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Old 01-02-2012, 03:37 PM
staurus staurus is offline
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Join Date: Jan 2012
Location: England
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10 yr Member
staurus staurus is offline
New Member
 
Join Date: Jan 2012
Location: England
Posts: 2
10 yr Member
Default People with experience of long term DM or LDN?

Ashleyk aka John, Thank you very much for starting the original thread back in 2006:

"Dextromethorphan used for PD Protection"

This looks like a very important topic and I have just joined this forum because of it. I have a relative (late 70s) who was diagnosed with parkinsons around July 2010. Although still at an early stage, there is noticable deterioration since then and we would be very interested in anything that might slow or stop it. To be more precise she was perscribed Madopar (this in UK)
12.5/50 twice a day at diagnosis. This helped her walking a lot but after about 14 months it has deteriorated to the point where dose has been raised to 12.5/50 three times a day.

I was quite excited by this thread, because as people were taking LDN and DM back in 2006, then by now, over 5 years later, enough time has passed to get hopefully some feeling for whether there is a neuro-protective effect.

QUOTE=ashleyk;827517]
To come up to date, Wendy, stopped taking LDN about a year ago because she didn't think it was doing much. I believe it has slowed her progression but there is no way to know. She has progressed especially this year and has had a number of serious falls. [/QUOTE]

Sorry to hear about Wendy's progression. Do you think though, as you wrote "especially this year", that progression has become more rapid after stopping the LDN?

I don't want to be intrusive but I think it would be really helpful if you could post a rough description of her condition (including drug doses needed) when she started taking LDN and how long that was after diagnosis, how long she took LDN for, and a rough description of her condition when she stopped taking it.

If enough people who have been taking DM and LDN could do this we could perhaps begin to get a picture of how their progression compares with the typical progression of someone not taking these.

Of course anecdotal evidence will never be as good as a double-blinded placebo-controlled trial but, in the absence of any such trial, this is all we have. It seems to me to be valuable. And it's valuable even if it shows that these things do not work. At least we would know.

Anyway thank you everyone who has shared knowledge on these topics

David
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