#70: Tips and Tricks to Living with Parkinson's
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- čas přidán 1. 07. 2024
- In this episode, Jessica and Brian share a few tips and tricks that they use in their everyday life to make things a little easier. Everything from driving to clasping your necklace. Share your everyday tips with us in the comment section!
Thank you both for sharing your experiences with Parkinson’s.
You are appreciated for taking the time and energy to do this.
Good show you guys. Thanks for the tips!
Really like your show I was diagnosed about a year ago.
I also use the alarm on my phone to remind me when I need to take medicine
I would be absolutely lost without the timer function on my I phone.
I don’t have PD but I do have cervical dystonia. I will be undergoing DBS in September. I enjoy the show as it gives me real world insight as to what’s coming. Thanks for the uploads.
Thanks for the helpful hints. Great video.
I am still trying to walk for my main form of exercise. I have found that over exaggerating my arm swings helps me, especially on inclines.
I also found a Nordic walking group in the UK, on CZcams, that specifically recommended it for PD. They even made a couple videos with warm-up exercises. I had already been investigating it because a friend recommended I use walking poles, because canes increase your chance of falling when you have a stooped posture. Apparently, Nordic walking is more ergonomic, meaning it requires less energy. You have to buy a pair of special boot-shaped feet that fit over the ends of your trekking poles.
Thanks for your ongoing insights - maybe an idea for a podcast? Do you use and particular or modified productivity systems to leverage your time? I'm trying to repurpose GTD around my new normal as focus and efficiency are becoming really important for me. Any thoughts there?
do you ever take levodopa to lesson the tremor to go to sleep ... and sleep time bathroom break to go back to sleep like in the middle of the night
Do you ever add a pill to your line up?
I have an event coming up which will be a long day. I now take 3 LD a day. I want to take 4 that day. ? Would you
Hello Jessica and Brian ❤
I was wondering which meds do you take for your PD Jessica?
If it’s ok for you to share.
Your information and dynamic chemistry is inspiring. Episode after episode. Thank you so very much from UK
Ttt
😢 16:15
4 cats
How about a dating site for people with PD??
How can I get link to view your show and passs I on to my friends
Here's the link to share: www.youtube.com/@thesecretlifeofparkinsons
Hi Jessica, how do you drink your medicine is it at the same time every day? Also, do you drink it with food or without. Thank you so much
I take my medication at the same exact time every day: 7am, 11am, 3pm, 7pm, 10pm. I take it with a glass of water. Sometimes food sometimes not. But always water
Was I wrong to think that only protien should be avoided is other types of food ok? If not for how long ? I was unaware . My med bottle says " with or without food".
Also great tip about the magnets. Does it have strong hold?
Do you happen to have tips for earrings backing with the posts? I have trouble with that as well.
I found high sugar foods, caffeine a no go. You should look up the mind diet.
I found this helpful for me. A dietitian nutritionist would be worth talking with.
@@JessieTheBeagle oh wow had no knowledge of caffeine. And how long apart before and after the medication ?
Levadopa is absorbed in the upper intestine. Not the stomach.
So you want to take your sinemet on an empty stomach and wash it down with a full glass of water. Then give it an hour.
That maximizes levadopa that makes it to the brain. It also eases nausea from the med as it isn’t in the stomach long.
@@vincewatkins8439 Empty stomach, one hour or 2 after food? Since my Rytary and Levedopa wear off within 2.5-3 hours, I will have to increase my dosage from every 4hrs to every 3hrs, which would make it tougher to manuever. Interesitngly, I told my pharmacy that I have heard in many places to eat on empty stomach. Her response was food or no food OK. :0
I was just recently diagnosed 3 weeks ago. Is it better to start meds asap or wait until more symptoms develop?
I know you didn't ask to be part of this group, but if you find the right support, the PD community is an amazing group of individuals! There's no harm in starting meds now. You want to live the best you can right now. So if that means taking a low dose of meds to reduce the PD symptoms, do it. Your body doesn't build immunity to these drugs, which some people believe, and then they think they "won't work" later. What happens is, because it's a degenerative disease, we are getting worse over time. So then we need more medication. But there comes a point where the medication can only do so much. I compare it to my friend that gets severe, chronic migraines. If she took advil NOTHING, and I mean NOTHING would change. She would still be in pain. Same with us. When our disease gets worse, the carbadopa/levadopa can only do so much. I hope that helps!
