Apathy for sure. Nothing fizzes me. Whether I win a billion dollars 💰 or my house burns down. Kinda ok as my health deterioration would drive anyone to the edge. REM Sleep Disorder has become something that happened now and then, now it’s constant. Neurologist has me on a medication for sleeping in order to stop me from jumping out of bed to catch the rabbit I’m chasing in my dreams. Also have had had railings installed on my bed for same reason
Hi Robynn, I am watching this video from Germany. You said that you suffer from problems breathing because of your diaphragm. Since a few weeks I have problems with breathing too and I have that feeling that my diaphragm is pressing against my lung. My Doktor says it has nothing to do with PD. I try to breath deep but the effects are not grat. Have you some advice for me. Take care. XxDoris
Yes it is Apathy! I often say my best hours are in the morning . Well now i know if I had more time to think about my day, i have more time to think of excuses to flake! Lol 😂😂 ! And I have too many people in my life that are nice and don’t hold me accountable because they feel they shouldn’t. I have 2 friends who I try to flake on always!!! I tell them to call me when they are on the way and they don’t, because they have known my past history “ chronic flaker” i not depressed. Im just blah! Thank you for the tips.
My trick is I love dogs so I have two labs and I will always walk them , so that gets me walking and once I start walking I feel better. And I also put a few things on the calendar, so when I get up I know what to do, instead of being confused about what to do or what not to do because I don't really feel like doing anything. I've always been in overachiever and now I make it okay to just do a couple things a day and then do resting items like watching a movie listening to podcast ETC.
We generally feature our ambassadors on the panel. For 2024, we have our slate of new panelists already determined. For more about our ambassador program, visit this web page: davisphinneyfoundation.org/ambassador-search/#1715113278893-932949d5-52d5
A few months back Heather decided to step away from being a member of this panel so she could refocus. Along with Kat Hill, Heather features in The Parkinson's Podcast Unfiltered, which you can find on our UA-cam homepage and on many podcast apps.
My DBS battery pack pulls on my neck still like a tether. It hinders neck mobility & that causes pain and lock ups. The only real issue. I need more slack in the wire!! 🥹
Hi y’all! I was diagnosed in 1998 when I was 38. Have bilateral dbs. Did it early like 2000 and 2002. Currently, I am having issues with chronic constipation and in order to pass anything I have to do an enema every other day usually. My dear husband does the deed for me and I have to have my meals planned and eat in layers because i have become aware of my food layers. Btw, I am a completely transparent person, so please forgive my complete open and honest personality. The enemas have been happening for over a year at least. Every day you can find me on the toilet thanking God for helping me 1.)not miss the toilet when I go to sit on it 2.) thanking God for helping me get the train down the track and out of the station. Sometimes I am sure that my neighbors can hear me. In the last year I have had a breakdown at least once a month. It is like turbocharged menopause , crying, sobbing, like I just had a pet die. I am a spiritual person and thank God for helping me get up every morning and try to make it the best day ever. That sounds corny I know. Also, my throat is starting to close and I am starting to watch very closely to take tiny bites for fear of choking. My voice is a whisper now and when I speak I have to make myself yell, at least it feels like I am screaming and my face looks like I am yelling. Service people give me the strangest looks. I realized that my wire that goes up the left side of my neck is HUGEand I wear scarves everyday and it isn’t as noticeable. I feel that I need to tell everyone that I speak to that I have PD and apologize for my speech. I carry that card around that tells whoever that I am not inebriated, it is PD. On the days I cannot speak I also cannot write . It is so bad that I cannot even read it and just forget my typing skills! I learn and relearn about all this tech stuff (my phone is a major issue). I want to thank y’all for this forum. I would love to share more. I tend to get excited about my particular PD and I love to explain PD to people who know nothing about it. I do get upset that we as pd people have to have 2 doctors for each symptom, like I need 2 pc doctors, because I am finding that the doctors that I use do not know anything about my disease and I want to punch them in their throats. My patience is non existent it seems to me. My friends and relatives say it isn’t true, that I am so sweet and they admire how I handle my pain and this disease. I can laugh about not being able to just crack up in a big belly laugh and this is where the saying laughter is the best medicine. On the rare occasions that I do have a big spontaneous laugh I feel so much better