A major life event happened to me in June of 2011 when a car hit my bicycle. Initially, I was not aware of the extent of the damage; however since the accident, I have continued declining. As I "recover" from old symptoms, new symptoms continue to take their place. In spite of the advice from medical professionals, I continue to hope for a full recovery.
Orff, H.J., Ayalon, L., Drummond, S.P.A. (2009). Traumatic brain injury and sleep disturbance: A review of current research. Journal of Head Trauma Rehabilitation. 24(3). pp 155-165. Retrieved from http://www.nursingcenter.com/pdf.asp?AID=863002
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An
article that links narcolepsy with brain injury
Baumann, C.R., Bassetti, C.L., Valko, P.O., Haybaeck, J., Keller, M., Clark, E., Stocker, R., Tolnay, M., Scammell, T.E. (2009). Loss of hypocretin (orexin) neurons with traumatic brain injury. Annals of Neurology. 66(4). pp 555-559. DOI: 10.1002/ana.21836. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770195/pdf/nihms151446.pdf
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Abstract:Chronic, daytime sleepiness is a major, disabling symptom for many patients with traumatic brain injury (TBI), but thus far, its etiology is not well understood. Extensive loss of the hypothalamic neurons that produce the wake-promoting neuropeptide hypocretin (orexin) causes the severe sleepiness of narcolepsy, and partial loss of these cells may contribute to the sleepiness of Parkinson’s disease and other disorders. We have found that the number of hypocretin neurons is significantly reduced in patients with severe TBI. This observation highlights the often overlooked hypothalamic injury in TBI and provides new insights into the causes of chronic sleepiness in patients with TBI.
This conversation was posted on Facebook Friday (today). I'm sharing this personal post because it illustrates the daily struggle of living with a brain injury.
I have an appointment with a sleep specialist this afternoon who will be reviewing my recent sleep studies. Pray that his prescribed treatment makes a difference toward staying awake and focused, and provides relief for the lost short-term memory that prevents me from doing profitable work.
In Inception, the spinning top was a symbol
alerting the dreamer that he was asleep.
Sunday morning I felt I had achieved some sort of breakthrough. I had a sense of awareness and control that I have not had since before my accident. I was able to mentally plan and act without maintaining a list. I fixed breakfast, cleaned the dishes after breakfast, got myself ready for church, got Audra up, and went to church.
I lost that sense of control sometime during church. I briefly fell asleep during announcements at the end of the service, but I was able to wake myself enough to plan a Sunday meal, and run to the store for a couple of supplies. I started fixing the meal, but sometime during that period, I lost my focus. Consequently, the meal was not ready until mid-afternoon. I ended up taking a short nap after the meal was prepared. I did not regain that sense of awareness. The rest of the day, like today (Monday) I was constantly tired, and feeling as if I was living out a dream. In this mental state, which has become my new "norm," I feel my actions are mostly controlled by habits, and not by conscious thought, as my conscious thought is constantly battling against sleep for focus and control, leaving little mental power to actually use that control.
This morning, (Monday morning) I awoke with
that same sense that something old and familiar
was "awake" that has been asleep most of the
time, but that sense of wakefulness was spent on the mundane chores of a Monday morning, getting myself up, getting breakfast for the family, and helping others on their way to work and school.
Now, as I type, I'm back to feeling as if I'm
struggling to push through my dream-state existence to get a few things done. I have made
a list of things to do, and now I must begin accomplishing them, one at a time. I wish simple focusing did not demand so much effort.
This one-hour documentary explains many of the symptoms I struggle with, describing how different areas of the brain affect capabilities and behaviors. It also describes the process of healing, and why recovery can happen quickly, or can take years. Every brain injury is different.
I recently went through eye surgery (both eyes) once to have retinas reattached, and then just last month to have the lenses in my eyes replaced. I now have better vision than I have ever had in my life, and initially I was almost overcome to experience really excellent vision for the first time....
"Happiness is a Choice" ("raeart", 2010) Used by permission
But it took only a couple of weeks for me to start noticing areas of imperfection with my new perfect vision, and I actually caught myself grumbling about signs I couldn't read that were so far away I would not have seen the signs at all a few weeks ago!
The bottom line, it seems to me, is that all of life's joys and set-backs are relative. It is the attitudes we choose that determine our quality of life, not the particulars of our joys or sorrows.
My personal recovery plan is finally beginning to take shape. At a glance, it appears the majority of my difficulties are caused by how my accident exacerbated an existing problem of sleep apnea. My neurologist currently feels that correcting the sleep problem will be necessary before the remaining problems can be properly evaluated.
