Patient Self-Advocacy - WHAT is it; HOW to do it?

I HIGHLY RECOMMEND self-advocacy for EVERYONE, but especially for people with disabilities!! Stanford Univ. in the US came up with a program entitled: Chronic Disease Self-Management - see this link: http://patienteducation.stanford.edu/pr...ograms/cdsmp.html for more information.

Canada, Australia, and the UK have a very similar program called "Expert Patient"; see this link: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Aboutus/MinistersandDepartmentLeaders/ChiefMedicalOfficer/ProgressOnPolicy/ProgressBrowsableDocument/DH_4102757 or this site: http://www.expertpatients.co.uk/

Here is the BEST website that I've found that explains the concept in general and has TONS of info; from New Zealand:

http://www.healthnavigator.org.nz/keeping-well/generic-self-management-course/research-additional-information

Finally, I've personally written about this concept in my own blogs on my website: http://www.disabilitykey.com/ - the archived blog way back in 2005 or so. Here's a link to that archived Blog; scroll down about 1/3 of the way to the AUGUST 16, 2005 entry: http://www.disabilitykey.com/blog/

I've taken the Stanford course and am a Certified Chronic Disease Self-Manager Trainer. With this knowledge, I've created a FREE ebooklet about how best to become a Self-Advocate. For a copy, please email me: csmagura@yahoo.com.

Finally, I find that most people have problems getting their doctors to actually LISTEN to them - let alone partner with them. It's more prevalent in the US and is called "Doctor (or illness)-Centered" medicine, versus PATIENT-CENTERED medicine. Canada, the UK, Australia and New Zealand are MILES ahead of the US when it comes to patient-centered medicine.

Here's a current study: http://findarticles.com/p/articles/mi_m0999/is_7284_322/ai_71820692/

Why I'm learning about the UK Welfare and Disability systems

GREETINGS! As an Expert on the US Social Security (Welfare & Disability Insurance) systems, I'm now learning about what's going on in the UK for 2 reasons: 1) to be better prepared to deal with the upcoming US "Natn'l" Health Care System; and 2) to provide my disability insurance success process - ALL INFO PROVIDED FOR FREE - to you in the UK!

As a way to learn about me, please see my facebook page: Disabilitykey

I've been doing this Advocacy for almost a decade, and have reached over 4,000 folks WORLDWIDE.

I have both PERSONAL expertise with the system - on disability for Multiple Sclerosis and Polyneuropathy (getting approval the 1st time around in under 30 days when the "normal" timeframe is 3 1/2 years); and PROFESSIONAL expertise - a Human Resources Auditor and Executive for 30+ years.

Please check out my website: http:www.disabilitykey.com AND I'm new to this facebook organization: http://www.facebook.com/?tid=1589005602646&sk=messages#!/group.php?gid=100236785459

Please email me: csmagura@yahoo.com to get forms, examples, and process instructions on how to get disability insurance for which you qualify. Looking forward to getting to know you and your concerns better!

OUTSTANDING Health Survey Website: AmIHealthy.com

While researching disease-specific quality of life (QoL) websites, I came across this OUTSTANDING website wherein you can register - all for FREE - take health and QoL questionnaires, get feedback, track progress, and print out analyses for your doctors! Here is the website: https://www.amihealthy.com/

Quality of Life Survey Tools

If you are interested in measuring your own Quality of Life, here is a link to a website that offers 3 links to different surveys. Copy the link and post it into your web browser and it will take you to the website:

http://www.musc.edu/dfm/RCMAR/GeneralTools.html

How I CAN do what I do....

Many of you know me as the "Social Security and ANY type of Disability Insurance Guru"! If you have ever wondered how I - with dx's of both Multiple Sclerosis and Polyneuropathy for over 45 years - and, who only has about 2 - 3 cognitive hours available DAILY, can do what I do - I'll share my secret with you.

FIRST of all, what I am accomplishing requires: 1) a strong spiritual focus; 2) a positive outlook on life; and 3) a willingness to achieve a QOL (Quality of Life) that allows me to focus externally on others.

I achieved all of this by being what I call "successfully 2-sided"; I focused on what I CAN'T DO to get the resources (including disability insurances and a "patient-centered" relationship with my doctors); THEN I focus on what I CAN DO to achieve a positive QOL. Next, I focused on my spiritual life. Finally, I figured out what I was good at doing; what my spiritual life was FORCING - lol - allowing - me to do, and I set about doing it. (Note: I joke about the "forcing", but it is really true. I had to loose all of my physical resources that allowed me to think that I could "fix/resolve" anything. After being angry and frustrated for about a decade, I reached the epiphany that allowed me to stop my "pitty party".)

This led me a decade ago into establishing my DisabilityKey initiatives - as a Nationally Recognized Disability Advocate, Educator, and Expert Witness. To find out more about YOUR acquiring either Disability Insurance(s) for which you qualify, and/or how to achieve your OWN patient-centered relationship with your doctors, please email me: csmagura@yahoo.com.

I have my own daily prayer/song that summarizes what and how I can do what I do:

My Abba up above,
Holy Spirit within me;
Both guide this Servant's hands and mind to show
Disabled HOW to go!

THANKS for visiting this Blog entry. Hope that it just might trigger an idea within YOU!

ALERT: NEW TREND in US Medicine: Putting Patients First!

This new trend is called "Patient-Centered Medical Homes". Now, this just means putting the PATIENT at the center of all things medical. Consider this explanation from the article:

[Patient] care is team-based, preventive and comprehensive, rather than one-on-one, fee-for-service or managed. Record keeping and sharing is seamless and electronic, rather than unwieldy and paper-based. Clinicians from the team are easily accessible in person, on the phone or via the Internet within 24 hours, rather than hidden behind labyrinthine automatic answering services and overbooked clinic schedules.

Here is the link to the NEW YORK TIMES article: http://www.nytimes.com/2010/07/15/health/15chen.html

(Note: just copy the url and past it in your browser.)

Brain Changes in MS May Spur Depression

If I did the "insert" correctly, you should be able to click on the link below and go directly to the link and read the article. If my cognitive ability failed me, please copy and paste the link into your search bar.

This article - from a fantastic MS research website that I subscribe to - talks about the "Brain Changes" in the brain of the MS patient that may spur depression.

Most of us with MS ALREADY KNOW that we also suffer from depression. Hopefully, this article just might help MS folks better communicate with their doctors.


http://mscare.org/cmsc/index.php?option=com_healthdaynewsfeed&Itemid=1397&task=read&id=640857