What I learned only now after ten years. - Cure Parkinson's

Cure Parkinson's

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What I learned only now after ten years.

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What I learned today that in the ten years past no doctor has taught.

Ref: Levodopa, the “bible”.

“The New Parkinson’s Disease Treatment Book”

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic.

I learned I must determine the optimum dose. What helps reduce symptoms. Thereafter I determine how far apart to space each dose without overlapping.

Emphasis on I.

Further more, dyskinesia is a result of the last single dose and not the total daily count of mg.

12 Replies
johntPM profile image
johntPM

1. Yes, Ahlskog is a must read.

2. "Emphasis on I". In the doctors' ideal world PwP would have access to expert doctors at all times, and we could leave everything to them. But the reality of the situation for many of us is that appointments are infrequent and not long enough to go into depth (30 minutes, twice per year is typical). This can never be enough to optimize our care regimen, especially one like PD where the goal posts are moving. What's more, only we have 24/7 access to our symptoms. So, we should work together with our doctors to optimize the regimen.

Let's have an example of how the standard approach can go wrong. The PwP has an appointment which happens to be on a day when the patient is good. The doctor concludes that treatment should go unchanged. Unless things get very bad, the patient puts up with this low QOL for another six months; during which time he/she deteriorates further.

Let's look at a patient led approach. Doctors must convince themselves that the patient will comply with a flexible regimen, and prescribe for this. So, for instance, if the present daily dose is 3x100 mg, the patient has the flexibility to stay where he/she is or to increase the daily dose to 4x100 or 5x100 mg.

In the patient's ideal world patients would educate themselves to manage the disease. This is possible for a disease such as Parkinson's which is slowly progressing, giving time for them to become expert in their disease.

Mogul1 profile image
Mogul1 in reply to johntPM

Has anyone run into the situation where the Dr. is pushing DBS? I don't remember s

in reply to Mogul1

Yes

Godiv profile image
Godiv in reply to Mogul1

Yes and it kind of shocked me.

Mogul1 profile image
Mogul1 in reply to Godiv

It surprised me too. I don’t see it as a solution. It feels more like being put out to pasture. Mostly, I wonder why I haven’t read or heard any recipients here or anywhere else describing their success?

Godiv profile image
Godiv in reply to Mogul1

Maybe it’s a solution, but it’s a very dramatic one. I thought my doctor brought it up brought it up rather lightly. Initially it was we’re going to try this and we’re going to try that and then it was suddenly DBS. But as a friend told me maybe they’re having better luck with people who are in earlier stages. I don’t know I can’t I can’t get it out of my mind as a last resort. And maybe that’s not the way to look at it now. It is interesting to hear from you and friends that other doctors are saying the same thing.

glenandgerry profile image
glenandgerry in reply to Mogul1

Yes

Thal profile image
Thal

My movement disorder needs physical fitness, healthy eating, occupational therapy first,. ... otherwise I'm driving down a pot holed road with a blown motor near empty relying on a booster to keep me going...

9Rafiki9 profile image
9Rafiki9

Thank you so much for recommending Dr Ahlskog's book. It's amazing how much you learn/discover throughout the book. Actually enough to question even challenge my doctor about my current treatment. Fantastic read ...... My new bible !

AmyLindy profile image
AmyLindy in reply to 9Rafiki9

What is the publication date? Seems it’s been around a long time... perhaps new versions are being published?

jimcaster profile image
jimcaster in reply to AmyLindy

Hi, Amy. It looks like the most recent edition was published in 2015.

m.barnesandnoble.com/w/the-...

ddmagee1 profile image
ddmagee1

Thanks for the info. RoyProp

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