#66: Reel and Real: Exploring Carbidopa/Levodopa and Parkinson's in Cinema

In this podcast, we delve into the intersection of cinema portrayls of Parkinson's and how we feel about carbadopa/levedopa.

[@nancythompson6436]

Thanks for the clear and concise explanation of how Levadopa/carba dopa work. Also, I love your show because you guys are always smiling and laughing. I always feel uplifted after watching you.

[@topper6738]

I signed up for Apple TV so I could watch Still. I thought MJ Fox was great. He was an encouragement to me. I'm still working and close to retirement age and these last few years have been tough. But as Jessica mentioned, Mr. Fox has had PD for 30 years... I've only had PD for 6 years. To New World: I take 8 Rytary (controlled release levodopa) a day for the last 2 years and it seems to work OK. I wouldn't be able to work without it I hope to work 2 more years. Thanks Brian and Jessica for these programs.

[@barbarabreen4780]

My husband is on this drug for a year now.He is eighty years old and doing very well…..I think peopleshould educate themselves about the disease……that’s what helps ….So thankful for sharing….I listen to those pod casts….I find these very helpful….in educating myself

[@thesecretlifeofparkinsons]

That's great to hear and exactly what we were hoping for - educating those in the community. Good luck to you and your husband!

[@gjvarnado]

Another informative episode. Thanks for sharing your experiences; very relatable!

[@johnknox1490]

I really enjoy your podcast. As a 38 YO PWP diagnosed 8 months ago this podcast has really helped me better understand PD. I feel like I'm finally at grips with the whole thing and ready for the next challenge as I know they'll be many to come. Thank you for everything you are doing and keep it up! I like you guys joke around and it makes the show fun. Brian, you need to jab back at Jessica getting onto you about your speech volume assuming it is a complication of PD. Do you feel like DBS has helped your speech? Curious, as I struggle with speech volume as well. Cheers!

[@0xedderkop]

I am from Portugal and discovered your channel this week. I have a YOPD having installed a DBS in June 2021. 46 yo diagnosed in 2005. Your channel has very good content. Love it❤❤

[@thesecretlifeofparkinsons]

Thanks for watching!

[@ricardotorres1130]

Your videos have been VERY helpful. Keep up the good work😁😁

[@johndonaldson5126]

This all makes sense and should help most understand the long term effects of C/L.

[@maneeshajoshi1502]

I faintly remember there is a film by Alfred Hitchcock I don't remember the title. In it the villain when he sees someone who might expose him starts raising brow involuntarily. Anybody knows?

[@Anthony99355]

42, just diagnosed this July. Starting levodopa next week. I’m worried about getting dyskinesia. Have you had any problems with that?

[@thesecretlifeofparkinsons]

Don’t worry about that yet. For whatever reason, that’s the first thing we read or doctors tell us. But it usually takes a lot of c/l for dyskinesia - at least from my experience and conversations. I take 6 c/l a day and don’t have dyskinesia yet…I’m 41

[@Anthony99355]

That’s good to know. I enjoy the channel very much.

[@newworld6474]

So what options are there after 5ish years over levodopa?

[@gjvarnado]

I’m 7 years into my diagnosis and carbidopa/levodopa is still working great in combination with pramipexole, exercise, and stress management. My dosage has been adjusted each year.

[@kitkat20221]

​@@gjvarnado How long after taking the medication are you symptom free? I feel as though I still shake when reaching out for things even an hour after medication. Does that mean I'm underdosed?

[@bradkeough8073]

One thing with young onset I've been told is the progression is a lot slower and I would agree. I find it interesting everyone gets wrapped around death from Parkinson's. MSA Parkinson does kill you, regular Parkinson kills you in my books too, because it causes the problem that does you in more than likely Aspiration, fall, etc. Your death certificate won't say it but it does...it is just like when something like stroke or asbestosis odds are you will die from a cardiac arrest but we all know what killed you. I've had PD for around 20 yrs now and to look at it at first glance you wouldn't know. I'm on 9 25/100 and 2 50/200. I have very little tremors mine is severe stiffness along with others. my takeaway is it is very frightening at first but as time passes you learn to live with it and adjust. I love The Secret Life of Parkinson's because it is very informative about new things happening to you unlike when I got diagnosed ie people with PD talking about their PD. Hollywood is make believe world/movies, they show rapid onset of PD because they only have 2 hrs to make a point. I agree Michael J Fox does display more first he's had it for 30+ yrs. and when you take the meds he does a lot of it is side effect of the meds, then he's under a microscope when cameras run...just think about how bad your PD shows up when a dr. examines you than when you're at home. I had a DAT Scan done a couple years ago and they came out and said your brain is perfect...Prior to the scan I had to go off my C/L and Memory meds for 72 hrs. the first day I missed my morning does and I was stiff, come my third dose that evening I was shuffling and almost falling fast forward to the day of the exam I couldn't dress myself it took my wife everything she had to get me in and out of my car, I couldn't think or answer any questions for myself then they come out and say your brains perfect. I took my meds and within 50 min I was able to walk, talk, think... My Neurologist looked at me and said you definitely have PD because you basically self tested myself. So long story short start taking your meds and don't hold back C/L is just medicine that is proven straight up that works for PD not the boogie man. Watch out for the antagonist meds they have large side effects. They have found a lot of things that help slow the progression but you have to get past the monsters the media has made them out to be. Sorry for the long writing.

[@thesecretlifeofparkinsons]

Thanks for the response

[@luanndavis-jindela3223]

2:39

[@luanndavis-jindela3223]

❤❤😊

[@luanndavis-jindela3223]

😊

[@luanndavis-jindela3223]

8😊😊

[@gjvarnado]

People often say to me “you don’t look like you have Parkinson’s “ until they see me in an “off” moment.

[@Zerobar78.]

I’ll be honest, your symptoms aren’t very noticeable on the show. Sinemet works quite well, especially for those of us early in the disease, but I do see some things that tell me you do have it. Then there are those like me that the medication does help but even when it’s not working or I’m not on it you wouldn’t know. I have it anyway. I have virtually no tremor, my version of this disease presents with rigidity and Brady kinesia

[@deborahmueller591]

Shrinking -x it was that bad. I agree! Made me so angry. What were they thinking?

[@jeancattoi2796]

No Apple TV. So I can not watch.