The Secret Life of Parkinson's: What do you wish you knew when you were diagnosed with Parkinson's? Listen to what some people with Parkinson's wish they knew when they were diagnosed.
this is my first time on your site. Things that I wish I knew when I was officially diagnosed about 5 years ago, I would have to say everything. The more I find out the farther back in my life I go. I tried to tell my neurologist/ movement specialist about a list I found on the internet, from a researcher in the northwest whose name I cannot remember, with a chart I filled out to get a picture my life with PD. To say he was less than impressed puts it mildly. I did the questionaire because of the time she had put into developing her system for diagnosing life witH PD. She is an ND, PHD and another that I can't remember. The diagram chart came up was somwhat disturbing at first. Sorry for this too long story. I am a male who just turned 84 years old. I can reasonably find symptoms of PD in my life back to the late eighties/early nineties. I could go on for much longer but I think this is long enough. Thank you for your website. I will continue reading here.
Great idea. I would leave the age range out completely. I'm 33 and have had symptoms for many many years before my diagnosis. Dating back as far as teen years.
I wish I knew ahead of time that when I got hit with chronic constipation that it was going to lead to apathy and the ups and downs of anxiety and other symptoms of Parkinson's that it would take time to be diagnosed. I did find the keys to manage the symptoms better through medications and self care 👍 Be patient and kind to yourself
The main thing I wish I knew when I was first diagnosed was the how bad and long “off times “ can be..at times it is so tough! Almost to a breaking point. But thank God..❤
Just found you, awesome. Diagnosed 2021 at 65, I wish I had the iceberg diagram and more info about non-motor effects: from anxiety to memory. Also, you mention the frequency of changing meds - I'm still trying to figure out how that impacts health insurance for travel when " need to be stable" to be covered.
This is the best I wish I knew I’ve seen. It’s great hearing from younger people. I was diagnosed last year at 55. Fit, healthy and 2 months before getting married for the first time. Our biggest challenge is working out how we live with the condition and work. What I’ve learned is it’s ok to feel rubbish and not do anything. But not for too long.If I’ve felt rubbish for a day I make myself go for a walk in the fields or paint and I usually feel much better. I love your cards and could do with a set. Any chance you could add a pdf file then I could print out.
Your podcasts have been so helpful ! Thank you so much ! I wish I had known about the exercise that I would need to do. The Drs just say exercise but they don’t explain the type needed to help keep the progression away. Rock Steady Boxing I found 3 years ago , but really wish I had known about it at the time of my diagnosis back in 2018. 😊
Glad you found it when you did! Starting exercise at anytime in your PD journey will help slow the progression and in some cases I've seen some people improve (example: I know someone who had trouble raising both their arms and then being able to fully extend them). Good luck to you!
Enjoyed your Podcast. I have uploaded a bunch of videos on RU-vid over the years on how I have used sports to deal with PD. Sports help majorly. Pramesh Ratnakar
Thank you! PD diagnosed 6-weeks ago. Brought symptomatic events from the past 4 years into focus. It’s been around a while. Really nice to know you are CMH-based. I’m TBDBITL-alumni (67 yrs old), living in the Sacramento, CA region. Keep going!
PD essentials hello my name is Dennis and I have been going through a battery of test an due to get my results soon and hopefully get started on some medications.I have the symptoms and the not knowing is beginning to affect my attitude and mindset, kind of want to be disconnected, but we will overcome. I enjoy your podcast.I live in Texas an looking for a connection down here thank again take care. #informationisthekey
I wish I had known about anesthesia, and what it can do for someone with PD. I was not aware of what was going on after anesthesia for about a year. Also PD is more than tremors.
What a great idea! Thank you for sharing and for all the effort you put into your podcast. I have a preliminary diagnosis of Lewy Body Dementia and am beginning to experience tremors and rigidity. Your information is really helpful. Have either of you experienced visual problems/
No, we have not. I just went to the eye doctor a few months ago and my vision is still 20/20, which I'm surprised because I had Lasik surgery 10 years ago.
How about a “mentor” list. Individuals with Parkinson’s could volunteer their contact information in a way that is still private but would offer insights and what to expect next to a new Parkinson’s diagnosed individual. When I was first diagnosed, I called someone that had had Parkinson’s for a while and just asked questions about what to expect next. That was very helpful for me.
Jessica and Brian, your podcast is important. It’s window into how to LIVE with PD. Please keep it up. The kit is a great idea! How do you make a donation to your 503c nonprofit? - Robert
Thank you very much, and thank you for your podcasts. I always look forward to another episode of The Secret Life of Parkinson’s, and I always learn so much from them. Plus, I love your give and take! It cracks me up. 😂
There's a new partnership with Michael J Fox Foundation and a company called Synapticure that might be able to help you: www.synapticure.com/m/mjff-launch#:~:text=Synapticure%20empowers%20patients%20living%20with,to%20people%20living%20with%20Parkinson's.
