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12-13-2008, 07:19 PM | #1 | |||
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Senior Member
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I'm putting this in a new thread so it will be easier for everyone to find it.
patient survey on Fox Foundation website
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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"Thanks for this!" says: | MRogan (12-13-2008) |
12-13-2008, 10:43 PM | #2 | |||
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Senior Member
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Thank YOU, Dr. Rogan!
Jean Quote:
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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12-14-2008, 12:04 AM | #3 | |||
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Senior Member
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at this link
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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12-14-2008, 12:01 PM | #4 | |||
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In Remembrance
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I looked over the bios of the scietific advisers while I was there and was a little dismayed. Of the two dozen or so, I am sure that most are good folk but there were several with conflicts as employees of Big Pharma. Most disturbing, however, was the total dominance by neurologists? What if, as looks more and more likely, PD is not strictly neurological? No immunologists? Endocrinologists? GI guys? Anyone up on Carvey's work on pre-natal immune response? Do they know of our stress sensitivity? The role of gut peptides? No matter how professional you are, if you don't know the questions then your answers will be incomplete.
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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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"Thanks for this!" says: | Ibken (12-16-2008) |
12-14-2008, 09:41 PM | #5 | ||
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In Remembrance
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I have posted the survey link on the PD Pipeline site home page and sent it to Bill Bell, who I think will put it in the NWPF newsletter. With a little help from everyone, we should be able to spread this link far and wide. Also contacted Tom Isaacs and asked that he pass it along in Europe. Lee, if you read this, maybe you could start the ball rolling in Australia.
Each of us could send it out to our personal email list. Dr. Rogan are you sending to the PD organizations, like PAN, PDF, NPF, etc.? Dr. Rogan, I've received mixed reactions about the questions involving us helping investors and funders. I'm sure Perry Cohen could answer this question at more length than some of us. There are patients in every area, but I'm wondering if the average patient has a solid grasp of how he/she can play entrepreneur. Unless one is a patient and an entrepreneur....lol. I would hope this isn't a prerequisite to some type of participation. I understand that money determines everything and MJFF does it better than anyone. It's a different type of expertise that many of us here have to offer tho. I don't think we ever claimed that we could bring in lots of money, but who knows - if we send the link out enough, the survey might bring in a jackpot or two or a hundred. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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12-16-2008, 03:34 PM | #6 | ||
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In Remembrance
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Bumping and hoping you are responding in numbers, regardless of how you may feel about it one way or another presently. This is a start. Advocates need your voices here.
thank you, p
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paula "Time is not neutral for those who have pd or for those who will get it." |
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