I've watched and listened to you 2 friends several times. This is the most moving episode I've heard. I'm weeping, listening to how conversations can exhaust you. My husband, who has PD, and I are working to be patient w each other in our conversations. But I never realized how difficult it is for him. Ty for bringing this info to my attention.
We're honored that you are finding value in these episodes. Thanks for listening and sharing your perspective. Do you attend our care partner meetup? davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/
I have a very good friend - inside myself I feel very close to him - who is a former academic mentor and more than 25 years older than me. He never ever mentioned to have Parkinson's. (Besides, I'm a physician like he is a physician, too. But none of us is a neurologist.) Moreover, I've never seen him tremble. But since I know him for more than 18 years now, I've noticed some changes over time in his movements, facial expressions, his general behavior, the way he speaks (changes of voice), and the way he communicates. For example, a short time ago I saw some photos of him online and during this I realised for the first time, that he probably is lefthander. (Which I didn't realise during all the former years!) Concerning communication, there are break(-down-)s appearing between us in that sense that he sometimes suddenly "gets out" just right in the middle of our conversation without any announcement. He just stops messaging. Without there having been a conflict or a difference of opinion, he then simply makes me stand there without resonance - and I feel quite stupid. Sometimes, he even doesn't answer to any of my messages. Which makes me think he's ghosting me and feeling myself as if I would be a dog running after it's owner - of course, this is humiliating. It makes me disappointed and sometimes also angry. Thus, everytime when this happened I asked myself: "Why am I doing this? Let's stop it! This is no sign of friendship. To treat others like this is kind of abusive." But I do not want to make him feeling guilty. Neither do I want to become a pursuer. This is the reason why I mentioned to him that it's ok for me to be told that he doesn't have the time or just doesn't feel like answering. (I never mentioned my suspicion that he could have an illness which perhaps sometimes disables him to answer. Because I do not want him to feel ashamed.) But up to now he has never said that he has no time or that he doesn't feel like answering. So I've always remained in the dark so far. And thus, every time these communication breakdowns happened again, I held back - i.e. I avoided texting him for weeks or months, did not call him, just stayed calm. Moreover, it's never him who gets the ball (of our communication) rolling again - it's always me. During those perios of silence (which are very typical for our conversation since years) my feelings always change: disappointment and anger disappear and instead, I feel a very significant (deep and sometimes overwhelming) kind of grief inside myself. Sometimes, this grief also is accompanied by physical pain. Pain and grief, which I cannot explain in concerns of their origin except by a phenomenon which is named countertransference. (I'm trained in depth psychology.) Another topic is encounters. We haven't met each other for years. Although he often said "Call me when you're in town again, then we will have some coffee together!" Hence, I did - I called him. And every time I did, we made an apointment, which he than canceled "last minute". (Seeming to me as if he is fleeing.) When I began to wonder about this strange changes of his behaviour - in former times, when I was his student, he's been one of the most reliable and approachable people I know - Parkinson's came to my mind. This was the case when I wondered about why he had lost his formerly so very, very heartwarming (!) smile. (The last time I saw him his face seemed to be frozen.) Since Parkinson's came to my mind, I regularly whatch the videos (especially the monthly Meetups) of the Davis Phinney Foundation. By whatching them and listening to all the members of the panel, I learn a lot! And now, I'm pretty sure that Parkinson's - probably YOPD - could be the reason for his changes and for me being that much afraid of loosing a friend "to the unspeakable". Dear Kat and dear Heather, thank you both (and thanks to all the other members of the Parkinson's Meetups, too) for your openess!
It takes a while to summon the words to come out from the muscles of my face that have not really had the chance to animate yet, because I was working on just getting myself to start the walking part over from scratch like groundhog day every time. I can soak in the incoming phone emergency alert and begin the triage of whatever creative way to deal with what horrible thing is happening this time, but the person who called cannot imagine why I am not rapid fire scripted or might not have even been awake. Also, my voice may be extremely deep, or very high, from what they are used to under closer to ordinary conditions when I had the chance to prepare and get ready like they did before they called me wanting me to be instantly ready to go, and rapidly answering. The assumption is that if I'm not moving, or speaking fast and loud, that I'm not thinking.
thanks for sharing your story. it's important for others to know what experiences like these can look like so we can all work together to communicate more effectively with folks who struggle with speech.
Thanks for reaching out. We strive to help by providing information, inspiration, and opportunities to connect with other people with Parkinson's. Feel free to reach out us at blog@dpf.org for more information
I've watched and listened to you 2 friends several times.
This is the most moving episode I've heard.
I'm weeping, listening to how conversations can exhaust you.
