Hence forth, things I shall ignore. - Cure Parkinson's

Cure Parkinson's

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Hence forth, things I shall ignore.

MBAnderson profile image
15 Replies

In vivo and in vitro studies - because the contents of petri dishes, test tubes and genetically modified animals don’t get Parkinson’s and because legitimate ‘breakthroughs’ which are extremely rare won’t make it to market in my lifetime. If you are YOPD don’t give up.

Magazine & newspaper Articles – because nearly all have misleading (hype) titles and many incorporate misleading content. Researchers/drug companies need publicity to raise money.

Studies which rely wholly on the UPDRS – because he UPDRS does not measure constipation, depression, anxiety, or any non-motor symptoms which account for most symptoms and because any drug company knows or should know it’s limitations. Drugs that are measured solely on the UPDRS look more effective which explains why it is still in such broad use.

The MDS UPDRS is a vast improvement. Look for this in combination with the Hoehn and Yahr (HY) scale in the studies you read.

“The MDS‐UPDRS specifically covers a greater number of PD manifestations, including non-motor symptoms (NMS); better discriminates slight/mild manifestations of PD compared with the original UPDRS; resolves ambiguities and gives clear instructions for both raters and patients; and assesses all items in a uniform way.”

ncbi.nlm.nih.gov/pmc/articl....

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MBAnderson profile image
MBAnderson
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15 Replies
chartist profile image
chartist

Here is a link to the more comprehensive MDS-UPDRS testing in case anyone is interested in taking it at home for free :

movementdisorders.org/MDS-F...

Art

LAJ12345 profile image
LAJ12345

testtubes and cells don’t suffer anxiety. I think anxiety is a big factor in PD

vwolff profile image
vwolff in reply toLAJ12345

You may be right, I feel that anxiety may be the root of PD.

WinnieThePoo profile image
WinnieThePoo

I agree. Managing anxiety is a key tool to improve PD

park_bear profile image
park_bear

Most animal and cell culture studies are worthless because they use pre-treatment of the test substance before applying the toxicant, thus preempting the Parkinson's toxic cascade before it even gets started.

The MDS-UPDRS Test was first published in 2008, so hopefully all recent research is using this version:.

movementdisorders.org/MDS/M...

MBAnderson profile image
MBAnderson in reply topark_bear

great link

Boscoejean profile image
Boscoejean

My husband has tremors and some difficulty with walking. We believe he has some symptoms that may be the result of Parkinson's affecting the whole system. He has an eye symptom that could be attributable to changes in the retina but it could also be attributed to his age. In the past he had experienced constipation and GERD but with help from appropriate practitioners he no longer has these to the extent that they are a problem.

Buckholt profile image
Buckholt

our expectations for new treatments seem to be very low, when an industry measures success based on MDS-UPDRS scores and careful statistical analysis of data. On the other hand, what we are all really waiting for, is a breakthrough drug or therapy where the results are so obvious, so overwhelming that you can see with the naked eye improvements in condition, that it’s not necessary to do any maths, ( math for those is the US!)

claudejgreengrass profile image
claudejgreengrass in reply toBuckholt

I agree and fail to understand why the MDS imposes such draconian terms in regards to the use and/or modification of the MDS-UPDRS

Are they afraid of a non-sponsored breakthrough?

HekateMoon profile image
HekateMoon

Great questioner. Will print a copy for my dr since i only see neuro every 6 mths. Can be also good to self evaluate.

MarionP profile image
MarionP

Good for you anderson, it looks like you have finally learned the lesson: "Everybody sells."

Despe profile image
Despe

Gosh, Marc, you couldn't have said it any better! Thumbs up 👍👍

brettnmi profile image
brettnmi

Thank yoiu for this helpful post

Do you still accept people into the support group? The link I have doesn’t work , and I really liked the grouin

MBAnderson profile image
MBAnderson in reply tobrettnmi

Yes, you are welcome.

This is the link we all use. I'd be happy to schedule a time for us to test it if you like?

us02web.zoom.us/j/833522248...

brettnmi profile image
brettnmi

Sorry, I wasn’t clear. Im sure the link works. I had the wrong on

Thavks!

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