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Old 06-22-2009, 01:37 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
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Assuming that we stick to plan and only use posted material, it is probably going to come down to who gives permission since that determines what we have to work with. So come on, you big posters! (I feel like I'm working the local PBS fundraiser. )


Quote:
Originally Posted by Sasha View Post
Here are some ideas for chapters or whatever that would appeal to me - off the top of my head:

1. a very brief history of the disease - discovery and naming, no treatment days, advancing knowledge and tx possibilities

2. First symptoms - the stuff that puzzled us all - and often the first 10 docs we saw, too

3. Diagnosis - age, place, methods, how we were told, our reactions and our families' reactions

4. Treatments - standard and benefits/problems

5. Treatments - alternative and complementary

6. Treatments - development of and clinical trials - and fraudulent modalities

7. Social relations - with friends and family

8. Personal/intimate realtionships

9. Work

10. Disability

11. Community Support and advocacy

12. Research (maybe sections divided out by main areas) and how to access information

13. Personal hopes and what we do to sustain ourselves and one another socially, emotionally, vocationally, spiritually, avocationally....etc


What do you think? Am I way off the mark? How do others envision this?
__________________
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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