My husband, who has PD, and I are working to be patient w each other in our conversations.
But I never realized how difficult it is for him.
Ty for bringing this info to my attention.
We're honored that you are finding value in these episodes. Thanks for listening and sharing your perspective.
Do you attend our care partner meetup? davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/
@davisphinneyfdn I've joined the PD virtual care partner meetings in my county, which are helpful! Thank you got your concern.
Blessings! ❤
I have a very good friend - inside myself I feel very close to him - who is a former academic mentor and more than 25 years older than me. He never ever mentioned to have Parkinson's. (Besides, I'm a physician like he is a physician, too. But none of us is a neurologist.)
Moreover, I've never seen him tremble. But since I know him for more than 18 years now, I've noticed some changes over time in his movements, facial expressions, his general behavior, the way he speaks (changes of voice), and the way he communicates. For example, a short time ago I saw some photos of him online and during this I realised for the first time, that he probably is lefthander. (Which I didn't realise during all the former years!) Concerning communication, there are break(-down-)s appearing between us in that sense that he sometimes suddenly "gets out" just right in the middle of our conversation without any announcement. He just stops messaging. Without there having been a conflict or a difference of opinion, he then simply makes me stand there without resonance - and I feel quite stupid. Sometimes, he even doesn't answer to any of my messages. Which makes me think he's ghosting me and feeling myself as if I would be a dog running after it's owner - of course, this is humiliating. It makes me disappointed and sometimes also angry. Thus, everytime when this happened I asked myself: "Why am I doing this? Let's stop it! This is no sign of friendship. To treat others like this is kind of abusive."
But I do not want to make him feeling guilty. Neither do I want to become a pursuer. This is the reason why I mentioned to him that it's ok for me to be told that he doesn't have the time or just doesn't feel like answering. (I never mentioned my suspicion that he could have an illness which perhaps sometimes disables him to answer. Because I do not want him to feel ashamed.) But up to now he has never said that he has no time or that he doesn't feel like answering. So I've always remained in the dark so far. And thus, every time these communication breakdowns happened again, I held back - i.e. I avoided texting him for weeks or months, did not call him, just stayed calm. Moreover, it's never him who gets the ball (of our communication) rolling again - it's always me.
During those perios of silence (which are very typical for our conversation since years) my feelings always change: disappointment and anger disappear and instead, I feel a very significant (deep and sometimes overwhelming) kind of grief inside myself. Sometimes, this grief also is accompanied by physical pain. Pain and grief, which I cannot explain in concerns of their origin except by a phenomenon which is named countertransference. (I'm trained in depth psychology.)
Another topic is encounters. We haven't met each other for years. Although he often said "Call me when you're in town again, then we will have some coffee together!" Hence, I did - I called him. And every time I did, we made an apointment, which he than canceled "last minute". (Seeming to me as if he is fleeing.)
When I began to wonder about this strange changes of his behaviour - in former times, when I was his student, he's been one of the most reliable and approachable people I know - Parkinson's came to my mind. This was the case when I wondered about why he had lost his formerly so very, very heartwarming (!) smile. (The last time I saw him his face seemed to be frozen.) Since Parkinson's came to my mind, I regularly whatch the videos (especially the monthly Meetups) of the Davis Phinney Foundation. By whatching them and listening to all the members of the panel, I learn a lot! And now, I'm pretty sure that Parkinson's - probably YOPD - could be the reason for his changes and for me being that much afraid of loosing a friend "to the unspeakable".
Dear Kat and dear Heather, thank you both (and thanks to all the other members of the Parkinson's Meetups, too) for your openess!
Thanks for sharing your story with us! We're glad you've found value in our videos and podcasts.
It takes a while to summon the words to come out from the muscles of my face that have not really had the chance to animate yet, because I was working on just getting myself to start the walking part over from scratch like groundhog day every time. I can soak in the incoming phone emergency alert and begin the triage of whatever creative way to deal with what horrible thing is happening this time, but the person who called cannot imagine why I am not rapid fire scripted or might not have even been awake. Also, my voice may be extremely deep, or very high, from what they are used to under closer to ordinary conditions when I had the chance to prepare and get ready like they did before they called me wanting me to be instantly ready to go, and rapidly answering. The assumption is that if I'm not moving, or speaking fast and loud, that I'm not thinking.
thanks for sharing your story. it's important for others to know what experiences like these can look like so we can all work together to communicate more effectively with folks who struggle with speech.
I asked for a little help for my medicine. I have dystonia parkinson disease. I'm from the Philippines.
Thanks for reaching out. We strive to help by providing information, inspiration, and opportunities to connect with other people with Parkinson's. Feel free to reach out us at blog@dpf.org for more information