Episode #39: Things we wish we knew when we were diagnosed with Parkinson's
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- เผยแพร่เมื่อ 26 มิ.ย. 2024
- 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.
So true, listening to ur podcast is one of the best to socialise....keep up the great work!..
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. 🌼
I so appretiate you both! 💕
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.
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!
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.
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.
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!
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.
Awesome idea!!
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
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 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.
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.
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!!😊
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!
You guys are funny! You should take this show on the road. No, really...get outa here!! (just kidding...thank you ;-)
Thanks :)
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/
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. 😂
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.
Do you have a list of communities across the US/Canada? Or does a site exist for that?
I see Skechers have new line of sneakers called Slip Ins that look like what Kizics do.
Encourage people to find a movement disorder specialist
"Live your life" kit.
How about PD Starter Kit? PD Newbie Kit?
I like PD Starter kit