Am I boring you? Are you trying to look tough? Why are you so angry all the time? These are questions I heard repeatedly from co-workers, friends and family before being diagnosed with PD. It was irritating! However, it all makes sense now. The movements that are second nature to others require those of us with Parkinson’s to actively think about something as simple as a smile. Thx for another great video!
Thanks for sharing. Before PD, I would have never imagined that one day I would have to actively think about facial movements. It's amazing how much PD effects the body.
I had a young fella say to me, "would it kill ya to crack a smile!" I thought, but I am smiling how come he cant see that? I got a look in a mirror, and saw the problem.
Good attitude to have. In the months leading up to my diagnosis I had customers making strange faces at me reacting to my expression, it was perplexing but now I’m conscious of it and try to remember to smile as well, it doesn’t always work though. Just one of the many battles we face.
Yes, it is challenging. There's facial exercises for PD that help with the rigidity. I likely won't be consistent with those...but I'm going to try to remember to do them from time to time.
There are a whole bunch of us who truly appreciate that you share your true thoughts and feelings as you go through this. Your attitude to stay positive is admirable!! I'm sure it's not always easy
Thank you so much for the feedback. It's a little bit of a struggle. I do my best not to go into pity party mode and for the most part I've been doing really good with that.
Sometimes when I see someone they have a cold expression on their face. I'm like, why are they looking at me like that? Then I realize that I'm looking in the mirror, that they are giving me a cold stare because that's what I'm exuding. This never happened in my life until my diagnosis. All my life I was a smiling person. Even got picked on as a kid because I smiled all the time. But hypomimia took me over, and apathy, and fatigue, etc. etc. :(
I try to make a point to force a smile and say hi when I see people. It tends to make me feel better when they smile and respond. Makes me feel like my face doesn’t look as grumpy. I also make it a point to get out and do fun things to fight the apathy (hang out with friends, go ride my bike, go to parks, play the piano, exercise, etc.). Praying has helped. I just changed my state of mind….I refuse to let myself get depressed. I hope you can find a way to get yourself in a better place. You’ve got this.
Superficial comments like that are lame!! It would be like someone saying about me the woman who owned the bar and has a tremor!? Whoever makes these kind of comments ignore what matters, character and kindness, being real, and you’ve got all that and more in spades!!! ❤😘🙌
I get told by colleagues that I look like I’m constantly in a bad mood but I’m actually not i now know that it’s a symptom of my Parkinson’s disease. I’m newly diagnosed on Tuesday it will have been a month since my diagnosis. So I’m just trying to navigate these new waters ahead of me. Thank you for telling everyone what the medical term is for mask face.
I'm a medical student, and your content is more helpful and humanizing than our presentations in class. It really helps it stick. Thank you for sharing your experiences.
Thanks!! Yes, pushing ourselves to be involved and address things like the Mask Face, can only help us stay as strong as possible. One thing I've also learned from 23 years in AA recovery is that Acceptance is a necessity!
I totally agree! I will say that if you saw my face right now you would probably think she doesn’t agree. Lol. I, too, have to consciously tell my face to smile. My saving grace right now is I laugh a lot. So, that signals enjoyment to my friends and family. Thank you so much for sharing!!!❤
I refer to it as my zombie look, or if I'm having a really bad day with my Bradykinesia, I see myself as "dead man walking." I often wear sunglasses on those days to try and conceal it somewhat.
Hi Michele, love your positive outlook on life, but clearly people need more education about Parkinson's. Thank you for sharing. I got to learn a new term today as well! Awesome😀😀😁😁😗😗
Decades ago my boss told me I always looked mad. I asked her to clarify and she thought about it, finally saying "your face is always red." I told her "I'm usually hot." I think she didn't know how to describe it. This was long before I ever thought Parkinson's. No tremors. Can one have that sort of symptom so far back? I'm still not dxed w Parkinson's. I have Essential Tremor as a dx, but there's more to it than that. Like you, I feel I am giving myself an in-real-life talking guide about navigating life, looking at myself from the outside in. I will add that I have Aspbergers, a late-in-life dx which explains a lot of my life. I feel detached from my life, as though I'm watching a movie. Outside in.
I also wonder how far back the symptoms started really showing. The comments about my face go pretty far back. Thanks for sharing. I wish you the best.
