I discovered these panels a few months ago and I am so happy I did. I was diagnosed right in the middle of the pandemic and the local Parkinson’s group is just starting up an in person support group. I have one friend that also has Parkinson’s and we joke about being a support group of two. I just want to thank you all for sharing you are a lifeline that many of us need. It is so encouraging to hear the experiences of people going through a similar journey. Thank you, thank you , thank you.
17:29 So I have watched a lot of vids re: PARKINSON. Was diagnosed few months ago when I could hardly walk. Still, life is difficult. I am glad to hear problems. For,awhile, just heard from people how they were going PD and smiling. Drove me crazy. I realized that it is tough for everyone. More to others. Got through addiction and alcohol with help from others. Here I go through this. Appreciate the help. Thanks
I’m new here and I love your discussions! You are REAL and FUNNY and HONEST and AMAZING! I’ll be tuning in monthly. My husband has PD and I’m just here to learn and get some tips to help both of us. Thank you thank you!
I feel that way sometimes, with my face, even before I realized people just thought I wasn't responding to them or didn't care about them or something. I never enjoyed being told to smile, unnaturally when I knew I was smiling enough. Some of it.. sometimes... now I realize is my face just looking like there's no expression. I try to tell people my feeling about them to help them know how I feel in the moment in case they can't really see it on my face. I try enough to smile, won't put up with the harassment of a person continually try to monitor my smile to their specifications when it's some crazy unnatural thing they're trying to control. I had a horrible experience renewing an ID the time before last, because I couldn't get my mouth and eyes simultaneously do what the picture person wanted them to do (to both be open just a certain amount) and it became more and more difficult as the clock was ticking, with an implication that I couldn't get my ID after the already herculean effort to get to the state office and wait forever, trying to keep track of all my documents, which I can't see when they are out of my hands, and having a difficult time getting the person to tell me where they are, or put them back in my hands, in a crowded room of strangers walking all around. I asked for the supervisor and she (the photographer) said she was, the supervisor, and I asked if someone working there could come hold my face in the position required. It was apparently their photo software perimeters not working for how they were programmed. She said the angles of my face threw too many shadows on the parts of my face they wanted lit. I was standing exactly where they wanted me to stand and everything. Was trying very hard to do what they wanted. I really was unable to stop myself from crying, mostly from just the stress of something that, "who knew", could be so difficult. (I just tried to edit several of my typos in this) :) I was relieved they wanted everyone's face to be neutral next time. I never liked having my picture taken, even as a little kid. I try to to remain calm and get it over with.
I can't believe how absolutely ridiculous that was for you. I'm sorry you have to deal with situations like that. I also LOVE that you "asked if someone working there could come hold my face in the position required." I'd like to think you taught them something that day, even though that shouldn't be your responsibility.
Today I have to go into an office and make my signature probably 42 times, and seem to be congenial even though my rent is going up again, and it was already overwhelmingly difficult to barely make all year. My signature in an uncontrolled situation is hard to not freeze in the middle of. It would help if I could hear Sir Duke in the background. I might preload it in my music app, and see if they will let me use it
@@davisphinneyfdn I did it too! :) I said it might help me be faster, and the person lining my stencil up was on board! Definitely helped. I have to switch up beats each day to what will work after I've slept again. :)
@@laurietrepanier4655 I'm just catching up with you tube today. Trying to get a bunch of offline things done that all expire and have to be renewed every year as soon as business opens again in January. I meant to look up your possible abbreviations of what you're dealing with, but what ever it is, welcome!
