Kevin, I appreciated your thoughts about pushing the limits of your disability. I was diagnosed with Parkinson’s eleven years ago and my mindset has always been to cope with the losses. I am now thinking of pushing back a little. Love to you all.
My father lived 14 years after he was diagnosed with Parkinsons, and my husband was diagnosed with the disability 5 years ago. I ask what does this mean ? What is the probability of having to deal with 2 cases in my lifetime? I think it means that there might be something about it that I am called to discover. So I am working through the challenges with my husband and listening to others who are affected. This discussion is so helpful for me. Thank you !
Your experience isn't the most common, but it's also not the first we've heard of people having multiple very close relationships with Parkinson's. Your understanding and experience will hopefully be a great support to you and your husband moving forward. Do you participate in our Care Partner Meetup? davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/
Brian, thanks so much for sharing that very personal memory. My siblings have been totally loving and support me in all ways. It’s some of my children that will not accept the changes in me and berate me for them. It has broken my heart and created well of sadness in me that feels bottomless. The good news is that three of the six remain close and supportive. You sharing that pain made me feel less alone. Thank you.
I loved this podcast today, so many things resonated with me. You guys are my family and help me to not feel alone. To know there are young(ish) women out there like me who are fit, active, living there lives with vulnerability is a great comfort. I used to fly paragliders, climb mountains, run, mountain bike, pot hole, and loads more. I had a super quick 10 km time. Last year I had my left hip replaced 2 months before being diagnosed. That was tough. I am also menopausal (thank God for hrt). The thing I am really enjoying is learning what my new body can do. I started contemporary dance and can now skip and clipity clop like a horse. For me the vulnerability comes not in public (I don’t care what other people think) but finding my body has changed. Recently, my left middle finger has started to lock out and my hand is getting painful. I have discovered some exercises that help and know that playing my guitar will also help with the fine motor skill. I had stopped (long story). I had thought this might be arthritis, so that’s Kat and Kevin for sharing your experiences. Robyn, well done for staying on your bike. In France they definitely have a different perspective on safety. I spent a lot of time flying there in very strong conditions. Most other countries would have stopped the flying. In France risk is upto the individual. Interestingly, the accident rates are low. I personally like having the freedom to chose what I’m comfortable with, unlike the UK.
Thank you all for talking so openly about you vulnerability, it helps me a lot accepting myself. I am from South Africa and we have only one very good PD doctor in the whole country so I dive deep in the Davis Phinney foundations videos for tips and help. Thanks again for sharing .
I would like to sign up for a mentor and to get the link to watch the next meet up live . I have watched them since getting diagnosed and found them helpful and hopeful. Thanks.
Thanks for your comment and for following along with our Meetup! You can search through our full list of ambassadors here: davisphinneyfoundation.org/ambassador-search/ And you can sign up to receive the live viewing link here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
I still am surprised when someone recognizes me. ...and kind of still flirts. That said, it's still very overwhelming when a person cannot understand that sometimes when I am out all day doing something that has to be done, I usually just have a few consecutive following days where I really am too sick to do much of anything, even if I had a ride. It takes a few days to recover from the effects of dystonia that are unseen by others. The externally visible to maybe a trained person, but the most debilitating effects are internal, and effect my guts, as well as sleep, and lymph flow, if I went all day dressed completely with shoes and socks, and not able to stretch out anywhere horizontally and change to enough different positions and get off my feet long enough, and stripped down to have freer circulation and muscle space, and adequate lipids and electrolytes. It's hard for even Disability In Action acquaintances and friends to recognize, that having a ride won't make me be well enough to attend something if it's too soon after I had to attend another event or basic errand, which simply kicks off the dystonia as soon as I am trying to get ready for bed, from the day of ignoring what I normally would do at home or in private, to mitigate those effects and keep getting more cognitive work done. They don't realize how sleep deprivation and or no break to set my concentration free for awhile, effects my ability to maintain concentration for several days round the clock on stuff I really could use legal or paralegal help with, but cannot really afford that and still have to write out my own protests or defense against problems with the social security administration, and whatever other agencies I keep having to continue to go round and round with. I did not major in law in higher education because that is not something that has ever been a natural love or aptitude of mine. There are skills I have a knack for, but not excited or happy about trying to constantly prove a negative about myself of what all I can't do, every day. ...and that's what anyone helping wants me to do day after day, until strangers are able to grasp that I'm "disabled" enough, so that I can financially survive without needing outside help. I feel like all my functional time has to be used round the clock on trying to beat the clock for any SSI, HUD, etc. It becomes a game that doesn't really enhance my life at all. I just feel worse for still needing help, and like it's somehow criminal to be alive and not superhuman. Editing this again, listening again. I should probably clarify I know, I'm not criminal, every bit as much as I know I'm not superhuman. Sometimes I just get extra sick, and it takes me way longer to get back to what had been par. I know it's overwhelmingly hard for any mostly well person, to be able to fathom. They simply won't, and this isn't their fault that they can't understand it. This doesn't quell the anxiety when I have to keep putting myself back in bed and still haven't had time to finish something I thought I could've several days ago.
