Over the past few months, I’ve been trying to support my dear friend Julie, as she cares for and mothers her child, who was recently diagnosed with transverse myelitis (TM).
For the weeks leading up to her child’s TM diagnosis, she divided her time between quality time with her baby and researching at the local public library.
Julie has become an information-seeking machine.
Between phone calls to texts to coffee chat dates, Julie has shared with me how her research helps her prepare to be the best advocate for her child. Her research helps her support/defend her child, arguing/pleading for his needs and rights.
Ultimately, she and her husband know their son better than anyone else.
But she doesn’t have any medical background/education.
Julie has decided how, when, and where her efforts will be focused.
And with every question she has about risks, recovery, therapies (her questions flow like a river), she has written down an answer and organized her notes.
In order for her to listen and comprehend any scenarios or advice from the nurses and doctors, it was imperative to learn—you name it, she read it.
If you or someone you love has been diagnosed with TM, then this article is a great jump start to your own research. Offering information on:
- Definition
- Description
- Demographics
- Causes and Symptoms
- Diagnosis
- Treatment Team
- Treatment
- Recovery and Rehabilitation
- Prognosis
- Resources
As a parent, my friend, Julie, plans on being her child’s best advocate—until he’s old enough and informed enough to speak up for himself.
She know her child’s health challenges, and she plans to identify and push for the treatment and services he needs.
When people take an active role in their health care and get involved in the process of their own health advocacy, there is a greater sense of control and increased confidence in decisions. Consider taking the lead from Julie—become the information-seeking machine.
