When things get down and i find myself feeling low ,disconnected, lethargic i put my focus on my faith in jesus, i pray my way out of the down periods ,i read the book of psalms, i sing praise to the Lord nothing else pulls me out of the down times other than my Faith.
All of this today is very relatable. The overwhelming situations where I just cannot seem to handle the same amounts of stuff in the old amounts of time it used to only take. It takes almost four times longer for me to prepare to go out anywhere now for any reason. I can only sometimes cut that corner, in the middle of the night, when less people will have the chance of bumping into me, seeing me, or smelling me. ...and my teeth just keep getting more and more broken while I sleep. Jaw and facial dystonia. Lovely. 😣😖🙁
Hello all! I have been living with Parkinson disease for 9 years now and would like to be able to join in the webinars and or podcasts. I have been tuning in to the plethora of videos that are on RUclips. It seems that these videos/ podcast helped me realize that the support of other Parkinson’s patients…but the one thing that I’ve definitely learned in the past 9 years that NO PERSON that doesn’t have Parkinson’s disease can fully understand the enormous scope of probable symptoms as well as the editable onslaught of side effects from the medication. The support of people that can relate to the conditional symptoms that the Parkinson’s community has to contend with.( Sometimes we ourselves are trying to wrap our minds around the ever changing world of symptoms and medication side effects) . So with that being said , trying to accomplish anything in my world without that level of support is at best extremely difficult. So I would greatly appreciate the opportunity to join in one of the sessions. Thank you Jason Webster
Thanks for your interest, Jason! Anyone is invited to attend our live sessions as an audience member and contribute through the chat. Register here for access: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/ As for our on-screen panelists, we tend to feature members of our ambassador cohort. More on our ambassador program is available here: davisphinneyfoundation.org/ambassador-search/
I hear all of you regarding the emotional blowback from PD. Isolation really increases the down moods which is ironic because it’s so hard to get out and engage. Working on a gratefulness practice.
We love the idea of a gratefulness practices. Doug discusses this from time to time. It can be especially helpful to start the day with focusing for a little bit on gratitude and set the tone for the day.
Any suggestions about how to maintain important relationships without feeling too needy. It’s so hard to reach out when I’m feeling I have nothing to offer except complaints.
Chris Krueger, moderator of the meetup, here. Thanks for your question. I felt drawn to this question and wanted to offer my personal perspective. I imagine each panelist might have something different to say in response , but here's mine: First, I try to ask people questions about what's going on in their lives to avoid saying too much about myself--especially when I feel like I am feeling the heaviness of Parkinson's. (Clearly this is a work in progress). Second, I try to stay connected with people and to have a neutral topic to discuss--not something directly about either of our lives. This helps me to zero in on something other than Parkinson's before I connect with someone, so I don't get stuck on Parkinson's as a topic. Third, when a relationship matters to me and I want it to continue, I try to cultivate a topic of interest with the other person--something of mutual interest that we can return to regularly to maintain our relationship. With some people, this is related to how our lives are going (kids, houses, pets, etc), but with others, its about something else entirely (music, sports, gardening, cars etc.). At the same time, I try to maintain relationships where, if I need to, I can complain about Parkinson's. I am sure that's not easy for my friends and family--and I try to make sure I do the things I say above, too, so that Parkinson's doesn't dominate all parts of our relationship. But the fact is that Parkinson’s is an important part of my life and experience, and even when folks don't ask about it, if it's prominent on my mind and I think it would be helpful to share what I'm dealing with and/or hear their perspectives, I try to trust that that's ok and that an important relationship will persist through the harder moments when I am most challenged by Parkinson's. Some have not done that, but I am glad that most have--even those with many people who have never asked me a question about Parkinson's unless I bring it up.
Im not coping well emotionally or physically. Easily irritated & angry at the drop of a hat...i feel so immature about it all. My anxiety & depression is off the charts anymore. Exhausted & surviving
Thanks for your comment. On the face of it, the first thing is that it's important to discuss these challenges with your care team. They may have ideas that could help you. Also--we hear you, and we understand it can be a challenge to even be as candid as you have been in this comment, especially when things are tough. So thanks for sharing what you did--we hope it was helpful for you to write a few sentences about your experience and that reading it might help someone else feel a little less isolated.
