It’s difficult to write about a bad day for Jim, as I don’t want to cause worry to our friends and family so far away. So I want you to know that I’m writing this from the perspective of Sunday morning, and Jim is fine and back to normal.
Friday, however, was a different story. Jim woke up feeling weak and dizzy, with aches all over his body and tingling in his legs. We cancelled his therapies for the day and he took his Parkinson’s meds from the U.S. as well as the Chinese medicinal tea.
By mid-morning he was very anxious and needed some pain killers to try and relax. We had starting watching Chinese soap operas on the tv without the sound, making up our own dialogue, but today he wasn’t interested. Mid-afternoon, more pain meds. We spent most of the afternoon just quietly talking about our life together.
By evening his breathing was shallow and he felt that he wasn’t getting enough oxygen. He was put on oxygen and the doctors ordered an EKG to check his heart. It was a long night and throughout the doctors and nurses came in regularly to check on him. He was not running a fever, but was sweating profusely even though our room was cool. We directed a supplementary fan on him and and covered him with Jeanne’s silk sleep sack. The fan ruffled the silk against his legs and he was smiling in his sleep.
He awoke in the morning, drenched from a night sweat but asking for toast and eggs for breakfast. I knew he was back to normal!
In conferencing with the doctors we have decided to forego the Chinese Medicine for now, and be extremely careful with the pain meds. There may have been too many chemicals crashing into each other in Jim’s body in addition to the stem cells. This may have caused an anxiety attack.
By Saturday noon he was back to normal and I was breathing a huge sigh of relief!
August 5th, 2007
Jim had his third stem cell treatment (second spinal) on Wednesday, August the 1st. He had electro and physical therapy in the morning, but choose to cut short the acpuncture. The electric currents attached to the acpuncture needles are a little tough for him to handle and he wanted to be rested for the stem cell treatment in the afternoon.
The actual spinal treatments take no more than a half hour. When Jim was wheeled back into our room he was a bit groggy and surprisingly did not ask for his ipod. He wanted to be turned on his side (this is allowed as long as the head does not move upward at all). He was tired and wanted to sleep. A while later one of the nurses awakened him and asked how he was feeling. “HUNGRY!” was the reply. “No, no…are you feeling good?” she asked again. “I’m in a hospital…how good could I feel!” Smarty pants.
He went back to sleep, waking a few hours later and again, asking when he could eat. That’s our boy. At four hours the nurses said he could eat something, but could not raise his head for another two hours. It’s tricky eating while you’re lying down, especially for Jim who can choke easily. But I found that spooned applesauce and mango juice (thank you Meng) through a straw did the trick. He closed his eyes again and was smiling, talking, and at times even shouting out in his sleep.
Thursday morning Jim was feeling a little rough…the hangover thing again…and passed on the morning electric wave therapy.
Later in the morning James got him up on the parallel bars for physical therapy and added a little twist: tossing a large, soft ball to Jim as he stood between the rails. I was surprised at Jim’s coordination in being able to use both hands to catch the ball and throw it back, without losing his balance.
It’s a huge effort for Jim to walk, partly because the disease has caused a significant stoop in posture and a chin-to-chest position of his head. He and James work dilligently on the parallel bars everyday to improve this. There is a large mirror so patients can see their posture as they move. Anchored to the floor of the bars is a 6 inch tall plank of wood running straight down the middle. This visual guide encourages proper feet alignment. Then there are movable triangular stops, also about 6 inches high, placed between each step so that patients must lift their feet to clear them. James walks along side the bars, tapping Jim’s back to remind him to stand tall, repeating the mantra, “head up, head up!”
As I watch I’m struck by the irony. Jim has kept his chin up with such incredible courage and spirit throughout his battle with this devastating disease.
August 5th, 2007
