Living With Parkinson's Meetup: What I Wish I knew Then - March 2023

[@DebbieNowicki-h4o]

Thank you for your informative information. I was newly diagnosed February 2024

[@davisphinneyfdn]

You're very welcome. That's a very recent diagnosis! Please feel free to reach us at [e-mail] if we can help in any way.

[@kitkat20221]

I'm sorry to hear that. It is a very hard diagnosis to deal with that first.

[@jeremykitchin3527]

I’m in England (UK) and was diagnosed about 9 months ago; everything I know has been via the the Davis Phinney webinars and a series of Parkinson’s booklets, FOC and written in plain English, both sources are very helpful indeed. My particular concern is not knowing what the prognosis is for me and my PD. The unknown can be very scarey! Jeremy Kitchin, Nottingham.

[@davisphinneyfdn]

Hi Jeremy - Yes! The unknown is tough. I've had really great conversations about this with many people living with Parkinson's as part of our living well livestream series here: www.youtube.com/@davisphinneyfdn/streams

[@TheLittleEconomist]

Great video again. I was really interested to learn that others had lost their ability to skip. I discovered that 2 weeks ago and have now retaught myself how to do it - am doing a lot of that lately. Although exercise maybe prescribed in Europe it might not be the right type of thing for you or your age. The suggestion made to me was gardening and walking. Your video’s on exercise have helped me greatly. Thank you. I’d like to hear about others working with Parkinson’s. I work in IT and don’t see why I can’t continue working with the disability. Wondering what devices could help us. Have just stepped back from a demanding team lead role back to doing though.

[@davisphinneyfdn]

Many people continue to work for decades with Parkinson's. There are so many factors that influence the ability or decisions to work. Here's a great interview we did with Jim Allen the other day on the topic of work, accommodations, and Parkinson's: kzbin.infojjTJEoBw8c8

[@bethwatts6389]

​@@davisphinneyfdn😅

[@DennyKahle]

noticed symptoms 4 years ish-diagnosed 2 years ish-- had dbs at Cleveland Clinic-just now going through adjustments- would do it again-know that you always have something to give if only a hug, a kind word , or a smile

[@DennyKahle]

ps I had been looking for work shaking paint, churning butter etc. but the doctor took my shaking away

[@jackienolan9859]

Love this talk but why hasn't anyone even MENTIONED xigong 35 minutes into this conversation?? I'm 14 months into my diagnosis and thank my lucky stars for what xigong has done for me. I have even reduced my carda/dopa. . .Xigong is so incredible for parkinsons. . .

[@bethwatts6389]

Ko😂😅mmn 🎉a .😮

[@bethwatts6389]

54:21

[@parkinsonsmysecondshadow]

Be strict in your med timings. Stick with your timings. Food issues protein, I make sure to eat 1 hour after my meds, light controlled meals during the day. Heavy meal later in evening when I am done for the day. So protein will not be too much of an impact.

[@elainefleureton5536]

Hi. I am trying to decide if I want to go through with finding out the final diagnosis. I have self diagnosed my condition and had my first visit with neurology. That doctor spent a few minutes of testing and said I probably ha Parkinson’s. He said 90% sure but wanted the big test and I’m not sure I want to put my husband and I through all that. Guess what! I’m 82 years old and am very sensitive to medicines. I had neck and back surgery this last Jan have spent a lot of time in and out of rehab. I cannot walk without walker and use a wheelchair when needed. My husband will be 83 and we live in an RV in Arizona. Our 4 children r in Maryland and visit when can. Is there someone out there that can help me with my decision?

[@splashesin8]

Wonderful session❣️ Thanks y'all! ❤

[@deborahrose9568]

I love this group of inspiring people! I was wondering if anyone had information on the usefulness of the Symbyx Biome machine.

[@davisphinneyfdn]

Thanks for your comment. The short answer re: red light therapy is that we haven't seen conclusive enough data about the benefits of light therapy to suggest it as a viable treatment. That said, there is certainly some evidence suggesting further research is warranted and we'll be excited to see further studies on the subject.

[@debbiegardiner7819]

I would love to get in touch with Doug Reid of Lafayette. I live in Heritage Todd Creek in Thornton, CO and am just starting a Support Group at the Clubhouse in the Community. I was recently diagnosed with Parkinsons and MS. Thank yo u! Debbie Gardiner

[@davisphinneyfdn]

You can reach Doug through his ambassador page: davisphinneyfoundation.org/ambassador/doug-reid/

[@kitkat20221]

RYTARY although not agonist caused me compulsive behavior of over cleaning and scrubbing. And giving myself a beautiful haircut over and over until I had my hair super short. Notice it within a few days and stopped it . I came back to normal except as a boy (super short cut) and a cleaner closet and house . 😢 I am looking for a new MDS, who is more involved to try to help me balance my meds. 😢

[@kitkat20221]

Oh forgot to say but taking 2 Ratary before going to bed . I now get a full night sleep, Instead of 2 hrs . And sleep talking from 5-8 times per night., To now 1-3 very short episodes .

