Thanks for your message. We hear frequently from people who have experienced similar delays in diagnosis. Here is a research article about this topic: bmcprimcare.biomedcentral.com/articles/10.1186/s12875-017-0652-y
"pain makes people self absorbed" thank you for saying that ... also "self absorbed" is a judgement ... if you can't stand up for yourself, you certainly won't be standing up for others either
This was a much welcomed session. I greatly appreciate the transparency in this group. Say if you’re lonely, ask for help, early diagnosis you want to think you can do it all or you can beat Parkinson’s, how unpredictable my Parkinson’s is during the day, hugs and hats off to the care partners who we may be irritated with or unkind to many days when they do not deserve it. Great topic and discussion!😊
I relate so much to starting out hours and hours ahead of appointments trying to get there prepared and hoping I can communicate adequately. It's much more difficult to do that for an all day away event, and to be able to last through it and get back home, for the types of most crucial appointments. I'm starting out six hours ahead of time, because I know that to last all through the journey of the day several more hours, I'm going to have to eat and drink before I set out. I also know that if I have to inopportunely disappear into what will invariably be an uncharted restroom at some point, for awhile, it will always be longer than any one wants to wait for, or can possibly understand, even when they know me somewhat well. Even if the access turns out to be top notch. I try not to worry about how I can get home after something like showing up for some deadline. I do know that after one of those jury duty type of days or something like that, once I have ambled and navigated my way back home, and eventually, been able to sleep, after mitigating the excruciating spasticity, several times, I will be lucky if I can leave my apartment,or shower, ten days later. Ironically these are usually appointments where I have to begin to explain what is so debilitating.
Great group of people, all living with Parkinson’s and ready to tackle any topic to help you. Thanks for joining us for the live event and for tuning in to our CZcams channel. And please, let us know what’s on your mind.
We were married 60 years when he passed away last year. I miss him everyday. We leaned on each other knowing we both were going through this. Most of all he was there when I was having a bad day
Love all of you 💓
I was diagnosed eight years ago.From what I learned I should have been diagnosed twelve years ago.
Thanks for your message. We hear frequently from people who have experienced similar delays in diagnosis. Here is a research article about this topic: bmcprimcare.biomedcentral.com/articles/10.1186/s12875-017-0652-y
Great group 👍
"pain makes people self absorbed" thank you for saying that ... also "self absorbed" is a judgement ... if you can't stand up for yourself, you certainly won't be standing up for others either
Love makes us self absorbed but if we live with a narcissist its soul destroying
I'm excited to learn more too!
PS 👍💋 I really like this channel! ♥♥♥
This was a much welcomed session. I greatly appreciate the transparency in this group. Say if you’re lonely, ask for help, early diagnosis you want to think you can do it all or you can beat Parkinson’s, how unpredictable my Parkinson’s is during the day, hugs and hats off to the care partners who we may be irritated with or unkind to many days when they do not deserve it. Great topic and discussion!😊
I relate so much to starting out hours and hours ahead of appointments trying to get there prepared and hoping I can communicate adequately. It's much more difficult to do that for an all day away event, and to be able to last through it and get back home, for the types of most crucial appointments. I'm starting out six hours ahead of time, because I know that to last all through the journey of the day several more hours, I'm going to have to eat and drink before I set out.
I also know that if I have to inopportunely disappear into what will invariably be an uncharted restroom at some point, for awhile, it will always be longer than any one wants to wait for, or can possibly understand, even when they know me somewhat well. Even if the access turns out to be top notch. I try not to worry about how I can get home after something like showing up for some deadline. I do know that after one of those jury duty type of days or something like that, once I have ambled and navigated my way back home, and eventually, been able to sleep, after mitigating the excruciating spasticity, several times, I will be lucky if I can leave my apartment,or shower, ten days later. Ironically these are usually appointments where I have to begin to explain what is so debilitating.
Great group of people, all living with Parkinson’s and ready to tackle any topic to help you. Thanks for joining us for the live event and for tuning in to our CZcams channel. And please, let us know what’s on your mind.
How about both husband and wife have PD. We have a special set of problems
We were married 60 years when he passed away last year. I miss him everyday. We leaned on each other knowing we both were going through this. Most of all he was there when I was having a bad day
I'm so sorry for your loss, Judy.
thanks for the knd words. i guess as both of us have Parkinsons its a thought that it is environment that could be the cause of this disease
Kat, are you ok, what are you thinking or feeling?