@@laurietrepanier4655 Hugs. Something gets us all sooner or later. Meanwhile we're still here. We might as well try to have fun however we can as we're dealing with it. 🤗
My speech is hard to get anyone to understand the first 6-8 hours after I wake up. My mobility is kind of like my speech. The longer I stay up, the closer I start to resemble my previous baselines of movement and enunciation. I can sometimes sing better than I can talk, if I'm hearing any random music, with a great rhythm section. Some days, even with that hack, it takes me awhile. Other days I'm surprised to quickly come on. I consistently need a lot of postural support no matter what. I've arranged everything for furniture and wall walking, and sink and bathtub perching. 😄
@@laurietrepanier4655 Wall and furniture dancing when I can. 💃🤪😅🍀 Trying so hard to get showered and dressed today. Afraid the pipes will be too apt to freeze the next three days. Why I'm trying to get it done, is so I can stand to be fully dressed in layers indoors. I have a feeling I might need to let someone visit me, and am just trying to reduce the stress of being mostly nude and unable to leap to the door, plus un-showered every time someone surprise knocks. It's usually easier for me to be undressed so I can change positions into bed a third of the time off and on, between chores. It's just tougher to juggle the balance of positional changes when its like a freezer in here. I usually have to rest between the shower and getting dressed. Just trying to get a ton of stuff done today that I know I need substantial shoes on for. Camping out at home, like I'm in some mountain man movie, doing piles of yuppie paperwork without yuppie money. Trying to stay a step ahead of being evicted for several years now. 😄 "Send In The Clowns." Think I'm gonna have to put on Diana Ross, to shower. "Ain't No Mountain' high enough." 🎵🎵🎶
@@splashesin8 I live in the Seattle area.where do you live? It's 23 degrees here. Sounds very cold where you are. At least I have warm water. My husband is trying to take care of his 87 yr old mom and me.he is doing a good job. It's not easy. Laurie
@@laurietrepanier4655 I'm actually in Abilene, Texas. It is currently 22° with the windchill at 10° right now. Wind is out of the North at 13 mph. My dad & brother are having it colder in Colorado right now. They are at 0° with their windchill at minus 10°. They are not to far from Lafayette & Boulder Colorado. They been trying to move all their stuff for a few months now. It's just become impossible where they've lived for thirty years. They haven't had hot water since July, and both were in the hospitals four different times each all year. They are trying to get back to Texas near my dad's brothers.
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Thank you for thé inspiring talk everyone like it.
I really like to watch this panel ,…because it’s relative. I appreciate their honesty .
I discovered these panels a few months ago and I am so happy I did. I was diagnosed right in the middle of the pandemic and the local Parkinson’s group is just starting up an in person support group. I have one friend that also has Parkinson’s and we joke about being a support group of two. I just want to thank you all for sharing you are a lifeline that many of us need. It is so encouraging to hear the experiences of people going through a similar journey. Thank you, thank you , thank you.
I am happy to hear that you do have a friend with Parkinson’s for support!
17:29 So I have watched a lot of vids re: PARKINSON. Was diagnosed few months ago when I could hardly walk. Still, life is difficult. I am glad to hear problems. For,awhile, just heard from people how they were going PD and smiling. Drove me crazy. I realized that it is tough for everyone. More to others. Got through addiction and alcohol with help from others. Here I go through this. Appreciate the help. Thanks
I’m new here and I love your discussions! You are REAL and FUNNY and HONEST and AMAZING! I’ll be tuning in monthly. My husband has PD and I’m just here to learn and get some tips to help both of us. Thank you thank you!
Thank you for watching, Lynda. Welcome to our community.
👍🌞
I don't know how I missed this live earlier. It must've been when I was on an incoming phone call.
I feel that way sometimes, with my face, even before I realized people just thought I wasn't responding to them or didn't care about them or something. I never enjoyed being told to smile, unnaturally when I knew I was smiling enough. Some of it.. sometimes... now I realize is my face just looking like there's no expression. I try to tell people my feeling about them to help them know how I feel in the moment in case they can't really see it on my face. I try enough to smile, won't put up with the harassment of a person continually try to monitor my smile to their specifications when it's some crazy unnatural thing they're trying to control. I had a horrible experience renewing an ID the time before last, because I couldn't get my mouth and eyes simultaneously do what the picture person wanted them to do (to both be open just a certain amount) and it became more and more difficult as the clock was ticking, with an implication that I couldn't get my ID after the already herculean effort to get to the state office and wait forever, trying to keep track of all my documents, which I can't see when they are out of my hands, and having a difficult time getting the person to tell me where they are, or put them back in my hands, in a crowded room of strangers walking all around. I asked for the supervisor and she (the photographer) said she was, the supervisor, and I asked if someone working there could come hold my face in the position required. It was apparently their photo software perimeters not working for how they were programmed. She said the angles of my face threw too many shadows on the parts of my face they wanted lit. I was standing exactly where they wanted me to stand and everything. Was trying very hard to do what they wanted. I really was unable to stop myself from crying, mostly from just the stress of something that, "who knew", could be so difficult. (I just tried to edit several of my typos in this) :)
I was relieved they wanted everyone's face to be neutral next time. I never liked having my picture taken, even as a little kid. I try to to remain calm and get it over with.