physically, emotionally, and mentally. Oh I am also a heavy sweater. I wake up drenched every morning. My cat is the only living being that wants to be around me. I am so greatful for my care giver, my husband, except when we get in an argument and I don’t want his help but I HAVE to accept his help. PD has taught me to be humble and I see the world in a different way. I am aware that there are people who don’t understand my PD and think I am just taking advantage of my people’s good nature. They don’t realize how hard it is to NOT show the pain that is constant and to consciously think left right left as I walk and I have to watch out and not fall when I go through a doorway because my brain says “go” and my feet say “no!” I actually got stuck in my eye dr’s chair and froze completely because I was kind of upset that the nurse told me my son could come in the exam room with me. I was with my husband 😮 and he isn’t one to care about his skin’s condition. In other words, my wrinkles have taken residence around m my mouth and down my chin like a puppet. I promise that it happened overnight! I have pics that I took a year ago and ones that people have sneaked in that are more recent and I am soooo wrinkly! I will not bend over my husband any more because I think I would scare him to death. I am having more social anxiety everyday and I know stress causes wrinkles and not laughing is also stressful and not being able to be funny because no one can understand me. K have almost convinced my husband that he is losing his hearing and my speech is just a little low and slurred. He is going deaf. Again thank y’all for this forum. If I were speaking to my husband I would show this to him. ❤
Thanks for raising this concern. It is not talked about enough: sometimes DBS hardware can lead to some ongoing discomfort. Many people who have hardware related discomfort tell us it doesn't outweigh the benefits of the treatment, but it's important to talk about all aspects of ANY treatment, so thanks again for your comment.
I miss feeling motivated. I miss being quick witted and spontaneous. Apathy: 'No mountain is too high when you don't give a sh$t about climbing it'. 😐
Apathy for sure. Nothing fizzes me. Whether I win a billion dollars 💰 or my house burns down. Kinda ok as my health deterioration would drive anyone to the edge. REM Sleep Disorder has become something that happened now and then, now it’s constant. Neurologist has me on a medication for sleeping in order to stop me from jumping out of bed to catch the rabbit I’m chasing in my dreams. Also have had had railings installed on my bed for same reason
Thanks for your comment. It is interesting how compelling dreams can be in the context of waking apathy. You aren't alone in this! We're here for you.
A cold shower... I'll give it a try. Thanks Sree! Great episode guys!
Hi Robynn, I am watching this video from Germany. You said that you suffer from problems breathing because of your diaphragm. Since a few weeks I have problems with breathing too and I have that feeling that my diaphragm is pressing against my lung. My Doktor says it has nothing to do with PD. I try to breath deep but the effects are not grat. Have you some advice for me. Take care. XxDoris
Regular deep breathing exercises help me. Google breathing exercises o. U tube!
Wonderful! Enjoyed this meeting so much!
Yes it is Apathy! I often say my best hours are in the morning . Well now i know if I had more time to think about my day, i have more time to think of excuses to flake! Lol 😂😂
! And I have too many people in my life that are nice and don’t hold me accountable because they feel they shouldn’t. I have 2 friends who I try to flake on always!!! I tell them to call me when they are on the way and they don’t, because they have known my past history “ chronic flaker” i not depressed. Im just blah! Thank you for the tips.
I hear you Shree!( sorry if I missed spelled your name)same for me. …
My trick is I love dogs so I have two labs and I will always walk them , so that gets me walking and once I start walking I feel better. And I also put a few things on the calendar, so when I get up I know what to do, instead of being confused about what to do or what not to do because I don't really feel like doing anything. I've always been in overachiever and now I make it okay to just do a couple things a day and then do resting items like watching a movie listening to podcast ETC.
Hi Robin, thanks for sharing these tips and tricks! Sounds like you're working toward a finding a rhythm that works for you.
are all you folks still working ... how do you finance all this treatment .... gov't insurance ....
In this meetup, five of the panelists are still working. The other panelists have some form of government insurance.
How do I become a member of this meetup? I was diagnosed in 2020......
We generally feature our ambassadors on the panel. For 2024, we have our slate of new panelists already determined. For more about our ambassador program, visit this web page: davisphinneyfoundation.org/ambassador-search/#1715113278893-932949d5-52d5
The apathy has increased my empathy
Thanks to all you panelists!
