Jim’s MSA Blog

A few ups and downs

July 27th, 2007

The second day after Jim’s first stem cell treatment was a little rough, like the “morning after” consequences of a good party. He was very tired, weak and the tremor had returned first to his foot, and then to his leg by the end of the day. It’s not nearly as pronounced as before, but it’s back. The good news is that “James”, Jim’s physical therapist, has him stretching, moving, walking on parallel bars and even trying a few stairs each day. We can see improvement in Jim’s posture and movement each day.

The team of doctors brought Jim’s MRI during their rounds this morning and read it for us. There is significant cerebellar atrophy and some brainstem atrophy as well. Now we knew this, but it’s still a little sobering to see it in black and white. After the troops left I went over and sat on Jim’s bed. “Well,” he said, “I guess it’s official…I need a brain transplant! “Where can we find an ‘Abbey Normal’ brain?” (ha ha-quoting Young Frankenstein which we just happened to bring with us to China). We may have to watch it tonight. Jim’s strong spirit and sense of humor continues to amaze me.

The doctors have told us not to be discouraged. The new stem cells continue to grow for up to three months after they’re implanted, and Jim has had only one of four treatments. After the stem cells are administered they start an IV of nerve growth factor. This helps the new little stems target neurological damage to repair. if Jim had heart disease they would use blood vessel growth factor. This science is truly the new medical frontier.

There are many children on the 20th floor with Cerebral Palsy, some highly functioning and others severely disabled. Most are from Hungary and Romania. It’s inspiring to watch the devotion and love of the parents as well as the kid’s courage with it comes to the sometimes painful physical therapy and scary acpuncture. The physical therapists work with the kids for hours a day, patiently tring to pattern normal muscle control and recognition into their tiny bodies. Some of it is painful, and they often cry. They are usually intrigued with Jim in the wheelchair…an adult in the same circumstance as they are.

Yesterday there was a young girl from Romania who was terrified of the physical therapy room and equipment. She clung to her mother sobbing until the nurses asked the mother to leave the room. After a lot of coaxing and hugging, the nurses convinced the still crying child to start her physical therapy moves. When she completed her first move I started to clap for her and she looked up and stopped crying. She smiled at me and pointed, and the nurse asked if I would stand by her side. The little girl reached up her arms and gave me a kiss. It was so sweet…

Then she continued her therapy, looking around to me for claps and encouragement. I was feeling very Mother Teresa-ish when her mom walked back into the room and told me in broken English that her daughter was drawn to me because I looked so much like her grandmother! Grandmother? Wait a minute, I thought….didn’t you mean beloved auntie? There must be some mistake………… Grandmother?? I must have looked a little confused.

“Your hair”, she motioned, “is same color and style…”

I’m still a little shocked by it. Kind of like the first time you realize that you’re really 30. Or 40 or 50. But Grandmother?????

Bren…dig out those boxes of Lady Clariol that you’ve been trying to get me to use…I’m ready!

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