@@thesecretlifeofparkinsons thank you very much
Another question for you guys. Since I've been diagnosed with Parkinson's, that's all. I think about. Day after day it just does not leave my mind. I'm think I'm going crazy. Is there ever a day that you don't think about Parkinson's? I sure would love to have at least one day without that. Thought in my mind. Any suggestions? Thank you
I still think about it everyday. Takin meds ever few hours makes you think about it. But since the meds work for a good amount of time, it doesn’t consume my everyday. Are you newly diagnosed? I feel the same way you did for the first year or two.
I was the same way for the first year, PD consumed my every thought. Then one day I realized I wasn't living in the moment and appreciating the time with family and friends. I have really put it behind me as much as possible.
@@brianbaker4648 You did have stiffness as well if I'm not wrong. is that right? The stiffness is killing me. And I have more off days than on days. They still have not been able to adjust my medication. Going too high up gives me similar symptoms but much exaggerated. I was on way too high medication. Lowered it and started feeling better but it only lasts for a short period. Doctors are not responding and I have to suffer for 10 to 20 days at a time before someone responds to me. I'm so lost. How did you handle yours and did you have issues with adjustment?
Hello Brian, how do you feel now with DBS? Do you have to take any meds?
You are doing great with this podcast. ❤
Thanks for checking in. I am doing well. I am not currently on any PD meds. Biggest thing is I don't have any off periods.
You should
I chase mine with Bear paw cookies
Excuse me you keep it in
do you find coffee/dark chocolate dramatically increases tremor
I haven't noticed either of these having an impact, but of course everyone reactions are different with PD.
Hi. I love photography. But my Pd means I'm unsteady on my feet. I miss going out walking and shooting photos. Do you have any silver bullet tips for me. The only real hobby that I love. (By the way I live in New Zealand)
If you would like to email me at jessica@thesecretlifeofpd.org and I can put you in touch with a friend of mine who has Parkinson's and is also a photographer.
I recommend using a tripod and shooting short videos or “burst mode” where the camera captures a series of pictures. Configure your camera for maximum video image stabilization.
A single pole ‘tripod’ (long selfie stick with base on the ground) can steady your shot and also help provide stability as you are walking. Alternative would be an off-road wheel chair with a camera mounted to it.
You can then edit the video or burst mode shots for the screenshot that provides the best still photo view.
How do I deal with my speech. I have very serious speech issues
Here is a podcast we did with an ENT: czcams.com/video/2F-mIjIttzA/video.htmlsi=9sET-43BHphsTrVp
And another podcast with a nurse/therapist who works at that ENT: czcams.com/video/r7oauUgSbjM/video.html
Hey guys, how do you deal with the depression? The anxiety the sadness? Or is it just me? I've tried eight types of medication and nothing's helped. Please let me know what you think.
I have it as well and I still have a very tough time dealing with the diagnosis and the quick progression. And having to search on my own to find helpful information. My understanding is PD also causes depression on its own. So it would be helpful to get assistance from your doctor with medication if he feels accordingly. My doctor was going to give me Ativan for the sudden anxieties that I get when I have the symptoms. But after doing some research I have requested propanolol which has helped me some as I think Ativan and is more addictive.
I recently started on Lexapro and have found it helpful.
Try not to sink in your own misery. I know is difficult and we like to isolate but socializing and getting out help a lot
Definitely getting out will help. But some medications help the anxiety more than the others. Have you ever tried Effexor? If I'm not wrong Lexapro is from the same family as well that addresses anxiety as well.
Essayer d améliorer le microbiote : probiotiques ,spiruline, phycocyanine, curcuma, enzymes digestives,
Can you please put the eyeliner product’s name in the comments? Thank you!
It’s called Guide Beauty: www.guidebeauty.com
I am 3 hours meds ware off
Interesting! Indeed! As Spock would have said.
Sex?
I wanna like and support you guys, but cmon seriously? First tip is I can have a cookie with my meds? Second tip is an eye liner hack? Not the first time you haven’t delivered good info
Thank for the feedback. Do you have any tips or ideas for future podcasts? Did you check our our first tips and tricks (episode 8)? What would you like to learn? If it’s not something we produce, I can probably point you in the right direction to another podcast or resource. Happy to help