U know im 42 ans im starting to notice things like i have a hard time standing , not falling back, twitching, steps...i feel rigid..i don't really give a shit, u know? Im me .if these things happen, well i hope i don't split my head open but im ok otherwise. Im not worried. I stand knees bend. Being on the phone is certainly the most balancing trouble but whatever.. its life. All the experience. My friends have all been dead from opioid epidemic so im doing great just being here
Was recently laughed at by a table of people during off-time at a birthday party... "I'm not sure what he's been having but I want some!" she said. I replied that "it's Parkinson's Disease and she's welcome to it." Definitely one way to quieten a group! 😂
It’s unfortunate that some people don’t think before they speak. Hopefully they learned a valuable lesson. I love educating people on Parkinson’s. I’m very open about my Parkinson’s. The more people know the less that kind of stuff happens.
Exactly! It is what it is!! True! Thx for sharing. I get the masked look when the sinimet wears off. No expression, facial muscles relaxed. Oh! Guess what?? I bought head gear to and will try sparring in the ring tonight!! See you soon ❤
I think I have parkinson's I have the shakes quite ofter as I age. I had a major stroke in '99. Also I had seizures but I hasn't one in two years, my lips move around before I take my meds (seizure meds) but they work for me. Oh I didn't mention why I had the stroke I abused alcohol, did Michael f. Fox say that abuse alcohol causes his?
I'm not sure if it causes PD. I'm going to guess that it doesn't help matters though. You should definitely see a neurologist to see what is going on. Wishing you the best.
@@SDWP I had an appointment for that but she canceled it. My mother in law took us, it was 2018 maybe or 19. Another one said he said the shakes they were seizures but we didn't agree on that. Oh boo I live with the shakes around 20 years now. Thank you for commenting back.
I am glad to come across your channel. Thanks for spreading the information, inspiring others and motivating. Is it possible to connect to you as it will be beneficial for me as I am recently diagnosed with YOPD.
Thank you for the kind words. I'm sorry to hear about your recent diagnosis. I have a lot going on, but I'm good at responding here in the comments. Best wishes.
I don’t know why your video came up, but I have to tell you about Dr Matt Phillips, a neurologist from Waikato hospital, New Zealand. He has published research on a study with Parkinsons patients where he had success with a ketogenic diet and fasting I believe. I have been watching a lot of interviews with him on TH-cam lately because I have an acquaintance who is just been diagnosed with dementia. according to Dr Phillips Parkinsons Alzheimer’s Huntington’s are all the result of mitochondrial dysfunction and can respond to metabolic therapies. I hope you look into this.
Thank you for the information. I have heard good things about ketogenic diets and the benefit it has for Parkinson's. I'm the worst at following a diet, but I hope to one day get the motivation to stick to one. I do cut out a lot of the foods I need to stay away from so I'm halfway there. :-)
I get that too and I never knew what that was from PD. I haven't been diagnosed yet but I'm seeing a neurologist in for my resting tremor I get the heaviness in my face but I always thought it was sinus issues
Honestly, I was kinda relieved to find out I had PD, only cause I finally got an explanation of all the issues I was noticing. Now I make it a point to try and smile at everyone and say hi. I find it a good way to hide the masked face. Best wishes for your doctors visit.
One of the first telltale signs I heard from others is that I always looked mad or uninterested. I had tremors in my hands and leg that I could try and hide the best that I could. Then dyskinesia of my torso was becoming more pronounced that I sought treatment. Primary care Dr. ordered MRI, and then referred me to a neurologist. That was not a good experience since the Dr. was mainly treating dementia patients and tried to prescribe tranquilizers. I refused to take them and I was fortunate to schedule an appointment with a movement disorder specialist at the Mayo clinic. That appointment was scheduled 4 months out and is coming up next week. I look forward to getting a a definitive diagnosis and a treatment plan going forward. Thanks for sharing your experiences. Great to know that we are not in this alone.
