Jan 30th PT Session

My physical and occupational therapy sessions are 45 minutes each, have been, and are scheduled for every Wednesday into the future. I didn't have occupational therapy today because my therapist is out sick. I did have a good session with my physical therapist, Paul, a young ex-marine who really knows his stuff. I started by working out for 15 min. on the NuStep. Then we did some standing balance work. While I stood without any assistance, Paul swayed my hips side to side, front to back, and rotated them. He had me resist his motions while keeping my balance. The toughest part was keeping my balance through the front to back motions. My breath caught in my throat a couple of times as the fear of falling swept over me. It's a fear I constantly face, losing balance, and Paul simply said, "I won't let you fall." He has repeated those words to me during our past sessions, and I expect to hear them again as he continues to push me beyond my comfort zone.

We ended our session on the TotalGym. I did squats at different inclines, and Paul challenged me by having me do single leg squats. Whew! I was worn out when we were done. He reminded me to keep stretching, and showed me how to do a standing calf stretch. He also emphasized the importance of using control when sitting down and not just flopping onto my couch or bed. Ooops! Must work on not flopping :)

A Lighthouse for my brain fog?

I live in a sort of brain fog. This is the most difficult aspect of the disability that I deal with. I can, and do, work on my physical body through stretching, strength training, cardio, and physical therapy with tangible results. I can feel my body getting stronger and more flexible as the days pass.

The brain fog, however, does not lift. It's worse on days I am feeling weak and tired but never better. I have been told that it can get better but may take "many moons"- to quote the last neurologist I saw. The silver lining is that my cognitive skills and memory are intact.

I have seen several neurologists for my minor brain damage. When asked to describe my symptoms, I said "It's like being totally, sh*t-faced drunk all the time, without any of the fun." I slur my speech, have no sense of balance, my hands tremor, and my vision is all shaky. Each doctor nodded in understanding, since alcohol adversely affects the brain resulting in similar symptoms. Ironically, I had stopped drinking alcohol 6 years ago, but I still remember it's effects.

Lucky for me, I have someone who loves me and will not give up on my getting better. Jack continuously researches the topic of cerebellum damage and possible treatments. One treatment I partake in is mild Hyperbaric Oxygen Therapy (mHBOT). I have been taking 1-2 dives a day in the chamber while breathing in pure oxygen for the past few months. While I haven't noticed any changes in my neuro condition, it sure gives my vitality a boost. I have many days when I feel whipped and have no energy. A chamber session, which lasts 45-60 min, improves my stamina markedly.

Ultimately, I have to practice patience and give my body time to heal. My days are often filled with frustration, but I have learned to take a deep breath (or two), shed a few tears, and then regain my determination to make progress.

Hey beautiful lady!

I had a wonderful thing happen to me recently while shopping at our neighborhood HEB (grocery store.) We had gotten what we needed and were in the check out line. I was on my scooter with Jack ahead of me while he talked to the cashier as she processed our groceries. From the line next to us I hear "What is a beautiful girl like you doing on that thing?" I looked up, smiled at the guy, shrugged my shoulders, and replied "Such are the tragedies of life." He gave me a big grin and said, "Well, you are beautiful!! Have a happy new year!"

When we got to our car, I teared up a bit. Since this ordeal began, the last thing I have felt is beautiful. In fact, I had begun to come to terms with the folly of my previous vanity and placing so much importance on my outward appearance. With a broken down body, I have had no choice but to turn to my inner depths and beautify who I am on the inside.

It was, therefore, really touching that a stranger reached out and bestowed such a compliment on me. Thank you, guy:)

Busta Move!

After my release from the hospital last May, I could barely move my body from the prone position. The next few months, I spent most of the day in bed, needing a daily afternoon nap in addition to the 10-11 hrs I slept at night. I was so weak, I couldn't even wiggle around in bed, and I could only sit up on the side of the bed with assistance. My knees were locked from immobility, and I could barely bend them. The home-health physical and occupational therapists, two wonderful women whom I adore, worked hard to get me moving. It was tough and exhausting work everyday, but slowly my strength and stamina began to grow, and my mobility increased. I worked on sitting up longer, began bending my knees, then learned to stand, and finally began walking with the aid of a walker. 

At first, I walked like a stick figure. I didn't bend my knees or swivel my hips, natural motions we learned as children to incorporate into our walking. I also hunched over like an old lady because I couldn't hold my center of balance. My left leg had nerve damage due to a needle-induced blood clot my first week in the hospital. This resulted in a weaker left leg that constantly had the sensation of pins and needles (especially the foot) and didn't respond to my directions well. Retraining my body to move with proper form and posture took great effort and mental focus.  

Today (nine months later), I am able to move around my home fairly easily with a walker. My form and posture are much improved. I still have great difficulty with the left leg, but it is better than it was. I am not yet able to walk distances, so for treks out to the store and such, I use a Go-Go Electric Scooter.It is great for getting around, and while I long for the day I can walk freely, I am having fun on it.

The new year begins!

Hello and welcome!

I'm going to begin with an overview of my current condition. The first video of My Road To Recovery is available here on the right. Viewing this should give you a good idea of where I am. I want to take this opportunity to thank Lucia Duncan, the documentary filmmaker from the University of TX Film School, for her time, talent, and energy. She shares our vision of making a series of videos, over time, that will hopefully show my improvement and document how the various therapies play a part in my healing. We aspire to help others who also have currently-diagnosed, "permanent" neurological damage.

For a summary of how I got here, visit my Medical History. Also available are my 2007 Health Status Reports, sent out by my darling Jack. 

Last November, Jack sent out my final health status report for 2007. He shared how I was improving physically, graduating from home therapy to outpatient therapy, and the great challenge I faced with ataxia. During my stay in the hospital last year, I had stopped breathing several times, which temporarily deprived my brain of oxygen. This combined with the malnutrition most likely caused damage to my cerebellum. Unfortunately, there is no treatment, other than physical therapy and the passage of time, offered by the medical establishment. While the physical therapy has been tremendously beneficial, my neurological symptoms have not improved. I suffer from impaired speech, hand tremors, loss of balance, vertigo, and eye tremors which cause shaky and double vision.

My weight has steadily increased since the adhesions constricting my intestines, caused by scar tissue from an appendectomy at age 10, were removed last July. I was 74 lbs. in the summer, and today I am 105 lbs. In the past couple of months, I have gained more fat than I need, and I still have a good amount of muscle mass to gain. But no worries :) As I become more active, I know the weight will come on and redistribute as it should.

Last December, Apple terminated my employment after a year of medical leave. It was sad, but I am disabled and in no condition to work. I am still highly dependent on Jack for my day-to-day living. This makes him my primary caregiver, so he is unable to work. More than being a sad event, losing my job put me on the frontline of the crisis facing Americans today: affordable healthcare. Apple has an excellent health benefits package, and I was protected as an employee. Once my employment ended, the harsh reality set in. I have to now make a monthly premium of $450 out of my meager disability check for health insurance. On top of that, I have to make co-payments on every therapy session I attend and sorely need. I learned that I am not eligible for Medicare until I have been determined to be disabled for TWO YEARS!! WTF?!! So I find myself in a tough place.

Well, that is all for now. In upcoming posts, I will describe how I spend my days and how I am working to heal myself with standard and alternative therapies. Stay tuned:)