Recently, my cognitive neurologist told me that I needed an internist who could manage a multi-system disease such as dementia with Lewy bodies (DLB). Since my regular internist is battling cancer, I have been able to find another internist quickly and was able to see him Friday.
My new physician has treated several LBD patients and was well versed in LBD representing Lewy body disease. Further, he was aware that DLB represented dementia with Lewy bodies and PDD represented Parkinson's disease dementia which are the two types of dementia under the umbrella of LBD. I had spent three to four hours preparing for my office visit. Everything was organized starting with seven years prior to my diagnosis of LBD in June 2012. Three months after diagnosis, my neurologist started referring to my dementia as DLB. I had documented my fifteen month path to diagnosis. The list of medication sensitivities that I have experienced were numerous. I provided him printed information about medication from LBDA. He was amazed at the list of things that I am able to do almost three years after my diagnosis.
I reminded him that there was life after diagnosis and that the final chapter had not been written. He found my acrostic ASAP squared to be interesting. His comment was that is a good path to follow after diagnosis. He smiled when I told him about two of my many mantras. "I don't have time to die, I have too much to live for" and "Live life to the fullest, Live life like never before". Judy commented to him that I had collated the documents. His response was that he would have expected that I would have done that.
The appointment abruptly ended after forty-five minutes; not because he or I was ready for it to stop, but because the hospital had called him about two patients needing to go into ICU. The appointment went so well because I had prepared for the visit and he intently listened to the written word and my verbal communication. He literally soaked it in with minimum interruptions. If he needed a better understanding about something, he would ask me questions.
As he was walking out of the exam room, he told me that he would always be there for me. When Judy and I got into the car, she said "that is the most intently engaged physician that I have ever seen". She said I normally get anxious when I go with you to the doctor because you talk so much". Following up with that comment, she said "I was not anxious about anything because I saw him smiling and intently listening to what you were saying and reading the material that you had provided him.
It is such a blessing to have a physician that understands LBD and is able to take time to listen and be engaged in all that is taking place.
© Robert Bowles
Robert Bowles, Jr.