So glad to come across your PD video on "mask face." I'm coming up on 3 years diagnosis this fall. It was a tough time during covid dealing with my own denial of what deep down i knew wasn't right and getting worse--left side dragging/weakness (had a convenient foot surgery cover for that one!), hand tremor, stuck feet, balance issues, and bradykinesia. Although medication made a vast improvement, a few months ago mask face showed up. I had been thinking, I'm just getting older and this has to happen to most of us as we age, but started reading that it is another of those darn PD symptoms. My face has lately been feeling like it is heavy and hanging first thing in the morning. So, of course have added face yoga to my daily routine. Ha! Makes me laugh thinking what we do to keep our happy communicating on the outside too. Every mirror I pass brings on the face stretch exercising and wide smiles! I'm sure we can all relate. I'm still working for a bit longer and in person staff meetings are a big challenge trying to keep the corners of my mouth in a slight smile for hours. You let your guard down for a few seconds and bam--bored, flat face appears! Sometimes I want to just tell my colleagues about PD, but then I don't want the pity or the "Why are you still working with PD?" questions. The struggle is real, but working is a good thing for now and motivating. Keep smiling!
Thanks for stopping by! Face yoga...love it. I'm open about my PD at work. Luckily, no one treats me different or gives me any pity. I don't mind sharing symptoms cause I feel like I'm educating people on the symptoms. If I would have been aware of the symptoms...I would have diagnosed myself much sooner (yeah, before the doctor. lol). I do understand people wanting to stay private about it too. I also understand the "trying to keep a smile" approach. I tend to do that when I'm walking the around the office or the halls. It's always nice when I get a smile back too. I'm glad you're still working. Wishing you the best!
I was diagnosed with PD about four years ago and many years before then people would tell me I should smile more. I have posted a few videos on TH-cam and people would comment "...don't be so sad", When people comment about my Parkinson's Face I just tell them I have Parkinson's and that is one of the many symptoms.
Thank you for your information about The parkinson face. I am lucky that I don't seem to have this problem, one of the few I don't have, along with the rest of the Parkinson's problems that I do have. Mine are dificulty with balance, walking, losing my voice and internal problems. Hope to see more often nowv that I have discovered you.
Thanks so much for your video content. I love how you're learning, and just keepin' it real, with the good and the not-as-good. Keep it up, please. You've sorta inspired me to maybe do some videos, too. We'll see!
Just found this. So glad to see just small insight as to how this condition can affect others reactions. Reality is, affects each of us in various ways. And is constantly changing. You look so young. Thank you for sharing your journey..
Beautiful smile only comes out for humor and good thoughts . Dont have ro be smiling all the time . That phrase of why you look mad has been going since a teen for me
I saw myself in a video and that was the first time I saw my masked face in action! I know in that moment I was happy and having a great time. My face said otherwise. It takes a lot of energy to think about my facial expressions on top of everything else. Totally relate 🫶🏻
Thanks for sharing. I think I’ve reached the point that I’ve stopped caring. I developed a habit of pressing my lips together to hide the stern look. Then I noticed in my videos that I do it all the time and now that bothers me. So I’m trying to stop. I’d rather have the masked face!🤣
Parkinson's has not taken away your beauty or your beautiful smile !!
Awww, thank you.
Am I boring you? Are you trying to look tough? Why are you so angry all the time? These are questions I heard repeatedly from co-workers, friends and family before being diagnosed with PD. It was irritating! However, it all makes sense now. The movements that are second nature to others require those of us with Parkinson’s to actively think about something as simple as a smile. Thx for another great video!
Thanks for sharing. Before PD, I would have never imagined that one day I would have to actively think about facial movements. It's amazing how much PD effects the body.
Great video
❤
I had a young fella say to me, "would it kill ya to crack a smile!" I thought, but I am smiling how come he cant see that? I got a look in a mirror, and saw the problem.
I have been practicing in front of the mirror, so I know what my conscious movements look like so I can make the right expression.
Good attitude to have. In the months leading up to my diagnosis I had customers making strange faces at me reacting to my expression, it was perplexing but now I’m conscious of it and try to remember to smile as well, it doesn’t always work though. Just one of the many battles we face.
Yes, it is challenging. There's facial exercises for PD that help with the rigidity. I likely won't be consistent with those...but I'm going to try to remember to do them from time to time.
There are a whole bunch of us who truly appreciate that you share your true thoughts and feelings as you go through this.
Your attitude to stay positive is admirable!! I'm sure it's not always easy
Thank you so much for the feedback. It's a little bit of a struggle. I do my best not to go into pity party mode and for the most part I've been doing really good with that.
