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Janet wrote: "what to do?" To Janet and to others, your off state is your "biological state" your on state is your "chemical state" >How would you rate "your ability" in doing the following tasks or functions? > >Put one number in each box. The numbers mean: > >1 = You are fully capable of doing this function >2 = You have minor dificulty doing this function. >3 = You have moderate dificulty doing this function. >4 = You have serious dificulty doing this function. >5 = You have severe dificulty doing this function. > Janet, I've never seen you function but with the below description my guess is: [a medical form has already been completed by my neurologist who described advanced parkinson's, with *severe* episodes of akinesia, bradykinesia, and dyskinesia, resulting in an inability to work now and in the foreseeable future] 3___ Sitting 3___ Standing 5___ Walking 5___ Bending 4___ Lifting 4___ Carrying 5___ Using Hands and Fingers 1___ Breathing "your ability" is one thing... "Sinemets ability" is something else... Margaret Tuchman (55yrs, Dx 1980) posted this on the list some time ago and I saved it, so I'll use it as an example now. It's the Unified Parkinson Disease Rating Scale (UPDRS). Which as Margaret says,"You will, no doubt, recognize this rating scale as the "script" we perform during our "audition" when visiting the neurologist." The UPDRS is a rating tool to follow the longitudinal course of Parkinson's Disease. It is made up of the 1) Mentation, Behavior, and Mood, 2) ADL and 3) Motor sections. These are evaluated by interview. Some sections require multiple grades assigned to each extremity. A total of 199 points are possible. 199 represents the worst (total) disability), 0--no disability. The problem is I'd have to observe you to fill out this form. And since I've never laid eyes on you, I'm making an "internet" assessment. I'll pretend that as a nurse I've observed you in your home for a few days and have witnessed the effects of Parkinson's Disease on your body and can document the effects of a lack of dopamine [which probably is 90+%]. My purpose is to document the degree of disability you now have, and the damage this disease has caused, the stage that you are in with the disease. The purpose is to measure the disease, not to measure the effectiveness of palliative medication, measure the human spirit, or measure how well you compensate. This is an illness perspective, not a wellness perspective. In all fairness this evaluation needs to be done by a doctor/nurse, with family and the patient contributing, not the person affected by this disorder. My sister did not know her gait had changed, she did not know she wasn't swinging her arms freely when she walked, she did not know her sweet smile at me had changed to something I didn't recognize. She saw herself reflected in a store window and said, "I thought that was an old woman, I had no idea that was me." (she's 51) as you said yourself: "the problem is the black/white answer format allows for no shades of grey" Janet, I don't think anyone can objectively evaluate themselves... this is my opinion and I am a 'medico' :-) I'm sending this in 2 parts to the list. This is: Part 1 of 2 Gail Vass, RN, BSN