@@davisphinneyfdn I am having real issues with constipation and flow through my stomach. That makes it hard to time the medications. I am working on that and I had an easier time at the last practices. As I took a dose close to the need.
I am finding my essential tremors in my hand get worse if I concentrate on the action. As a former film processing manager, I shut my eyes and perform the task as if I was in the dark.
You are my people. Thanks.
I loved this podcast! Especially the discussion about vulnerability and sharing your PD diagnosis with others.
Kevin, I appreciated your thoughts about pushing the limits of your disability. I was diagnosed with Parkinson’s eleven years ago and my mindset has always been to cope with the losses. I am now thinking of pushing back a little. Love to you all.
My father lived 14 years after he was diagnosed with Parkinsons, and my husband was diagnosed with the disability 5 years ago. I ask what does this mean ? What is the probability of having to deal with 2 cases in my lifetime? I think it means that there might be something about it that I am called to discover. So I am working through the challenges with my husband and listening to others who are affected. This discussion is so helpful for me. Thank you !
Your experience isn't the most common, but it's also not the first we've heard of people having multiple very close relationships with Parkinson's.
Your understanding and experience will hopefully be a great support to you and your husband moving forward.
Do you participate in our Care Partner Meetup? davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/
Brian, thanks so much for sharing that very personal memory. My siblings have been totally loving and support me in all ways. It’s some of my children that will not accept the changes in me and berate me for them. It has broken my heart and created well of sadness in me that feels bottomless. The good news is that three of the six remain close and supportive. You sharing that pain made me feel less alone. Thank you.
That sounds horrific Robyn - awful situation to be in , with or without Parkinson’s . Well done for getting through it 👍
I loved this podcast today, so many things resonated with me. You guys are my family and help me to not feel alone. To know there are young(ish) women out there like me who are fit, active, living there lives with vulnerability is a great comfort.
I used to fly paragliders, climb mountains, run, mountain bike, pot hole, and loads more. I had a super quick 10 km time. Last year I had my left hip replaced 2 months before being diagnosed. That was tough. I am also menopausal (thank God for hrt). The thing I am really enjoying is learning what my new body can do. I started contemporary dance and can now skip and clipity clop like a horse.
For me the vulnerability comes not in public (I don’t care what other people think) but finding my body has changed.
Recently, my left middle finger has started to lock out and my hand is getting painful. I have discovered some exercises that help and know that playing my guitar will also help with the fine motor skill. I had stopped (long story). I had thought this might be arthritis, so that’s Kat and Kevin for sharing your experiences.
Robyn, well done for staying on your bike. In France they definitely have a different perspective on safety. I spent a lot of time flying there in very strong conditions. Most other countries would have stopped the flying. In France risk is upto the individual. Interestingly, the accident rates are low. I personally like having the freedom to chose what I’m comfortable with, unlike the UK.
