Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 06-11-2013, 07:17 AM #1
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default Early Versus Delayed Diagnosis and Treatment of Parkinson’s Disease: What You Need To

interesting discussion of treatment options, difficulties designing neuroprotective trials
http://www.uspharmacist.com/continui...ssonid/105986/
soccertese is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
crimsoncrew (06-13-2013), GerryW (06-11-2013)
Old 06-11-2013, 11:10 AM #2
cbrf1wr cbrf1wr is offline
Junior Member
 
Join Date: Dec 2012
Posts: 35
10 yr Member
cbrf1wr cbrf1wr is offline
Junior Member
 
Join Date: Dec 2012
Posts: 35
10 yr Member
Default

I would love to see a study of early diagnosis young onset that received DBS before any drug therapy was initiated vs any drug therapy.

I'm on Azilect and it works, but would rather not be taking this drug. Can't see where taking any drug that has side effects and potential dangers is any better than having your brain do what it is supposed to do naturally simply with electric impulses. Would also like to see if there are any neuroprotective aspects to DBS. Everyone says there are none, but where are the studies to back this up. Most people only receive DBS when they have completely exhausted the drug therapy options. By then any neuroprotective capability is already exhausted and cannot be measured. In other words you are too far gone for it to make a difference.
cbrf1wr is offline   Reply With QuoteReply With Quote
Old 06-11-2013, 12:23 PM #3
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
Default

Quote:
Originally Posted by cbrf1wr View Post
I would love to see a study of early diagnosis young onset that received DBS before any drug therapy was initiated vs any drug therapy.

I'm on Azilect and it works, but would rather not be taking this drug. Can't see where taking any drug that has side effects and potential dangers is any better than having your brain do what it is supposed to do naturally simply with electric impulses. Would also like to see if there are any neuroprotective aspects to DBS. Everyone says there are none, but where are the studies to back this up. Most people only receive DBS when they have completely exhausted the drug therapy options. By then any neuroprotective capability is already exhausted and cannot be measured. In other words you are too far gone for it to make a difference.
they just had a study recommending DBS earlier in the course of pd. not every pd'er can qualify for a DBS, one requirement is a strong response to L-DOPA, something that would be hard to detect imho with someone just diagnosed with pd. plus very hard to measure small differences in people with early pd, you'd have to have a very large trial.
plus you'd have to have sham DBS's, ain't going to happen.
DBS has side affects., do some research.
i think the strategy is to do the best you can on exercise/drugs/supps/alt-therapy, go to DBS/l-dopa pump if possible when drugs become less effective, stay as healthy as possible, the whole time hoping for a disease altering treatment. and support pd research, volunteer for trials.
just curious, how long have you been on azilect and what benefits/side affects are you experiencing?
soccertese is offline   Reply With QuoteReply With Quote
Old 06-11-2013, 02:31 PM #4
cbrf1wr cbrf1wr is offline
Junior Member
 
Join Date: Dec 2012
Posts: 35
10 yr Member
cbrf1wr cbrf1wr is offline
Junior Member
 
Join Date: Dec 2012
Posts: 35
10 yr Member
Default

46yo. Diagnosed 10/12. Symptoms started about 2-3 years ago. Family history of PD Father and 2 of 3 uncles. Both Uncles have passed, Dad still hanging in there.

I'm Tremor dominant left side with a small amount of stiffness. Azilect helps tremor for sure. Without it left side leg, arm, and hand would be shaking all the time basically. With Azilect tremor only when nervous or trying to hold something very still or type. Also tremor when walking. Some left leg tremor not all the time.

I have seen first hand what happens with the l-dopa drug route with my family. I would sign on DBS in a heartbeat if it was an available treatment option.
cbrf1wr is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (06-11-2013)
Old 06-11-2013, 06:45 PM #5
MeAndPD MeAndPD is offline
Junior Member
 
Join Date: Mar 2012
Location: London, UK
Posts: 63
10 yr Member
MeAndPD MeAndPD is offline
Junior Member
 
Join Date: Mar 2012
Location: London, UK
Posts: 63
10 yr Member
Default 23andme DNA testing

Have you considered you and your dad getting the DNA test - free for people with PD.

https://www.23andme.com/pd/

I got my 90 yr old dad to do the "spit" test - neither of us had the LRRK2 gene, so maybe just coincidence we both have PD?

Brian



Quote:
Originally Posted by cbrf1wr View Post
46yo. Diagnosed 10/12. Symptoms started about 2-3 years ago. Family history of PD Father and 2 of 3 uncles. Both Uncles have passed, Dad still hanging in there.

I'm Tremor dominant left side with a small amount of stiffness. Azilect helps tremor for sure. Without it left side leg, arm, and hand would be shaking all the time basically. With Azilect tremor only when nervous or trying to hold something very still or type. Also tremor when walking. Some left leg tremor not all the time.

I have seen first hand what happens with the l-dopa drug route with my family. I would sign on DBS in a heartbeat if it was an available treatment option.
MeAndPD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
soccertese (06-12-2013)
Old 06-12-2013, 07:43 AM #6
Israel Israel is offline
Junior Member
 
Join Date: Jan 2013
Location: Vermont
Posts: 25
10 yr Member
Israel Israel is offline
Junior Member
 
Join Date: Jan 2013
Location: Vermont
Posts: 25
10 yr Member
Default

I am interested regarding the DNA test you mentioned. I will get some input from my wife. What are your thoughts as to having the test done? Have there been other members of this forum that have had it done? Any input would be appreciated. Israel
Israel is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
ot Diagnosis Without Treatment: The Perils of New Tests for Early Alzheimer’s Disease soccertese Parkinson's Disease 0 07-27-2010 10:25 AM
Non-invasive Method For Early, Serological Diagnosis Of Parkinson’s Disease Developed Stitcher Parkinson's Disease 0 06-13-2009 08:25 AM
Diagnosis Parkinson's Disease: You Are Not Alone Video Diagnosis Parkinson's Diseas Stitcher Parkinson's Disease 0 02-02-2009 12:56 AM


All times are GMT -5. The time now is 01:40 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.