and it ends up leading them to a diagnosis sooner than later. I think your situation was handled perfectly. Also, if someone did get shitty about it....I would explain how difficult it is to diagnose and was just looking out for them.
Yes. Someone else commented about discussing our own Parkinson's to see if they might feel more comfortable talking about it. It's situational for sure and I believe most people who'd ask are looking out for the person and to connect because it's wonderful to have friends with PD...Friends like you : )
Interesting as usual. I can relate to them comments I wonder how others view me. Thanks David
Thank you David!
I am loving the fan while you talk thing, I am not sure what it is, but it was kind of cool with the blue color. or something. A nice touch to the video.
I love that fan ❤️ It goes everywhere with me, Las Vegas, concerts, the poker table, at home. Sometimes I fan fast and sometimes slow, and blue is my favorite color. Thanks Mike 🥰
My wife had a doctor’s appointment about 2 months ago and I was waiting in the waiting room, I was the youngest one in the waiting room as the other people were in their 70’s and 80’s and one of the patients husband came up to me and asked me if I had Parkinson’s and I said yes. He noticed my slight tremor on my right hand. It really didn’t bother me at all, he was just curious and was a pleasant person.
I was at a poker table and a neurologist sat next to me and asked me. Sometimes I mention it at the table and sometimes I don't when I play. But like you, it doesn't bother me either 💕 Thank you for your comment!
Sometimes if I bring up my diagnosis to others they come out and tell me. This was very kind of you to share this.
I do want to share with you my insurance finally paid for Nuplazid medication for auditory and visual hallucinations “Bad stuff”. I’m baffled at the pharmaceutical companies !!! Charging $5,200.00 for 30 days. Unreal. “But it works👍”
Speaking of meds, anyone have solid info to share re Ozempic? The hype around the trials seems almost too good to be true.
Roger that is great news!!! Ridiculous what they charge but I am SO happy to hear your insurance is covering it and that it works 🤗 🎆 SO SO happy for you!!! 🥰
I haven't.
@@danbmil9it has worked wonderful for me. My A1C has dropped dramatically as well as my weight. Along with daily exercise for weight and A1C down your entire body feels better. So the hype is very true for me. 👍💪
I have tremor dominate PD that's very obvious. I've been asked multiple times if i have Parkinson's and have never been offended, but then i do have PD. Not sure how I'd feel if i didn't. In each case the person asking also had PD, so I've viewed it as an opportunity to quickly bond or at least relate. Enjoy your broadcasts!
For me too it was the chance to bond, to have a local friend to talk to about it. Thank you grannyelizabeth ❤️
What's the saying life is like a box of chocolate you never know what you're gonna get.
It is situational, but I think saying I'm wondering if you have Parkinson's because I do and I had some of the things I've noticed... is the best way it can be framed. I think if you're going to do that it needs to come from a place of sharing information, and you have to be prepared for the response positive or negative, and that's the burden you carry in asking the question.
There may be a time when you highlight something for someone and they get care sooner, or you could run into somebody who is aware and working through their denial and anger and maybe be angry/sad that somebody picked up on it.
You take a risk in asking the question, but if you're prepared for whatever type of answer/reaction comes from that question and you're doing it in a manner of sharing/caring then in the right situation yes I would ask.
Again, it is a very situational scenario. 😎🌴
I so so agree! If you are going to go there be prepared for a variety of reactions and emotions. Thank you for your comment : )
Generally, unless it is really obvious or if he is the President of the United States, don't.
Indeed 🙃
No one even asks me anymore!
Now that you said that someone will : )
Yes that works my wife and kids have noticed that if they pull my pants from my pants bags I can move. 😊
Happy to hear it helps you get moving 🥰
There was this guy running for an important political office... Seriously: I am quite certain he will be diagnosed with PD or LBD some time after the coming election. It's hard to understand how people around him missed the signs, if that is what transpired (BTW I was prepared to vote for him regardless, but with trepidation and a bit of anger about letting the situation get to where it did)
I couldn't agree with you more! I've been saying the same thing for the last year...There has to be people who know....I think some people knew about Reagan having Alzheimers but didn't say anything?! I too was going to vote for him. Joe and the democratic party should've never let it get to the point it did. Sigh of relief it's working out and some serious headwinds of joy! 🥰
@@rogerokelley I think it's a legitimate subject, not meaning to offend. I've had to give things up to accept this disease. I would not vote for me for President. (And this is hopefully unrelated to my or anyone's' political persuasion)
@@danbmil9 and @Parkinsonswigglesproject political campaigns try to never accentuate the negative. With some glaring exceptions.
We may not be doctors but we know symptoms because we have them. We see it in others whether we say anything or not.
It’s high time that we stop these eternal candidacies to our national detriment. I am thrilled to finally have candidates who are younger than me. I almost don’t know how to act. 😂
Jumping in on this. Imagine being stuck out of state with your in-laws and their entire side of the family, who are all huge Trump supporters, when that debate came on. Meanwhile I’m in my 6th year of having pretty progressive yopd just sitting there while they all make fun of Biden for how stupid he sounds and how his face looks. I tell them from the second he walked out I could tell he was very sick with
PD or even LBD and that the way he sounds and looks are exactly how I sound and look and they still keep making fun of him. It was brutal. I don’t know how they couldn’t fathom how horrible they were making me feel.
@@daniellelittle6981 I am so sorry to hear that....Where is the empathy and family love? But what is the saying about people in groups...herd mentality. I've been saying to my husband I think Biden has PD, and there are other comments as well here saying the same. Thank you for sharing your story with us ❤
So you have to come to Ireland where I am at the moment. Germany got to hot for me so I left.
I think when you are a person with PD your self you have an eye for the symptoms. I hade two situations where I sade to the wife's of two men I would go to see an neurologist with you husband. And in both cases I was right. One of the men was first with a neurologist he sad to him you are okay. The second one sade you have PD after the dat scan. The first neurologist apologies about the wrong diagnos. But he lost one year of good quality of his life.
Enjoy a cool Guinness
I had one myself in an irisch pub to night with irisch music. I forget my PD with the music and felt light and happy.
Cheers
Hi Doris! I agree and believe we can see the symptoms. I love that you had some fun at a pub and forgot all about your "PD with the music and felt light and happy." That's sounds like the perfect kind of night to me! : )
I have parkinsons
You were trying to make a connection. You didn't approach it from an in̈sensitive "what's wrong with you" approach
Thank you...he was nice about it but not everyone will be and it's the after the question, especially if they don't have PD that worried me most.
😅😅
bonjour jennifer
Bonjour Mike : )