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07-15-2009, 11:34 AM | #1 | |||
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In Remembrance
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Ron- That's the first time that I had seen their website. I think this quote is the smartest statement I've ever read about PD research:
"Conventional approaches may have limited potential: major advances are not made on bandwagons, but by thinking the unthinkable, not accepting dogma, and reviewing the obvious." Why not ask them if they'd be interested in working with some of us to develop some sort web based tests to add to what they are doing with you? Webcams are cheap now, so it could have video input as well. In fact, since they are relying heavily on video already, it could serve as the "Rosetta Stone" to merge the web data into their existing database if we set it up right. And it wouldn't cost them anything. Heck, we could make a little noise about how clever the approach is and attract a little money.....
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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07-16-2009, 01:09 AM | #2 | |||
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In Remembrance
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Rick,
I very much doubt if the team at Kings would be able to take any more on. The two leading Docs are at the Hospital at around 7-00am and work through until late at night. I have seen them go often without lunch. They work weekends and have not taken a holiday in years. They desperately need more funds to complete their work, and spend a disproportionate time fighting to get the mpney they need. James Bowthorpe who is a student member of the team saw how hard they worked, and he was so incensed at the lack of funds, he decided to cycle round the world to raise money. He is on course to slash the record, and is cycling up to 150 miles in one day for 5 months. Much more than the Tour de France cycle race do in one day, and their race only lasts 3 weeks, not 5 months. He has around 40 Kg of luggage and frequently camps on the side of the road overnight. He has just landed in Canada, then will cross the USA coast to coast. JUst a shame after all this effort, he has only had 2% of his target of £1.8m donated. He will cycle 18,000 miles in all. Ron
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Diagnosed Nov 1991. Born 1936 |
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