I can't believe how absolutely ridiculous that was for you. I'm sorry you have to deal with situations like that. I also LOVE that you "asked if someone working there could come hold my face in the position required." I'd like to think you taught them something that day, even though that shouldn't be your responsibility.
Today I have to go into an office and make my signature probably 42 times, and seem to be congenial even though my rent is going up again, and it was already overwhelmingly difficult to barely make all year. My signature in an uncontrolled situation is hard to not freeze in the middle of. It would help if I could hear Sir Duke in the background. I might preload it in my music app, and see if they will let me use it
Great idea!
@@davisphinneyfdn I did it too! :) I said it might help me be faster, and the person lining my stencil up was on board! Definitely helped. I have to switch up beats each day to what will work after I've slept again. :)
Is there a support group in Asheville Nc?
Hi Ali - I would try them: www.asheville.com/directory/parkinsons-support-group-of-asheville/
Please let me know if you got my message Audrey.
Thank you
has anyone tried photobiomodulation to help live better? red laser or red light therapy
I don't know anything about the red light stuff, except traffic lights 😅, just saying hi Norman. traffic light 🚦 trauma emoji, 😱
Hi Laurie, 😊
Hi Audrey. Thank you for reaching out.
@@laurietrepanier4655 I'm just catching up with you tube today. Trying to get a bunch of offline things done that all expire and have to be renewed every year as soon as business opens again in January. I meant to look up your possible abbreviations of what you're dealing with, but what ever it is, welcome!
@@splashesin8 it is Multiple System Atrophy. It's a bad terminal disease.it affects the cerebellum. Balance and speech are affected.
@@laurietrepanier4655 Hugs. Something gets us all sooner or later. Meanwhile we're still here. We might as well try to have fun however we can as we're dealing with it. 🤗
I'm new here too. I isolate. I have MSA-C someone please reach out to me. My speech is poor. I'm not very mobile.
Thank you
My speech is hard to get anyone to understand the first 6-8 hours after I wake up. My mobility is kind of like my speech. The longer I stay up, the closer I start to resemble my previous baselines of movement and enunciation. I can sometimes sing better than I can talk, if I'm hearing any random music, with a great rhythm section. Some days, even with that hack, it takes me awhile. Other days I'm surprised to quickly come on. I consistently need a lot of postural support no matter what. I've arranged everything for furniture and wall walking, and sink and bathtub perching. 😄
@@splashesin8 I also wall walk. If I don't I will fall flat on my face!
@@laurietrepanier4655 Wall and furniture dancing when I can. 💃🤪😅🍀 Trying so hard to get showered and dressed today. Afraid the pipes will be too apt to freeze the next three days. Why I'm trying to get it done, is so I can stand to be fully dressed in layers indoors. I have a feeling I might need to let someone visit me, and am just trying to reduce the stress of being mostly nude and unable to leap to the door, plus un-showered every time someone surprise knocks. It's usually easier for me to be undressed so I can change positions into bed a third of the time off and on, between chores. It's just tougher to juggle the balance of positional changes when its like a freezer in here. I usually have to rest between the shower and getting dressed. Just trying to get a ton of stuff done today that I know I need substantial shoes on for. Camping out at home, like I'm in some mountain man movie, doing piles of yuppie paperwork without yuppie money. Trying to stay a step ahead of being evicted for several years now. 😄 "Send In The Clowns." Think I'm gonna have to put on Diana Ross, to shower. "Ain't No Mountain' high enough." 🎵🎵🎶
@@splashesin8 I live in the Seattle area.where do you live? It's 23 degrees here. Sounds very cold where you are. At least I have warm water. My husband is trying to take care of his 87 yr old mom and me.he is doing a good job. It's not easy.
Laurie
@@laurietrepanier4655 I'm actually in Abilene, Texas. It is currently 22° with the windchill at 10° right now. Wind is out of the North at 13 mph.
My dad & brother are having it colder in Colorado right now. They are at 0° with their windchill at minus 10°. They are not to far from Lafayette & Boulder Colorado. They been trying to move all their stuff for a few months now. It's just become impossible where they've lived for thirty years. They haven't had hot water since July, and both were in the hospitals four different times each all year. They are trying to get back to Texas near my dad's brothers.
Sree, 🤣❣️ Oh no. Not even Seven Brides For Seven Brothers? How 'bout Shenandoah... "Next To Lovin'I like Fighting Best."