Has anyone tried the ALINKER walking bike?
What are they speaking of?
hey there, this video is about apathy and anxiety related to Parkinson's disease.
where is HEATHER?
A few months back Heather decided to step away from being a member of this panel so she could refocus. Along with Kat Hill, Heather features in The Parkinson's Podcast Unfiltered, which you can find on our UA-cam homepage and on many podcast apps.
My DBS battery pack pulls on my neck still like a tether. It hinders neck mobility & that causes pain and lock ups. The only real issue. I need more slack in the wire!! 🥹
Hi y’all! I was diagnosed in 1998 when I was 38. Have bilateral dbs. Did it early like 2000 and 2002. Currently, I am having issues with chronic constipation and in order to pass anything I have to do an enema every other day usually. My dear husband does the deed for me and I have to have my meals planned and eat in layers because i have become aware of my food layers. Btw, I am a completely transparent person, so please forgive my complete open and honest personality. The enemas have been happening for over a year at least. Every day you can find me on the toilet thanking God for helping me 1.)not miss the toilet when I go to sit on it 2.) thanking God for helping me get the train down the track and out of the station. Sometimes I am sure that my neighbors can hear me. In the last year I have had a breakdown at least once a month. It is like turbocharged menopause , crying, sobbing, like I just had a pet die. I am a spiritual person and thank God for helping me get up every morning and try to make it the best day ever. That sounds corny I know. Also, my throat is starting to close and I am starting to watch very closely to take tiny bites for fear of choking. My voice is a whisper now and when I speak I have to make myself yell, at least it feels like I am screaming and my face looks like I am yelling. Service people give me the strangest looks. I realized that my wire that goes up the left side of my neck is HUGEand I wear scarves everyday and it isn’t as noticeable. I feel that I need to tell everyone that I speak to that I have PD and apologize for my speech. I carry that card around that tells whoever that I am not inebriated, it is PD. On the days I cannot speak I also cannot write . It is so bad that I cannot even read it and just forget my typing skills! I learn and relearn about all this tech stuff (my phone is a major issue). I want to thank y’all for this forum. I would love to share more. I tend to get excited about my particular PD and I love to explain PD to people who know nothing about it. I do get upset that we as pd people have to have 2 doctors for each symptom, like I need 2 pc doctors, because I am finding that the doctors that I use do not know anything about my disease and I want to punch them in their throats. My patience is non existent it seems to me. My friends and relatives say it isn’t true, that I am so sweet and they admire how I handle my pain and this disease. I can laugh about not being able to just crack up in a big belly laugh and this is where the saying laughter is the best medicine. On the rare occasions that I do have a big spontaneous laugh I feel so much better physically, emotionally, and mentally. Oh I am also a heavy sweater. I wake up drenched every morning. My cat is the only living being that wants to be around me. I am so greatful for my care giver, my husband, except when we get in an argument and I don’t want his help but I HAVE to accept his help. PD has taught me to be humble and I see the world in a different way. I am aware that there are people who don’t understand my PD and think I am just taking advantage of my people’s good nature. They don’t realize how hard it is to NOT show the pain that is constant and to consciously think left right left as I walk and I have to watch out and not fall when I go through a doorway because my brain says “go” and my feet say “no!” I actually got stuck in my eye dr’s chair and froze completely because I was kind of upset that the nurse told me my son could come in the exam room with me. I was with my husband 😮 and he isn’t one to care about his skin’s condition. In other words, my wrinkles have taken residence around m my mouth and down my chin like a puppet. I promise that it happened overnight! I have pics that I took a year ago and ones that people have sneaked in that are more recent and I am soooo wrinkly! I will not bend over my husband any more because I think I would scare him to death. I am having more social anxiety everyday and I know stress causes wrinkles and not laughing is also stressful and not being able to be funny because no one can understand me. K have almost convinced my husband that he is losing his hearing and my speech is just a little low and slurred. He is going deaf. Again thank y’all for this forum. If I were speaking to my husband I would show this to him. ❤
Thanks for raising this concern. It is not talked about enough: sometimes DBS hardware can lead to some ongoing discomfort. Many people who have hardware related discomfort tell us it doesn't outweigh the benefits of the treatment, but it's important to talk about all aspects of ANY treatment, so thanks again for your comment.