Thanks so much for your comment!
Welcome back guys! I really missed you all!
What a privilege to have a group to share. I am Brazilian, loved, learned and sympatheized a lot with you.Many thanks!
Thank you all for talking so openly about you vulnerability, it helps me a lot accepting myself.
I am from South Africa and we have only one very good PD doctor in the whole country so I dive deep in the Davis Phinney foundations videos for tips and help. Thanks again for sharing .
Thanks for your comment! Reach out to us at blog@dpf.org if you have questions and are having trouble finding resources to help answer them.
Well done Brian - that’s an amazing challenge!! Love it
4:35pm there is something called muscle memory. I can ice skate well with pd. And I'm 70. Just put on the music and off I go. Just like riding a bike
Love Slim Shaky ❤
You are my people
I would like to sign up for a mentor and to get the link to watch the next meet up live . I have watched them since getting diagnosed and found them helpful and hopeful. Thanks.
Thanks for your comment and for following along with our Meetup!
You can search through our full list of ambassadors here: davisphinneyfoundation.org/ambassador-search/
And you can sign up to receive the live viewing link here: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
Ken, I love Barbie movie as well
I still am surprised when someone recognizes me. ...and kind of still flirts.
That said, it's still very overwhelming when a person cannot understand that sometimes when I am out all day doing something that has to be done, I usually just have a few consecutive following days where I really am too sick to do much of anything, even if I had a ride. It takes a few days to recover from the effects of dystonia that are unseen by others. The externally visible to maybe a trained person, but the most debilitating effects are internal, and effect my guts, as well as sleep, and lymph flow, if I went all day dressed completely with shoes and socks, and not able to stretch out anywhere horizontally and change to enough different positions and get off my feet long enough, and stripped down to have freer circulation and muscle space, and adequate lipids and electrolytes. It's hard for even Disability In Action acquaintances and friends to recognize, that having a ride won't make me be well enough to attend something if it's too soon after I had to attend another event or basic errand, which simply kicks off the dystonia as soon as I am trying to get ready for bed, from the day of ignoring what I normally would do at home or in private, to mitigate those effects and keep getting more cognitive work done. They don't realize how sleep deprivation and or no break to set my concentration free for awhile, effects my ability to maintain concentration for several days round the clock on stuff I really could use legal or paralegal help with, but cannot really afford that and still have to write out my own protests or defense against problems with the social security administration, and whatever other agencies I keep having to continue to go round and round with. I did not major in law in higher education because that is not something that has ever been a natural love or aptitude of mine. There are skills I have a knack for, but not excited or happy about trying to constantly prove a negative about myself of what all I can't do, every day. ...and that's what anyone helping wants me to do day after day, until strangers are able to grasp that I'm "disabled" enough, so that I can financially survive without needing outside help. I feel like all my functional time has to be used round the clock on trying to beat the clock for any SSI, HUD, etc. It becomes a game that doesn't really enhance my life at all. I just feel worse for still needing help, and like it's somehow criminal to be alive and not superhuman.
Editing this again, listening again. I should probably clarify I know, I'm not criminal, every bit as much as I know I'm not superhuman. Sometimes I just get extra sick, and it takes me way longer to get back to what had been par. I know it's overwhelmingly hard for any mostly well person, to be able to fathom. They simply won't, and this isn't their fault that they can't understand it. This doesn't quell the anxiety when I have to keep putting myself back in bed and still haven't had time to finish something I thought I could've several days ago.
I seem to have lost my muscle memory and now have to force my fingers to make the chords on my Ukulele.
Does timing your practice/playing with your medication ON times help?
@@davisphinneyfdn I am having real issues with constipation and flow through my stomach. That makes it hard to time the medications. I am working on that and I had an easier time at the last practices. As I took a dose close to the need.
I am finding my essential tremors in my hand get worse if I concentrate on the action. As a former film processing manager, I shut my eyes and perform the task as if I was in the dark.