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Old 04-07-2014, 09:18 PM
johnt johnt is offline
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Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
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Tupelo3,

I have never proposed that anyone not suffering from hypertension should use isradipine in the hope that it slows the progression of their PD. Rather, I've suggested that PwP with hypertension should discuss with their doctors using this rather than other hypertensive drugs.

My own position is that hypertension was diagnosed at the same time as PD. I was put on an ACE inhibitor. This controlled the hypertension. But when I went on levodopa my blood pressure dropped further taking me into hypotensive levels. One day, on a long walk, I fainted. I stopped the ramipril and now have a nice BP of 110/75. I don't see isradipine as being of any use to me.

Regarding supplements, I barely use them, sometimes turmeric, but only at normal cooking levels. I sometimes use music therapy, strobe lighting, TENS machine, forced exercise of the arms. I get mixed results from these. The two "alternative" approaches that I do rely on is walking, I walk everywhere, and socialising.

You appear to think that the trial will find THE answer as to whether isradipine is efficacious for PwP. You may be right. I'm skeptical, however, I suspect that PD is a collection of diseases - some of which may respond positively to a treatment, while others respond negatively. This makes it difficult to do better overall than the placebo effect.

It seems to me better if trials are based on the individual - properly monitored, properly measured - but with the aim of finding what works for that person, rather than hoping to find a treatment that fits all.

I find it difficult to understand why a trial should take 3 years. What extra information will the last two years give? I've posted previously on high frequency testing - measuring 24/7 rather than every 3 months, say.

My position is clearly influenced by the fact that I'm 9 years post diagnosis. Even if a wonder drug that stops all progression is discovered, tested, given regulatory approval and gets into pharmacies, at an affordable price, tomorrow, I will still be affected badly by PD.

It's this sense of urgency that I wish to get across.

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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