One person’s 10 year journey of taking Le... - Cure Parkinson's

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One person’s 10 year journey of taking Levodopa. How the amount has increased, the change in dosing intervals and how they manage it.

Buckholt profile image
20 Replies

This video is a really great honest and open account of someone’s experience in taking Levodopa. Well worth viewing for anyone taking the drug or thinking of taking it.

youtube.com/watch?v=AL-86-d...

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Buckholt profile image
Buckholt
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20 Replies
jimcaster profile image
jimcaster

Great find! Thanks for sharing. I love her approach and her attitude. I'm going to subscribe to her YouTube channel.

Binday profile image
Binday in reply tojimcaster

How do you subscribe?

Thanks

Bennorca profile image
Bennorca in reply toBinday

On YouTube search for: My Carbidopa/Levodopa Evolution...10 Years w/Parkinson's!

Binday profile image
Binday in reply toBennorca

Thank you

Eryl profile image
Eryl in reply toBinday

Click on 'subscribe beneath the video. Also select the black bell icon in the drop down menu for all notifications so that you'll know when anew video is posted.

jeanette2372 profile image
jeanette2372

Thank you for sharing this. So interesting and I really think she's got a great attitude. I have subscribed to her YouTube channel. 🙂

johntPM profile image
johntPM

Excellent video.

Deals with the need to have:

- a dose that is higher enough for your needs, even if this is above 1000 mg C/L equivalent per day;

- dynamic dosing, taking pills as and when you need them, rather than at fixed times each day;

- for some, dyskinesia may be better than stiffness/slowness.

CuriousMe12 profile image
CuriousMe12

That's 20 minutes of my life lost watching a wannabe youtuber explaining her drug addiction.Does she work for big pharma?

HugoRipanykhazov profile image
HugoRipanykhazov in reply toCuriousMe12

WOW! I cant help but think that that comment was a bit unfair?

She is a bit light on scientific facts but I kinda appreciate that! Much of the science is hedged about with all sorts of disclaimers about

not everyone.....

you may have the opposite experience..........

there are no standard progressions.............

But I like her style.

The suggestion that she works for big pharma sounds pure tinfoil-helmet conspiracy theory!!

CuriousMe12 profile image
CuriousMe12 in reply toHugoRipanykhazov

Big pharma comment was tongue in cheek.

She did another YouTube vid gaslighting people who decide to delay taking levodopa. Labelling them all as being levodopa phobes. So, yeah shes very balanced opinions on levodopa ...or maybe not🙄

Juliegrace profile image
Juliegrace in reply toCuriousMe12

Gaslighting? Really? Because she’s enthusiastic about a medication that helps her? And referring to the need for levodopa as an addiction is trying to shame people who benefit from it. I sincerely hope you are always able to stay on your high horse and avoid the need for it.

CuriousMe12 profile image
CuriousMe12 in reply toJuliegrace

Quite the opposite. I'm happy for people to take levodopa. I use it in small doses myself and will no doubt take more as time goes on. But she referred to people in a previous video as levodopa phobes, which is insulting . And now she seems to be proposing maxing out on it.Perhaps referring to it as an addiction is wrong of me (but possibly not as I'm guessing we'll mostly all end up hooked eventually).

But to those who avoid it and get by through alternative methods, she should leave alone.

kevowpd profile image
kevowpd in reply toCuriousMe12

It's a documented phenomenon.

nature.com/articles/s41531-....

HugoRipanykhazov profile image
HugoRipanykhazov in reply tokevowpd

That isnt it at all. Sinemet is the first drug prescribed for PD. I have often noticed people with kinda obvious signs of PD who say they arent on any medication.

The reason is something to do with an irrational belief that if you can continue to be in denial about having PD, you won't have it.

It is nothing to do with having a phobia about a drug which most of them would never have heard of.

Binday profile image
Binday

Hi

Thank for your video! How do i subscribe?

bradykin profile image
bradykin

I find this kind of detailed "testimony" very useful, Thanks for sharing!

Eryl profile image
Eryl

Rather than just trying to manage the symptoms isn't it better to get to the root causes of why dopamine isn't being generated naturally of what is destroying dopamine? This video doesn't even address the toxic effects of sugar on the body, esp the nerves ( just search for 'sugar toxic' to get a load of results confirming this. youtu.be/OKVi7aClKrA?si=eBE...

park_bear profile image
park_bear in reply toEryl

Ray Dorsey does good work about avoiding the environmental causes of Parkinson's. Here is another one: healthunlocked.com/cure-par...

However, once Parkinson's developed years later, it is rather late to avoid those causes.

Alphasyn profile image
Alphasyn

What a perfect 20 minutes to convince any Parkinsonian NOT to start with levodopa! You can see where this is going, as probably within a year she will have had a DBS... 'the next heaven' or whatever.

munnings profile image
munnings

It was so interesting to listen to your views. I was diagnosed with Parkinson’s 12 years ago and I am on 8x Madopar 25/100 a day. If I take less I become so rigid that I can’t move but I’m now starting to suffer with Bradykinesia on a more uncomfortable level. It can come down to a choice between the two and at least if you’re mobile you can get things done. For my own benefit I have to tweak my medication on a daily basis, it depends on what I am doing and how I’m feeling.

Thank you for sharing, it can’t be easy but you seem to be doing a decent job in managing your symptoms. Good luck in all you do.

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