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06-11-2013, 07:17 AM | #1 | ||
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Magnate
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interesting discussion of treatment options, difficulties designing neuroprotective trials
http://www.uspharmacist.com/continui...ssonid/105986/ |
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"Thanks for this!" says: | crimsoncrew (06-13-2013), GerryW (06-11-2013) |
06-11-2013, 11:10 AM | #2 | ||
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Junior Member
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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. |
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06-11-2013, 12:23 PM | #3 | ||
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Magnate
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Quote:
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? |
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06-11-2013, 02:31 PM | #4 | ||
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Junior Member
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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. |
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"Thanks for this!" says: | soccertese (06-11-2013) |
06-11-2013, 06:45 PM | #5 | ||
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Junior Member
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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:
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"Thanks for this!" says: | soccertese (06-12-2013) |
06-12-2013, 07:43 AM | #6 | ||
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Junior Member
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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
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06-12-2013, 08:25 AM | #7 | ||
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Senior Member
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LRRK2 is not the only gene associated with the development of PD, and there are expected to be more. I think 23&me are still taking PwP onto its programme, check it out.
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06-12-2013, 08:26 AM | #8 | ||
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Magnate
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Quote:
they tested for more genes than LARK including BRACK variants, they give you a report on quite a few diseases and whether these genes increase your chances over the norm of getting them. |
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06-12-2013, 09:21 AM | #9 | ||
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Senior Member
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It is still free for PwP according to:
https://www.23andme.com/pd/ I did mine almost at the start, 4 years ago. Excellent idea. Excellent implementation. John
__________________
Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | soccertese (06-12-2013) |
06-12-2013, 09:44 AM | #10 | ||
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Junior Member
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Yes I have done the 23andme few months ago. Negative lrrk2. Positive on others though. Also doing study out of WA state for DNA markers for PD.
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