We thought an update on Abby’s progress was in order.
The path ahead often looks ambiguous with brain injury. Because the brain is the control center for the whole body, the damage isn’t always immediately apparent. Sometimes the autonomic nervous system, the parasympathetic and sympathetic systems, can become dysregulated. Higher brain functions like memory, reasoning, talking, and personality associated primarily with the cerebrum might be more obvious, but can also be incredibly subtle.
In Abby’s case, some of the most glaring issues she has had are associated with her brain stem’s regulation of her autonomic nervous system--she has been seen by many neurologists and subspecialists with a particular interest in dysautonomia. The neurological stress of the brain herniation caused a process that ultimately damaged her small nerve fibers and resulted in autonomic neuropathy. The usual treatment protocol for this is IV-Ig. She has had a persistent tremor in her right hand for years as well as paresthesia on her left side, head to toe. But those who know Abby well will be the first to tell you that her incredible mind has been hampered by what was going on with her brain. Her ability to read, process and retain information has been compromised; composing emails or handwriting text or reading anything longer than a page disappeared.
While her symptoms have improved since her surgery, she still has to do the work of retraining her brain and body to find a “new normal.” The long term goal is still to resume her education. To do that, she will need to be able to read, write, and comprehend lectures. Such sustained, focused attention has been virtually impossible.
The three parts of neurorehabilitation that Abby’s team wants her to focus on are:
1. Physical therapy--to strengthen her neck muscles after surgery; to strengthen her abdominal core and legs so she can have more “sitting up” and hopefully standing up time;
2. Occupational therapy--to strengthen her hands and teach her work arounds for using writing implements, utensils and how to perform other fine motor tasks;
3. Speech/Language therapy--to work on memory and language comprehension.
When Abby had her first speech therapy appointment last week, she explained that she had lost a lot of ability to visualize pictures in her mind while she was reading. Having been Abby’s full time caregiver for 7 years, I was definitely surprised I hadn’t realized this. Abby’s SLP explained that this didn’t surprise her because of where Abby’s brain injury was located--the back of her head, where that kind of visual association with language would be created.
Unfortunately, this isn’t an “exciting” process to capture for the blog. Recovery is slow and grueling. A lot of it is tedious, repetitive tasks, like strengthening her hand muscles using putty, and practicing her grasp with small pieces of cloth. PT involves a lot of subtle isometric type exercises. Her physical therapist also spends a lot of time loosening up her suboccipital muscles and working out the knots in the muscles the surgeon cut to gain access to her neck and skull.
But for patients like Abby, neurorehabilitation is everything. Small tasks, small movements that healthy people take for granted become more challenging to a brain injury patient. Patients often need to re-learn how to talk, walk, swallow, chew, feed themselves.
This is why Headstrong promotes the work of the charity SameYou. They are working to make neurorehabilitation available to all brain injury patients. COVID has made access to rehabilitation services more sporadic and challenging. The need doesn’t stop, even during an international health crisis. Check them out and support their work. Someone you know will end up needing these resources if they don’t already access them. Make sure that brain injury recovery continues to be available for those who need it--like Abby.