We moved to back to Austin 2 and 1/2 years ago.
After 2 1/2 years, I am still putting together my medical team after my persistent symptoms after mild traumatic brain injury/concussion.
The difficulties I have had has surprised me.
I have had to put a medical team together, and the deficits from the injury very much compromise my ability to put one together.
It took me over 10 years in Northern Virginia to put together my medical team.
From putting a medical team together and from my speaking and advocacy work, I know that many doctors are not aware that there can be persistent symptoms after brain injury.
I know alot of the pitfalls of seeking medical care after persistent symptoms.
I also know that my persistent symptoms may get in the way of carrying out the doctors recommendations, so I want to do what I can to make my doctors aware that my symptoms may affect my abilities to follow through on recommendations. I want to minimize follow through after doctors visits from falling through the cracks due to my deficits.
I can understand that doctors who are not directly involved in the brain injury field may not be trained about persistent symptoms and/or how they may affect my health care. I know that I may look fine to a new doctor and that may also create a problem to my receiving the health care I need.
I have had alot of media attention about my injury and recovery. So I always take a nice copy of The Washingtonian Magazine article about my recovery “I Want my Brain Back:… ” as part of the materials I take on my first visit as well as a chronology of my diagnoses and treatment so that I can hand doctors or health professionals a short summary on that.
I also prepared a talk on seeing doctors after brain injury for an educational series. Debi Gale, a speech and language therapist helped me develop the talk. The talk was sponsored by Brain Injury Services (BIS) of Northern Virginia to help people understand mild traumatic brain injury issues. I received case management services at BIS in the ninth year of my recovery from my injury. (Case management helped me tremendously with obtaining services I needed that I could not have gotten on my own).
So I always take written materials to my medical appointments so that things are written down and I don’t have to remember to say them.
I also try to write down as many questions as I have (which means remembering to do so beforehand and remembering the issues I need to talk with my new doctor about).
I know that I will be distracted in the office and the more I can focus my information and write down my questions before my appointment, the more likely I will get across any issues I need addressed and get the help I need.
I know its very easy — too easy — for me to get out of the doctors office and remember major issues that I did not bring up.
After 2 and 1/2 years here in Austin, I am still putting together my team.
Again, it took over 10 years in Northern Virginia when I had less awareness about my issues.
So I realized this week, that I need to be okay with it taking as long as it needs to take.
Sometimes I find a new doctor that is completely on top of it and I definitely want them to be on my team. These are often the specialists like the sleep doctor I saw last week.
Sometimes I find a new doctor who is good/great and who is open to either somewhat knowledgeable or open to my issues. I may need to further educate that professional about how to work with me and my deficits and this can take a while for us to figure out how to work together.
Sometimes I find I cannot work with a doctor or medical professional and that I need to start over again and look for another person in the same discipline whom I think I can work with.
I realized just I don’t have control over how much time the right team will take. It is what it is.
I have about 3/4s of my team so far and that is a good start.