When things get down and i find myself feeling low ,disconnected, lethargic i put my focus on my faith in jesus, i pray my way out of the down periods ,i read the book of psalms, i sing praise to the Lord nothing else pulls me out of the down times other than my Faith.
All of this today is very relatable. The overwhelming situations where I just cannot seem to handle the same amounts of stuff in the old amounts of time it used to only take. It takes almost four times longer for me to prepare to go out anywhere now for any reason. I can only sometimes cut that corner, in the middle of the night, when less people will have the chance of bumping into me, seeing me, or smelling me. ...and my teeth just keep getting more and more broken while I sleep. Jaw and facial dystonia. Lovely. 😣😖🙁
Hello all! I have been living with Parkinson disease for 9 years now and would like to be able to join in the webinars and or podcasts.
I have been tuning in to the plethora of videos that are on RUclips. It seems that these videos/ podcast helped me realize that the support of other Parkinson’s patients…but the one thing that I’ve definitely learned in the past 9 years that NO PERSON that doesn’t have Parkinson’s disease can fully understand the enormous scope of probable symptoms as well as the editable onslaught of side effects from the medication. The support of people that can relate to the conditional symptoms that the Parkinson’s community has to contend with.( Sometimes we ourselves are trying to wrap our minds around the ever changing world of symptoms and medication side effects) . So with that being said , trying to accomplish anything in my world without that level of support is at best extremely difficult. So I would greatly appreciate the opportunity to join in one of the sessions. Thank you
Jason Webster
Thanks for your interest, Jason! Anyone is invited to attend our live sessions as an audience member and contribute through the chat. Register here for access: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
As for our on-screen panelists, we tend to feature members of our ambassador cohort. More on our ambassador program is available here: davisphinneyfoundation.org/ambassador-search/
Blessings! ❤
You help!
Thanks for following along with us! We're here for you.
I hear all of you regarding the emotional blowback from PD. Isolation really increases the down moods which is ironic because it’s so hard to get out and engage. Working on a gratefulness practice.
We love the idea of a gratefulness practices. Doug discusses this from time to time. It can be especially helpful to start the day with focusing for a little bit on gratitude and set the tone for the day.
Any suggestions about how to maintain important relationships without feeling too needy. It’s so hard to reach out when I’m feeling I have nothing to offer except complaints.
Chris Krueger, moderator of the meetup, here. Thanks for your question. I felt drawn to this question and wanted to offer my personal perspective. I imagine each panelist might have something different to say in response , but here's mine: First, I try to ask people questions about what's going on in their lives to avoid saying too much about myself--especially when I feel like I am feeling the heaviness of Parkinson's. (Clearly this is a work in progress).
Second, I try to stay connected with people and to have a neutral topic to discuss--not something directly about either of our lives. This helps me to zero in on something other than Parkinson's before I connect with someone, so I don't get stuck on Parkinson's as a topic.
Third, when a relationship matters to me and I want it to continue, I try to cultivate a topic of interest with the other person--something of mutual interest that we can return to regularly to maintain our relationship. With some people, this is related to how our lives are going (kids, houses, pets, etc), but with others, its about something else entirely (music, sports, gardening, cars etc.).
At the same time, I try to maintain relationships where, if I need to, I can complain about Parkinson's. I am sure that's not easy for my friends and family--and I try to make sure I do the things I say above, too, so that Parkinson's doesn't dominate all parts of our relationship. But the fact is that Parkinson’s is an important part of my life and experience, and even when folks don't ask about it, if it's prominent on my mind and I think it would be helpful to share what I'm dealing with and/or hear their perspectives, I try to trust that that's ok and that an important relationship will persist through the harder moments when I am most challenged by Parkinson's. Some have not done that, but I am glad that most have--even those with many people who have never asked me a question about Parkinson's unless I bring it up.
Im not coping well emotionally or physically. Easily irritated & angry at the drop of a hat...i feel so immature about it all. My anxiety & depression is off the charts anymore. Exhausted & surviving
Thanks for your comment. On the face of it, the first thing is that it's important to discuss these challenges with your care team. They may have ideas that could help you.
Also--we hear you, and we understand it can be a challenge to even be as candid as you have been in this comment, especially when things are tough. So thanks for sharing what you did--we hope it was helpful for you to write a few sentences about your experience and that reading it might help someone else feel a little less isolated.