Thursday, September 23, 2010

Saya Bisa Jalan: a goal


I was looking at my last set of travel photos. Here is a picture of me with my fashion consultant, a guard at the sultan's palace in the city of Yogyakarta on the island of Java. In the year that has passed, I have, only thought fleetingly of my desire to travel again. I have archipelago dreams again. I still want to climb a volcano. So much has changed in the past year.

I look at the picture above, and remember my exercise of the Indonesian language. Besides saying terima kasih (thank you), the phrase I remember using often was "saya bisa jalan" which means "I can walk." Walking was a challenge, enough so that I traded in my travel ready walker for a 140 dollar wheel chair from Century Health Care in Jakarta.

In Indonesia, I never had trouble getting help. But, I always wanted people to know my needs were slight. From a wheelchair, it was not unusual to find someone practically willing to carry me. That is when the importance of "saya bisa jalan" became clear to me. I could walk, and already was getting concerned when people viewed my difficulties as worse than they are. `

I started my vacation being misdiagnosed by a Redding neurologist as having Multiple Sclerosis. I sat with this news from the of my diagnosis in June until my first consult with a neurologist here in Santa Clara County. After my hour long consult, my doctors agreed my case did noit appear to be MS at all. Contrary to any rumors I may have started, he did not say my old doctor was on crack.

This has been my journey. Perhaps I have shared too much. But since my last MRI made spinal decompression surgery possible, I have had dreams, and setbacks. as well as much frustration. Within months of returning to San Jose, I eventually stopped walking. I wonder if that was wise. Still, I have followed direction of my therapists, and believe I will walk again.

My new mantra is "saya bisa jalan", and rising out of each breath is the rise in my determination. In the standing frame, I constantly monitor my breathing and my posture. Each breath I bring in slow, through my abdomen. In the beginning, keeping straight placed a strain on my back. Each day, I feel my back straight with less conscious effort. Each breath solidifies my resolve, and I even smile. This is why this frame is so special. It makes this posture accessible, and I can even disappear into it, as each visit builds upon the gifts of the last one.

Exercise, and muscle development is slow, but since I have started using the standing frame, my body is becoming more limber, and stronger than it has been in months. I have been able to cut my use of muscle relaxant, which leaves me feeling more vibrant. Every day, I find my legs, my back, and my belly stronger than before. I still intend to start walking again. I plan to travel, and I will climb a volcano. My experiences now suggest this is all feasible. I missed visiting Mount Merapi before. I will not miss out again.

Besides, if I want my own pleated batik sarong, it would be cheaper to have it made in Indonesia.

Thank you for reading.

Friday, September 10, 2010

Standing Tall (almost)



My development in physical therapy should advance quickly with th acquisition of my standing frame. Everyday, sometimes twice a day, caregivers at my house strap me into this contraption, and they let me stand. Amazing it is to have one of these of my own, I am able to experience the benefits of weight bearing exercise in a whole new way.

In physical therapy, therapists had introduced me to weight-bearing, and how it can help me therapeutically. They showed me how, with a rattled nervous system, muscles in my body were working against each other. For example, I walked with a walker, and my foot twisted in so violently, I was risking permanent damage to my ankle and knee by insisting on walking. By taking Baclofen, a muscle relaxant, I was able to almost control this level of spasticity.

Still, I was not walking. Muscles have a strange trait; they want to be used. I believe this spasticity, aside from being a response to spinal injury, is aggravated by lack of use. The spasticity is a revolt of the body against itself. But, it can look funny to see me riding around city streets, in my wheelchair with my legs fully extended for no reason.

So, this is why having this tool in my own home is such a special gift. This is not an exercise where you have to wait to see the benefits. Standing proper, just one time about ten minutes yielded a relaxation in my legs that felt wonderful. The feeling is enough to keep doing the exercise. But, there are effects which are cumulative. This exercise will help to properly develop the muscles in my leg, will encourage greater bone density in my legs, and will help improve trunk strength i my back and abdomen.

I think this is a success.

Thank you for reading.-