Thanks, your video was really moving. Keep smiling, you have a beautiful smile.
Thank you!
Sometimes when I see someone they have a cold expression on their face. I'm like, why are they looking at me like that? Then I realize that I'm looking in the mirror, that they are giving me a cold stare because that's what I'm exuding. This never happened in my life until my diagnosis. All my life I was a smiling person. Even got picked on as a kid because I smiled all the time. But hypomimia took me over, and apathy, and fatigue, etc. etc. :(
I try to make a point to force a smile and say hi when I see people. It tends to make me feel better when they smile and respond. Makes me feel like my face doesn’t look as grumpy. I also make it a point to get out and do fun things to fight the apathy (hang out with friends, go ride my bike, go to parks, play the piano, exercise, etc.). Praying has helped. I just changed my state of mind….I refuse to let myself get depressed. I hope you can find a way to get yourself in a better place. You’ve got this.
I appreciate your authenticity and vulnerability 😊
Dig the elephant too.
Thank you!
Superficial comments like that are lame!! It would be like someone saying about me the woman who owned the bar and has a tremor!? Whoever makes these kind of comments ignore what matters, character and kindness, being real, and you’ve got all that and more in spades!!! ❤😘🙌
Aww, thanks girlfriend. Yeah, apparently this lady is not well liked. lol
I get told by colleagues that I look like I’m constantly in a bad mood but I’m actually not i now know that it’s a symptom of my Parkinson’s disease. I’m newly diagnosed on Tuesday it will have been a month since my diagnosis. So I’m just trying to navigate these new waters ahead of me. Thank you for telling everyone what the medical term is for mask face.
You’re welcome! I wish you the best on your journey.
😂 de de
I'm a medical student, and your content is more helpful and humanizing than our presentations in class. It really helps it stick. Thank you for sharing your experiences.
Thank you so much for the feedback. I’m so glad I can be helpful. Best wishes.
Thanks!! Yes, pushing ourselves to be involved and address things like the Mask Face, can only help us stay as strong as possible. One thing I've also learned from 23 years in AA recovery is that Acceptance is a necessity!
Thanks for sharing.
I totally agree! I will say that if you saw my face right now you would probably think she doesn’t agree. Lol. I, too, have to consciously tell my face to smile. My saving grace right now is I laugh a lot. So, that signals enjoyment to my friends and family. Thank you so much for sharing!!!❤
Awesome....keep on laughing! 🙂Thanks for sharing as well.
Please, everybody. Look into high dose B1 therapy. My wife's on it. I believe it's helping her immensely.
Hi John, that's interesting... However, on the B1 bottle it states take one pill per day? (250mg) How much is she taking?
I like what you said. I think like you do. It's my way of life now. And I am winning this happiness battle. ❤
That’s awesome
You are a beautiful woman, love your attitude, heart and advise. God bless you! =)
Thank you!
I refer to it as my zombie look, or if I'm having a really bad day with my Bradykinesia, I see myself as "dead man walking." I often wear sunglasses on those days to try and conceal it somewhat.
You go from "dead man" to really cool. 🙂
Hi Michele, love your positive outlook on life, but clearly people need more education about Parkinson's. Thank you for sharing. I got to learn a new term today as well! Awesome😀😀😁😁😗😗
Thanks! Glad you learned something as well. 🙂
Mmmm
#
Decades ago my boss told me I always looked mad. I asked her to clarify and she thought about it, finally saying "your face is always red." I told her "I'm usually hot." I think she didn't know how to describe it. This was long before I ever thought Parkinson's. No tremors. Can one have that sort of symptom so far back? I'm still not dxed w Parkinson's. I have Essential Tremor as a dx, but there's more to it than that.
Like you, I feel I am giving myself an in-real-life talking guide about navigating life, looking at myself from the outside in. I will add that I have Aspbergers, a late-in-life dx which explains a lot of my life. I feel detached from my life, as though I'm watching a movie. Outside in.
I also wonder how far back the symptoms started really showing. The comments about my face go pretty far back. Thanks for sharing. I wish you the best.
U know im 42 ans im starting to notice things like i have a hard time standing , not falling back, twitching, steps...i feel rigid..i don't really give a shit, u know? Im me .if these things happen, well i hope i don't split my head open but im ok otherwise. Im not worried. I stand knees bend. Being on the phone is certainly the most balancing trouble but whatever.. its life. All the experience. My friends have all been dead from opioid epidemic so im doing great just being here
There’s always a bright side! I’m glad you’re leaning towards that perspective. I wish you the best.
