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10-08-2009, 06:27 PM | #1 | |||
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(one is able to comment upon this small article on a British medical site--and who is the "cure parkinson's trust"?)
http://www.healthcarerepublic.com/ne...ent-treatment/ Parkinson's patients want more involvement in treatment Tom Moberly, healthcarerepublic.com, 08 October 2009, 12:10pm People with Parkinson's disease want to be more involved in decisions about their treatment.... The Cure Parkinson's Trust surveyed 84 people with Parkinson's disease and their carers... Around two thirds of those responded said that they wanted to be more involved in treatment decisions during their appointments. A similar proportion said there was a lack of take-home materials available to improve their understanding and management of the condition. As a result these patients said they felt discouraged, frustrated and anxious after appointments.
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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"Thanks for this!" says: | Sasha (10-08-2009) |
10-08-2009, 09:39 PM | #2 | |||
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Cure Parkinsons Trust is an organization in the UK founded by Tom Isaacs, a person with Parkinson's disease.
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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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10-09-2009, 04:04 AM | #3 | ||
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Tom Issacs is a high profile PWP over here in the UK and also works with EPDA the european asssociation, CPT has been involved with Cogane trials, from what I can seen he works tirelessly to raise the profile of PD across the board - CPT is the organisation through which his efforts and those of people involved are channelled.
http://www.cureparkinsons.org.uk/ |
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"Thanks for this!" says: | EnglishCountryDancer (10-09-2009), jeanb (10-09-2009) |
10-09-2009, 06:23 AM | #4 | |||
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In Remembrance
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Tom Isaacs is our own "TommyI" or "TomI" or something like that (too early in the day to look it up) and is a jolly good fellow. Walkedthe coast of England backwards on his hands or something like that shamelessly raising enough money for PD research. He's "good people."
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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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10-09-2009, 09:16 AM | #5 | |||
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A loud and warm "thank you!" to Tom Issacs for completing this survey and having results noted in the media. madelyn
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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