Tuesday, August 02, 2005

DISABILITY; Use of Disabilitykey Workbook to document impact of disability symptoms

In many previous blogs we have discussed the need to communicate the impact that your symptoms of your disability, condition, illness, etc. has on your normal daily living activities. We have talked about what is called the "Expert Patient"; of the need to become an informed patient to better work with your health care team.

In future blogs we will be talking about a new world-wide endeavor to change the medical services process from what used to be called "illness centered" or "doctor centered" medical care to "patient centered" care.

Interestingly enough, while I was researching this topic, my very own brother asked me a question that dovetails specifically with this topic. He is having problems with his feet. He has a compressed back disk that presses on a nerve; he also has what the doctors call "tarsal tunnel" syndrome (this is the exact same thing as "carpal tunnel" syndrome, except it is in your ankles and not your wrists). His problem is that his PCP (primary care physician) wasn't an expert on feet, and sent him to physical therapy; this worked for a while, but not long term, so he was then sent to a neurologist who knew nerves; he was also sent to a Surgeon who knew ligaments and bones and joints. The problem was, each "specialist" knew his/her own specialty, and recommended it as the "best fix"! NO ONE LOOKED AT MY BROTHER AS A "WHOLE" PERSON, giving him the pros and cons of all options so that he could make an informed decision. His doctors all appear to be practicing the "old" type of health care delivery.

I was able to provide my brother with some advice about the "patient-centered" type of medicine where he would get exactly what he was looking for, that I will be providing, in general terms, to all of you in future blogs. BUT, what I also told him is that he needed to compile information and become an "expert patient" if he expected to receive the maximum benefit of patient-centered medicine.

I referred my brother to my website: www.disabilitykey.com, and to my ebook, Disabilitykey Workbook. I suggested that getting and using the "Doctor Key" chapter of the Workbook would help him describe IN DETAIL his condition symptoms, the impact his symptoms have on him, how that impact effects his normal daily activities, and what, if anything, he can do to mitigate the impacts. The document in the Workbook is called the "Symptom Impairment Matrix"; there is a blank form for him to use to document his symptoms. AND, if he isn't sure what is meant in each column, I also have included a specific example - my own! Since I have had Multiple Sclerosis for over 45 years, I have many symptoms, and my example matrix is a great way to see how by documenting what is happening with you, you can better communicate to all those around you - especially your Doctor!

As I have said above, in future blogs I'll provide you with links to sites that might give you some ideas about options that you might want to discuss with your doctor (the links have the ability to look up different illnesses and conditions). I'll be giving you more information about the transition from doctor or illness centered medicine to patient centered medicine. Also, will be some questons you can ask your own doctor about whether he/she knows about, and is willing to participate with you in a patient-centered process.

So, if you, like my brother, need to begin documenting your symptoms, you do not need to start from scratch. If you have questions during the process, comment on this blog, or add another to this website.

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