Relate so hard to this. I am a similar age to you and know i look like Im blank / Miserable
Thank you. I'm not alone. It's hard to smile sometime and I notice that I am a little stiffer on one side.
I saw a video on you tube somewhere that shows face exercises to do. It may be worth looking for something like that.
Some people are just plain rude. Don't worry about what other people think.
Was recently laughed at by a table of people during off-time at a birthday party... "I'm not sure what he's been having but I want some!" she said. I replied that "it's Parkinson's Disease and she's welcome to it." Definitely one way to quieten a group! 😂
It’s unfortunate that some people don’t think before they speak. Hopefully they learned a valuable lesson. I love educating people on Parkinson’s. I’m very open about my Parkinson’s. The more people know the less that kind of stuff happens.
@@SDWP IKR, I knew very little about PD pre diagnosis... It was just that thing old people got that makes them shake!
Exactly! It is what it is!! True! Thx for sharing. I get the masked look when the sinimet wears off. No expression, facial muscles relaxed. Oh! Guess what?? I bought head gear to and will try sparring in the ring tonight!! See you soon ❤
I'm so grateful for Sinimet! Oh nice! Have fun!
Amen 😶.
I think I have parkinson's I have the shakes quite ofter as I age. I had a major stroke in '99. Also I had seizures but I hasn't one in two years, my lips move around before I take my meds (seizure meds) but they work for me. Oh I didn't mention why I had the stroke I abused alcohol, did Michael f. Fox say that abuse alcohol causes his?
I'm not sure if it causes PD. I'm going to guess that it doesn't help matters though. You should definitely see a neurologist to see what is going on. Wishing you the best.
@@SDWP I had an appointment for that but she canceled it. My mother in law took us, it was 2018 maybe or 19. Another one said he said the shakes they were seizures but we didn't agree on that. Oh boo I live with the shakes around 20 years now. Thank you for commenting back.
@@andrewbrumagen3479 You're welcome.
I saw lots of natural smiling on you during the video, looks great.
I try. Thanks!
You are fantastic. Thank’s for the info. My face is similar. We Americans women are expected to smile all the time.
Thanks! It does feel that way. Best wishes!
I am glad to come across your channel. Thanks for spreading the information, inspiring others and motivating. Is it possible to connect to you as it will be beneficial for me as I am recently diagnosed with YOPD.
Thank you for the kind words. I'm sorry to hear about your recent diagnosis. I have a lot going on, but I'm good at responding here in the comments. Best wishes.
I don’t know why your video came up, but I have to tell you about Dr Matt Phillips, a neurologist from Waikato hospital, New Zealand. He has published research on a study with Parkinsons patients where he had success with a ketogenic diet and fasting I believe. I have been watching a lot of interviews with him on TH-cam lately because I have an acquaintance who is just been diagnosed with dementia. according to Dr Phillips Parkinsons Alzheimer’s Huntington’s are all the result of mitochondrial dysfunction and can respond to metabolic therapies. I hope you look into this.
Thank you for the information. I have heard good things about ketogenic diets and the benefit it has for Parkinson's. I'm the worst at following a diet, but I hope to one day get the motivation to stick to one. I do cut out a lot of the foods I need to stay away from so I'm halfway there. :-)
I get that too and I never knew what that was from PD. I haven't been diagnosed yet but I'm seeing a neurologist in for my resting tremor I get the heaviness in my face but I always thought it was sinus issues
Honestly, I was kinda relieved to find out I had PD, only cause I finally got an explanation of all the issues I was noticing. Now I make it a point to try and smile at everyone and say hi. I find it a good way to hide the masked face. Best wishes for your doctors visit.
One of the first telltale signs I heard from others is that I always looked mad or uninterested. I had tremors in my hands and leg that I could try and hide the best that I could. Then dyskinesia of my torso was becoming more pronounced that I sought treatment. Primary care Dr. ordered MRI, and then referred me to a neurologist. That was not a good experience since the Dr. was mainly treating dementia patients and tried to prescribe tranquilizers. I refused to take them and I was fortunate to schedule an appointment with a movement disorder specialist at the Mayo clinic. That appointment was scheduled 4 months out and is coming up next week. I look forward to getting a a definitive diagnosis and a treatment plan going forward. Thanks for sharing your experiences. Great to know that we are not in this alone.
