The spouse of one of my friends with LBD sent me a text this morning because she needed to take her husband to the ER out of state. I quickly sent her links to the LBDA website so that she would have the information to share with the hospital staff. I was able to provide six different links for various situations. She just sent me another text and told me they were at the hospital and the nurse had never heard of LBD. The nurse told the spouse that the hospital groups ALL dementia under one category. The spouse relayed to me that "the lack of awareness of LBD among healthcare professionals is scary" and I would agree with that. The good part is that the nurse was receptive to the information that was provided to her and is asking the spouse before giving any medication to her husband.
Personally, I was given a medication one year prior to my diagnosis of dementia with Lewy bodies (DLB) that took me 15 months to recover from. I reached a point of sleeping 16 to 20 hours a day and was unable to do anything. Since my diagnosis, three years ago, I have been given 6 medications that I quickly recovered from, probably since I addressed the possibilities with the physician prior to taking the medication. In each of these situations, the physician agreed to reduce to the lowest dose and I still had an adverse reaction.
On another medication, the physician ordered the maximum dose of a medication over the phone without telling me the dose that he was going to give. When I picked up my prescription and saw this, I chose to cut the dose in half and still reacted. This reaction took almost 2 months to recover from.
When I had my cervical disc surgery, I was given medications during surgery that took me 2 and 1/2 months to recover from. Several months following surgery, I was given a low dose oral steroid dose pack. Not responding, the physician decided to give me a 12 day, large dose oral steroid pack. Again, this took 2 and 1/2 months to recover from. My neurologist has told me that he wants to write a paper on my medication sensitivities.
Statistics indicate that one-half of LBD families had an emergency last year.
How can you treat what you do not know. We must work harder creating more information/resources/knowledge so that proper care can be given.
Be LBD Strong!
©2015 Robert Bowles
Robert Bowles, Jr.