If I don’t get information fast enough, I tend to search on my own. I wasn’t content to make an appointment for Wally with the neurologist and then wait to see what he had to say when he saw us. I wanted to know what the lack of feeling in his legs meant. I sat down at my computer, typed in “legs insensitive to pain and loss of feelings in legs” and searched. That was three generations of computers ago so I don’t have the site saved for reference now. Because I am blogging, I decided to go through the same exercise and see what pops up for your reference. It may not be the same as I found then—information and knowledge have changed over the past eight years.
Sure enough! My search this time produced myriad possibilities. I could not focus on anything specific as I did in 2001, when one disease jumped off the page to my attention: Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS). I can still relive the dread and horror I felt.
In the morning I called the neurologist. His receptionist answered and to my surprise she did put me through to him. I told him what I had found on the Internet. “Don’t go there,” he said.
“I have to. I’m the caregiver. I have to know what we face.”
“I know you want to be prepared, but I suspect it’s the Bromocriptine. Wally is on the highest dosage I have ever prescribed for a patient. He hasn’t shown side effects and I wanted to keep him off the L-dopa for as long as I could.” The neurologist cleared his throat. “Bring him in. I’ll test him.”
After he examined Wally, he said, “We’ll ease back on the Bromocriptine and introduce low doses of L-dopa or Sinemet to replace the dopamine he’s not producing. Then we’ll work up the strength until we get a balance between the two.”
Because of the severity of Wally’s burn in his leg, he had to be very careful, but since he didn’t feel any pain, he was gung-ho to play pool with his buddies at the recreation center. For three months, visiting nurses dressed his wound. One warned me, “as the nerve ends in his leg begin to heal, he may be in excruciating pain.”
I was prepared but it never happened. So, the lack of feeling in his legs remained a mystery. It also meant we had to become more vigilant because if he banged himself or developed infection in his leg, he wouldn’t know.
In six months, Wally’s leg was completely healed. No scar tissue. No depression. Just a faint scar. Amazing.
My work increased. Wally spent most of his days playing pool and he still took the dog for walks. About this time, our physician wondered if it might be less of a hassle to seek a neurologist closer to where we lived. Our city neurologist’s receptionist—the sergeant major as I called her—was making it difficult for our family doctor to make appointments for us.
So, we switched over to a different neurologist. He was a milder version of House. I suspected he was burnt out from lack of sleep and too many patients because he was the only neurologist in the area. After he tested Wally, he explained Bromocriptine had been around since the 70s. He suggested we start Wally on a new agonist to go along with the L-dopa: Permax.
The neurologist started Wally on low doses and worked up to what he called his “tolerance” level. Over the winter, Wally’s quality of life improved. His days smoothed out between the peaks and valleys when the meds wore off and he experienced “freezing,” an inability to move his feet. A narrow or cluttered space could still set off “freezing” but for the most part, he felt regenerated. The combination of L-dopa and Permax seemed to work until July 1, 2004. Then we were back in Emergency.