Thursday, March 3, 2011

Doctors make me angry!

OK, maybe the title should be; Everyone, everything, makes me angry! At least that is where I have been the last number of days, weeks, months, I can't remember. In any case, we went to see my Neurologist yesterday. It was my usual, planned, every four months visit. The same inane questions, the same motor skills test, the same stuff! When I ask questions about my progress, the future, I don't get a straight answer. I realize she is a busy doctor, but those 30 minutes are mine. My insurance and my money paid for them. I should expect reasonable attention and service, right? It may be me, but I get the feeling that every time I go to see her, I have to prove that I am afflicted with this disease that she and another doctor, along with two PHD Psychologists, told me I have and prescribed tons of medicine for. Not to mention that this Neurologist filled out forms and a letter that got me a disability retirement from the Federal Office of Personnel Management, (OPM) and the Social Security Administration, on the first application!.. No lawyers, no appeals, no delays! So why do I have to prove that I am sick every four months!! I am so depressed and upset over this that I am seriously thinking about stopping all of my medications and letting the cards fall where they may. Last month, or the month before, there was a problem with the pharmacy and I was without my Arecept, (actually Razadyne, but most of you don't recognize that name) for four days and my wife and I noticed a decline in my cognitive abilities! So, if I quit taking ALL of them for the next four months, she should have no problem recognizing that I have a problem, that SHE diagnosed! Of course, I will be drooling on my shirt, pissing in my pants, and unable to respond to simple commands! But, maybe that's what she wants. In any case, as I said earlier, I am angry and searching for a way to deal with that anger. Quitting seems to be my only recourse!


  1. I don't care for traditional doctors either... not the ones in big hospitals anyway.

    My mom isn't on any pharma drugs for her dementia. She takes Ashwagandha instead of Aricept. It has no side effects and it's pretty inexpensive. You can buy it at Whole Foods or online in a liquid form.

    Instead of the excelon patch, my mom has Phospyltidal Choline in her oatmeal every day.

    To improve cognition, she takes another herbal mixture called Brain Powder by Vital Nutrients.

    She is doing well and goes to Adult Day Healthcare every day. She doesn't suffer any ill side effects from drugs.

    Doctors sure do make me angry too. You can do what you want, you never have to take the medicine that they prescribe. You have a right to do what you want, even though doctors will use intimidation to make you do what they want. It's sick!

  2. Here is my 2 cents.
    I don't believe your Dr is making you prove you are sick.
    I think that many Drs are so unfamiliar with Lewy Body that they aren't sure how to answer your questions about it's progress or your future beyond the textbook answers.

    Hubby too had to take the same tests and answer the same questions over and over to chart his progress and see what adaptations we need to make to make his life more convenient.
    Even minor things like, grab bars for the walls when mobility and unsteadiness needed an extra helping hand. Resources we might need not only for Hubby but for me as his caregiver.

    Questions about how hubby AND I felt about the meds he is on and if we think they are still helping or if we think they need re adjusting or even discontinued.

    I realized it was frustrating for Hubby to do but the information he and I conveyed was vital for the decisions that needed to be made for Hubby's care and comfort.

    Every person is different, every case is different.
    You, from what I read, are more actively involved in your care and health choices than Hubby wanted and wants to be. I applaud you for that :)

    So try not to take it as having to prove you are ill, consider it as a tool to measure your ability to remain as well as you are.
    The Drs are learning too. Teach them what good health choices, exercise, activity and involvement in your care, can do to better the quality of life for another suffering with Lewy Body Dementia.

    Keep the change ;-)

  3. two excellent comments. I've just recently read your blogs and have learned from them. I do respite care for people with dementia so I'm always looking for information that might help me with their day when I'm with them. Keep up your spirit.

  4. It might be worthwhile to share this with your doctor as well, maybe she does not realize that her questions, which may be required due to her insurance or hospital policy, are having this impact on you. And if you find out she is trying to give you grief, well then... maybe you can reciprocate!