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.
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!
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
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.
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..❤
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!
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.
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.
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
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.
Enjoyed your Podcast. I have uploaded a bunch of videos on TH-cam over the years on how I have used sports to deal with PD. Sports help majorly. Pramesh Ratnakar
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. 😂
We did an episode with a spouse of one of our gym friends. Episode #23. Here you can check it out: th-cam.com/video/WGHiZS9h0fw/w-d-xo.htmlsi=RgFmftgl6lzO52Y8
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
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.
I does happen overnight if you are one of the lucky ones (yeah me) that has vascular Parkinson’s.😐🫤😒👀. Literally in one day I could no longer just walk. Like the day before.😐. I am now walking like The Tin Man in the Wizard of Oz. 👀. Only with small steps thrown in for fun.🧐. But thankfully I have zero tremors. I was diagnosed in March 2024, and already in the ‘middle stages’. Thanks to this program I now go to Planet Fitness every other day. And I am trying Hyperbaric oxygen treatments to see if it can help. 🙌🙌🙌. Thanks for your show. I love the way you two bicker like best friends.😁🙌👍🏼😂
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.
What an excellent idea! I was diagnosed on my 48th birthday a little over 4 years ago and I'm still learning every day.
I love you guys. I was diagnosed one year ago yesterday. I am learning as I go. I wish I could find a support group like yours. 🌼
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!
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.
Thanks!
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
Kiziks are awesome, and the selections are great. You’ll love them!
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.
Soo glad I found you. Had surgeries on spine because of pain in spine and falling. 5 yrs later I’m back to pain … too many problems now to exercise.
When were you diagnosed? I've learned that a lot of people had pain and shoulder issues because of PD but didn't realize it was related.
So true, listening to ur podcast is one of the best to socialise....keep up the great work!..
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..❤
❤️
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!
y’all crack me up😂
love your show!!
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.
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.
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
Awesome idea!!
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.
Great idea and possibly a state by state registry of support groups by city
Both are great ideas! Thank you!
The Davis Phinney website has ambassadors that are available to support you!!😊
Enjoyed your Podcast. I have uploaded a bunch of videos on TH-cam over the years on how I have used sports to deal with PD. Sports help majorly.
Pramesh Ratnakar
I so appretiate you both! 💕
Thanks for going these. Please post information on your foundation
The non-profit we started is called the 5KforJK. You can find out more on www.5KforJK.org. Thanks for asking!
closest community is a couple hours away, any suggestions on how to start a more local community to bring others with PD together for support?
What is the Shaky Hands book? Can it be ordered through a site like Amazon?
Yes! It's called Shaky Hands, a Kids Guide. It's a great book! www.amazon.com/Shaky-Hands-Guide-Parkinsons-Disease/dp/1508510881
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. 😂
I am a spouse of someone with Parkinson’s. Could you include suggestions for family to help person with Parkinson’s diagnosis?
We did an episode with a spouse of one of our gym friends. Episode #23. Here you can check it out: th-cam.com/video/WGHiZS9h0fw/w-d-xo.htmlsi=RgFmftgl6lzO52Y8
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
Thanks, Robert! Here's the link to my non-profit. You can click "Donate Today". 5kforjk.org/
Are you all from Columbus, Ohio? I am about 27 miles East of Cincinnati.
Yes, we are in Columbus! If you ever drive here, come check out the gym, PDNextSteps!
nail and hair issues...it's scary when your finger nails start breakiing in odd ways
Are hair and nail issues a symptom of Parkinson's or a side effect of medications? I haven't heard that yet.
Many people with PD develop oily or flaky skin, especially on the face and scalp.
What’s the best site for getting immediate answers ?
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.
You guys are funny! You should take this show on the road. No, really...get outa here!! (just kidding...thank you ;-)
Thanks :)
Do you have a list of communities across the US/Canada? Or does a site exist for that?
How about PD Starter Kit? PD Newbie Kit?
I like PD Starter kit
I am now searching for that coffee mug.....
Let me know if you didn't find it. I can ask Brian
I see Skechers have new line of sneakers called Slip Ins that look like what Kizics do.
"Live your life" kit.
Encourage people to find a movement disorder specialist
I does happen overnight if you are one of the lucky ones (yeah me) that has vascular Parkinson’s.😐🫤😒👀. Literally in one day I could no longer just walk. Like the day before.😐. I am now walking like The Tin Man in the Wizard of Oz. 👀. Only with small steps thrown in for fun.🧐. But thankfully I have zero tremors. I was diagnosed in March 2024, and already in the ‘middle stages’. Thanks to this program I now go to Planet Fitness every other day. And I am trying Hyperbaric oxygen treatments to see if it can help. 🙌🙌🙌. Thanks for your show. I love the way you two bicker like best friends.😁🙌👍🏼😂