The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.
I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.
I just want to say THANK YOU for making this video and telling us what it is. I really never knew that it is so bad. I just thought its just fatigue. It is truly inappropriately named.
As a patient of Ulcerative colitis ( a disorder that you can't even explain) and father of a boy with Autism spectrum, I know and understand what it feels like to be told that there is no cure, pretty bad place to be in this world.
I hope, we will find why these conditions happen in the first place and some medications show up in the market.
I just want to say THANK YOU for making this video and telling us what it is. I really never knew that it is so bad. I just thought its just fatigue. It is truly inappropriately named.
ReplyDeleteAs a patient of Ulcerative colitis ( a disorder that you can't even explain) and father of a boy with Autism spectrum, I know and understand what it feels like to be told that there is no cure, pretty bad place to be in this world.
I hope, we will find why these conditions happen in the first place and some medications show up in the market.
Thank you for posting, Chris. I actually had to reupload the video again recently, so it has a new link location:
ReplyDeletehttp://www.youtube.com/watch?v=EPcCHKOJmDA
Thanks for your patience, and thanks again for your support!!