So glad to come across your PD video on "mask face." I'm coming up on 3 years diagnosis this fall. It was a tough time during covid dealing with my own denial of what deep down i knew wasn't right and getting worse--left side dragging/weakness (had a convenient foot surgery cover for that one!), hand tremor, stuck feet, balance issues, and bradykinesia. Although medication made a vast improvement, a few months ago mask face showed up. I had been thinking, I'm just getting older and this has to happen to most of us as we age, but started reading that it is another of those darn PD symptoms. My face has lately been feeling like it is heavy and hanging first thing in the morning. So, of course have added face yoga to my daily routine. Ha! Makes me laugh thinking what we do to keep our happy communicating on the outside too. Every mirror I pass brings on the face stretch exercising and wide smiles! I'm sure we can all relate.
I'm still working for a bit longer and in person staff meetings are a big challenge trying to keep the corners of my mouth in a slight smile for hours. You let your guard down for a few seconds and bam--bored, flat face appears! Sometimes I want to just tell my colleagues about PD, but then I don't want the pity or the "Why are you still working with PD?" questions. The struggle is real, but working is a good thing for now and motivating. Keep smiling!
Thanks for stopping by! Face yoga...love it. I'm open about my PD at work. Luckily, no one treats me different or gives me any pity. I don't mind sharing symptoms cause I feel like I'm educating people on the symptoms. If I would have been aware of the symptoms...I would have diagnosed myself much sooner (yeah, before the doctor. lol). I do understand people wanting to stay private about it too. I also understand the "trying to keep a smile" approach. I tend to do that when I'm walking the around the office or the halls. It's always nice when I get a smile back too. I'm glad you're still working. Wishing you the best!
I was diagnosed with PD about four years ago and many years before then people would tell me I should smile more. I have posted a few videos on TH-cam and people would comment "...don't be so sad", When people comment about my Parkinson's Face I just tell them I have Parkinson's and that is one of the many symptoms.
That's great that you let them know. I was clueless about Parkinson's until I had it. Best wishes.
Thank you for your information about The parkinson face. I am lucky that I don't seem to have this problem, one of the few I don't have, along with the rest of the Parkinson's problems that I do have. Mine are dificulty with balance, walking, losing my voice and internal problems. Hope to see more often nowv that I have discovered you.
Sorry you are dealing with those symptoms. Wishing you the best.
Thanks so much for your video content. I love how you're learning, and just keepin' it real, with the good and the not-as-good. Keep it up, please. You've sorta inspired me to maybe do some videos, too. We'll see!
Thank you. I'm glad I could inspire you. Best wishes
found your channel thanks to jeremy
I ve been having PD for two years now
thanks for sharing
from montreal canada
Thanks for sharing. He is pretty awesome! Best wishes.
wow, you are an inspiration! thank you for sharing your experiences and staying positive!
You are so welcome!
Just found this. So glad to see just small insight as to how this condition can affect others reactions. Reality is, affects each of us in various ways. And is constantly changing. You look so young. Thank you for sharing your journey..
So true. Thank you for the young compliment. :-)
Beautiful smile only comes out for humor and good thoughts . Dont have ro be smiling all the time .
That phrase of why you look mad has been going since a teen for me
Thanks! I agree! It’s too much work to be smiling all the time.
❤
Thank you for the information
You're welcome
STAY STRONG! a cure for PD is just around the corner!
👊🤞
I wish but PD doesn't define me.
looks like a normal face to me... most people dont walk around smiling
Thanks! I thought it was normal too until people kept asking me, “what’s wrong?” It became a pet peeve lol
I saw myself in a video and that was the first time I saw my masked face in action! I know in that moment I was happy and having a great time. My face said otherwise. It takes a lot of energy to think about my facial expressions on top of everything else. Totally relate 🫶🏻
Thanks for sharing. I think I’ve reached the point that I’ve stopped caring. I developed a habit of pressing my lips together to hide the stern look. Then I noticed in my videos that I do it all the time and now that bothers me. So I’m trying to stop. I’d rather have the masked face!🤣