This week has been a little like last week.
I am still struggling with not being 100 % back to where I was before my dental appointment that caused my setback 9 weeks or so ago.
I am doing what I can to keep my mood up. Keeping my mood up helps me tolerate dealing with the symptoms of sleep issues and my head working more poorly than I have been used to. Keeping my mood up does not solve the problem, but it does keep me more level headed and the more level headed I am about my brain working more poorly, the more I can take what my brain is doing (or not doing) in stride. The more I can laugh at some of my foibles and the more I can help others understand that what they are seeing is indeed what I am experiencing. Or deal with it when they cannot see that anything is different for me because they either don’t know what to look for or don’t know me well enough.
My husband was telling me this week that he is having a tough time understanding me. I have come to appreciate that he can see the decline in my functioning quite acutely and to listen to him (rather than get defensive) for clues as to how he sees it. When I listen to how he sees it without being defensive, we can work with each other to help both of us. When I cannot listen to him about it, my poorer functioning can separate us. I can feel like he doesn’t understand how hard it is for me or how much I am doing to try to make it better. One his side, when we get separated around my brain injury related issues, he says that he feels that I am not appreciating how hard it is for him. Its funny because we have had to learn how to not let our adorable son separate us on issues. You would think that would help us, but it is much harder to not let my injury separate us.
My husband told me that it’s as if my sentences are thoughts in process rather than sentences. After I thought about what he told me carefully, I realized he was telling me his side of exactly what I feel. He was saying it in his words. What I realized from talking with his is that my slower processing right now is showing up in my conversation. I cannot process what’s happening around me fast enough. Which means that I cannot pull it together to communicate efficiently or effectively to others around me, even though I know I am not doing well and I want to be able to communicate that. Of course, this is a recipe for frustration above and beyond the frustration that I am already feeling because my brain isn’t working how I am used to it working.
It is useful to know his point of view. I am not sure I can do that much to help it, but its good to understand what he’s seeing.
It is useful to know from him that often my paragraphs are not started with a topic sentence but are just a collection of sentences in which I hope that I will learn the topic sentence by getting my thoughts out in front of others. This is occurring more often after the setback started. And it does help to know that my husband is experiencing it because it reminds me to try to remember to start with a topic sentence when possible when conversing with others. It also tells me that if people are not understanding me the first time I try to tell them something, that I should start with a topic sentence the second time I try to explain my thoughts to them to get get my point across.
Here are some of the things I did this week to move my setback recovery forward.
I made an appointment with my neurologist, Dr Hill. Since I have plateaued in terms of getting back to my 100%, I figure he may have some suggestions. Its been over a month since I have seen him last and I need to get his input on next steps.
I also made an appointment with Russ Adams, a mental health professional, who knows brain injury. I had gone to see Russ Adams over ten years ago when I originally did rehabilitation here in Austin. He already knows me because we worked together before. He worked at St Davids Rehabilitation Hospital when I saw him last and he is familiar with the difficulty that people with brain injury had in getting the resources they needed and the journey that they travel to get better.
I also got some useful information this week that was very helpful for lining up my next steps to try to get the resources I needed to try to get me better. Over the past couple of weeks, I had reached out to Dr Andrea Laborde and told her a little about what is going on in my life. Dr Laborde is currently working at a concussion clinic in Australia where they take concussion recovery for civilians very seriously. I was introduced to Dr Laborde by Ann Marie McLaughlin (and other folks) from ReMed, a forwarding-thinking Rehabilitation Company located in the Philadelphia area. Dr LaBorde and I did a talk on mild TBI issues in about 2005. More on this later. Dr Laborde and I also worked on the Ontaria Neurotrauma Foundation guidelines on persistent symptoms following Mild Traumatic Brain Injury www.onf.org. I have written about this work in previous posts. I wanted to get Dr Laborde’s perspective on my setback.
Dr Laborde said brain injuries cannot get worse, but it is well known that the symptoms can reemerge after an external event after they have been managed. Andrea told me that the medical term for the problem that I am having (which I have been calling a setback) is recrudescence. She told me that at her clinic they treat a recrudescence by treating the symptoms. In my case, that would mean treating the sleep issues, cognitive deficits, vestibular and/or vision issues. The truth is that I have begun to treat some of my symptoms by adopting some stricter strategies on cognitive rest with the computer and with my mental effort. From her email, I realized that being as comprehensive about adopting stricter strategies, with the help of professionals may behoove me. I will talk with my neurologist about this when I see him this week.
The other thing that happened somewhat serendipitously this week was that my former vision therapy doctor, Dr Amiel Franke, called me on Monday to ask a favor. He is retired and is 90, but he still is very interested in what is happening with his former patients and I had had lunch with him last year if DC. He asked me how I was doing, and I did not hesitate to tell him about my setback. His response was, “I know exactly what is wrong with you”. Now you might think that its hubris that he could diagnose me over the phone, and after telling me what he thought, he did advise me to reach out to my vision therapist here in Austin, Dr Denise Smith, to follow up. The thing about Dr Franke that I know is that he’s always right. At least he has always been right in the past, which means I know his batting average is 100% with me so far.
I made an appointment with Dr Smith and I will talk with Dr Hill, my neurologist, about the vision aspect also since he is a neurologist that believes that considering what is going on with the visual system is important in brain injury recovery.
On to next week…
Have you had a reemergence of symptoms after an external event?
How was it treated?