Today's blog applies to preparing for doctor visit regardless of the type dementia one might be living with. My diagnosis of Lewy body dementia (LBD) occurred 5 years ago. LBD affects six parts of the brain. These parts of the brain affect information processing, perception, thought, language, emotions, behavior, memory, movement, sleep regulation, maintaining alertness, and smell (olfactory pathways).
Symptoms of the disease may include: visual hallucinations, audio hallucinations, fluctuations in cognitive ability, decreased attention, decreased alertness, slowness of movement, difficulty walking, rigidity, sensitivity to medications, REM sleep behavior disorder in which people physically act out their dream, more trouble with complex mental activities such as multitasking, problem solving, and analytical thinking than with memory.
With all of the parts of the brain affected and the diffuse symptoms that can be present, it is no wonder that LBD is a very complex disease. Often times it is referred to as a disease of many faces and/or a roller coaster ride. The way the day starts for the person with LBD may change many times throughout the day. A few years ago I did a blog on six brains in one day. Very few doctors understand the complexity of this disease.
Because of the complexity, it is important to have a doctor who understands the scope of this disease. Doctors have limited time scheduled for appointments; therefore, it becomes incumbent upon the patient and family to prepare for the doctor visit.
My process in preparing for the visit starts by having an up to date record of every doctor that I see (name, specialty location, phone number), drug sensitivities, medication list (including name, strength, directions), adverse drug reactions, allergies, surgical procedures and immunizations. I choose to use a word document. This document is updated every time I see a physician.
Between office visits, I make notes of changes in my disease. I do this simply as reference point. As time approaches for my office visit, I will review my list of symptoms and remove any that might have improved/resolved.
The Lewy Body Dementia Associaton has incredible resources for families affected by dementia. I choose to keep links that will directly send me to the website page that contains the information needed at time. Visiting Lewy Body Dementia Diagnostic Symptoms Check List.
Select the top three to talk about at the appointment. Give the list the Nurse or Medical Assistant and she will give to the doctor. This should insure that you will receive answers to the most important symptoms. Now you are ready to focus on listening to the doctor address these most significant symptoms with less fear, stress and agitation. Take notes or have your loved one take them. This entire process provides for a more peaceful, productive office office visit and better outcomes.
Let's help each other through this journey. United we stand, divided we fall.
Wishing you a warm and happy day!
#LBD #Dementia #LivingBeyondDiagnosis #Symptoms #Peaceful #Productive #BetterOutcomes
© March 3, 2017 - Robert Bowles
Robert Bowles, Jr.