[@reginahonore9717]

What is Ratary? Thanks

[@kitkat20221]

@@reginahonore9717 @reginahonore9717 rytary is a non-generic time release that is made levodopa carbidopa But the doctors believe that because it is a capsule it's better than the old time release sinemet. Some people love it and some hate it As an all-day medication. Wish I'm one of those people. But I like taking it at bedtime. Because the old gereic sinemet time release did not work for me. But usually any time release at bedtime helps with sleep and some restless legs and night dream and sleep talking . I would suggest with your insurance to see if they cover it and if they don't if they would considerate with pre-authorization from the doctor. If they cover you and look like online for copay coupon so you don't pay as much copay on it as you would normally. The co-pay coupons usually work with commercialb/ provate insurances not the Medi-Cal and such government programs

[@mayannjudithmaske6456]

i work like theres no tomorrow, now i learn to sit, i learn to walk instead of always running

[@davisphinneyfdn]

The panelists on the meetup often talk about the way living with Parkinson's makes one a "master of the pivot" because how frequently they find themselves making adjustments to new circumstances. Of course, this is sometimes easier said than done.

[@vanessayim4929]

It is true i'm still hunting for a right support group to help me fight for my downfall & unwelcome & unpleasant situation. Please help?

[@harryselby7290]

I was diagno😢sed in 2013😅 9 years later I had to have it removed because of the infection was allergic to the internal I'm living with tremors in mp right and hand. I wish that I wish that I knew about being allergic to the😊 internal when I had my DBS.

[@davisphinneyfdn]

Thank you. What you shared is important. Some people can have difficult reactions to the DBS devices, and this risk is not always mentioned in consultations about DBS. We're sorry your experience was not positive.

[@marktaylor3047]

I'd like to hear how you all have dealt with anxiety and nausea please. I have relentless nausea

[@davisphinneyfdn]

HI Mark - Dr. K talks about nausea a bit in this video - kzbin.info/www/bejne/hniZgZSonbx3aLc. We also talk about it in this post and some formulations that potentially limit nausea: davisphinneyfoundation.org/levodopa-formulations/ Regarding anxiety, we have quite a few webinars and posts on this topic that you can find at the following links: kzbin.info/www/bejne/n4OcfWmmm7uJhpY kzbin.info/www/bejne/jYSQo3R5i7merJY kzbin.info/www/bejne/e5jXnquIfNyGbck kzbin.info/www/bejne/iaaVgXqZgd2tnas davisphinneyfoundation.org/vanquishing-depression-and-anxiety/ davisphinneyfoundation.org/how-exercise-can-ease-anxiety/ davisphinneyfoundation.org/webinar-recording-depression-anxiety-apathy-and-how-to-manage-them/

[@yvonnejones8286]

What is DBS?

[@davisphinneyfdn]

DBS stands for Deep Brain Stimulation, a surgical procedure used to alleviate symptoms of Parkinson's disease.

[@sfhamilton1]

What is DBS?

[@davisphinneyfdn]

Deep Brain Stimulation. You can read more about it here: davisphinneyfoundation.org/the-what-why-how-more-of-dbs-for-the-newly-diagnosed/

[@tammydawnhardin641]

What is DVS? Sorry I’m new

[@davisphinneyfdn]

Hi Tammy - It's DBS - Deep Brain Stimulation: You can learn more about it here: davisphinneyfoundation.org/deep-brain-stimulation-dbs-resources/

[@danpalmer7676]

@@davisphinneyfdn Don't know if Tammy is from the U.K,but we don't talk about D.B.S over here.

[@trents5864]

The meds are terrible with side effects im staying off of them

[@davisphinneyfdn]

Hi Trent - I'm sorry you haven't found medications that work for you. I hope some of the new options coming out will be a better fit.

[@hettymores6754]

Ii

[@danpalmer7676]

Different perspective depending on your location it seems(I live in U.K).First thing i remember being told was to avoid U.S.A on the internet and only watch U.K.Maybe i should look into that further.

[@davisphinneyfdn]

Interesting. We are here for you. Let us know at [e-mail] if we can help in any way.