While I agree that the sleep apnea must be my central target, I am still focusing on individual symptoms also. My continuing problem with vertigo was definitely caused by the head injury, and correcting sleep apnea is unlikely to help that problem, but continued eye exercises can maintain my ability to accommodate the loss of inner-ear fluid by depending on vision for balance. A particular problem I have found is how complex traffic (or tracking any complex set of vectors) causes a sense of confusion if I happen to look up and to my left, which is common when driving in heavy traffic. That momentary confusion could be dangerous under the wrong circumstances, so I practice scanning a checkerboard grid to train my eyes and brain to work together, even when what I see is complex.
I have started using the brain training exercises at Lumosity.com that have been demonstrated to help build short-term memory and focus, and to remediate problems with discalculia and problems finding words to express ideas.
On one hand, not all of the areas that are shaping up to become most important to my recovery will apply to everyone struggling with a brain injury, but I believe there is still enough that we have in common that I will be able to create a useful resource.
As always, I invite ideas of readers. What resources have you found helpful? How would you suggest that a "resources" website would best meet the needs of TBI victims and their families?
As I sit at my desk, I just figured out, by retracing my steps, that the receipt I had just scanned had not yet been saved, so I saved the receipt image and filed it. It's a procedure that takes less than 30 seconds per receipt, yet I have been working on three of them over an hour, and I'm not done yet.
I keep all of my receipts currently, not only as a means to document that I was shopping to cover for lack of memory, but also as a means of helping me understand where I spend money. I link my bank statement line items to these receipts so if I have questions about my spending later, I have these records. I may not follow this pattern indefinitely, but while I'm establishing new ways to accommodate memory deficiencies, I'm keeping lots of records that are probably unnecessary.
In this same hour, I have answered the door, watched part of a television program, then restarted it because it was over and I didn't remember watching it. My desk looks noticeably neater than it did when I sat down, and the trash container is full, but I don't remember cleaning my desk. Obviously I have been doing more than I realize. Just now, I was thinking about how much time gets lost by retracing my steps because I forget what I'm doing. On the bright side, I am very efficient when it comes to retracing my steps, but not so efficient that it makes up for the lost time.
I decided to write this note because it occurred to me I had never documented some strange symptoms that I should mention to my neurologist at my appointment tomorrow.
The other day, the day before new year's eve, I experienced what I believe was a muscle cramp in my right thigh. Ordinarily I would not be questioning whether I had a muscle cramp, but I have had off-and-on numbness in my right leg since the head injury 19 months ago. I had been watching an episode of "Castle" with Jonathan and Audra. When the show was over, both kids headed upstairs. I don't move quite so easily, and I have to be careful not to lean on furniture to get up, because I have broken one of our chairs by pushing the arm away from the rest of the chair while using it to brace me as I got our of the chair. So... I rocked the chair twice until my momentum carried me past my center of gravity so I could get up without a crutch. At that moment, I noticed my right leg was stiff, and was not moving where I "told it" to move. I could feel a tight strain against my knee as if it was under pressure. I placed my hand under my knee to lift the leg into position when I felt the tight knot of muscle cramp. As I squeezed my thigh with my hand, I realized that muscle area was completely numb, although I could feel tightness in my knee and everywhere around the muscle.
Potassium from bananas
and adequate hydration
help prevent muscle cramps.
Realizing I had a cramp, I gently straightened the leg to a more natural position, and I massaged the muscle, feeling it relax and soften as I marveled about how wonderful it was to not FEEL the cramp. Leg cramps usually hurt.
Since that day, my leg has had the usual muscle soreness of a leg recovering from a cramp. Today is the first day the pain has been better. I don't know whether my numbness is strictly a neurological problem, or if it is related to circulation. Having gained 40 lbs in the last two months hasn't helped.
Since I can trace my weight gain to when I started taking Abilify, I have decided to stop taking Abilify so I can get my weight back under control. I have been eating very limited amounts of food, and I still can't loose weight. I am certain I will loose a lot of weight quickly without the Abilify, because I lost a lot of weight quickly the last time I stopped taking it.
I have now skipped two doses. Aside from a generally grumpy negative attitude that has replaced a happier demeanor, I don't see much difference in how I feel. I'm probably having more difficulty focusing than usual, but my focusing wasn't especially great before I stopped taking the Abilify.
Based on my past experience stopping Abilify, I won't be too surprised if I experience some hallucinations before the medicine is completely out of my system. Time will tell. I do have a song stuck in my head though... (Now the song, "what a day for a daydream" is running through my head...)
The other thing I must do is exercise. It's time to stop using the bicycle ban as an excuse, and find something I can (and will) do to use my muscles. Either that, or I need to pursue getting knee replacements so I can walk for exercise. (but then, shouldn't I loose some weight before I decide I need surgery?...and around the loop goes again....)
