Helping a patient buck the odds

I’m not going to get rich off Mike.

Of course, I’m not going to get rich off anyone, nor do I want to. I’m not here to rip anyone off.

Mike goes back with me, roughly 23 years.

He was born with cerebral palsy and refractory seizures. His birth mother gave him up quickly, and he was adopted by a couple who knew what they were getting into (to me that constitutes sainthood).

Over the years Mike has done his best to buck the odds. He’s tried to stay employed, in spite of his physical limitations, working variously as a janitor, grocery courtesy clerk, and store greeter. He tells me that he can still work and wants to, even with having to rely on public transportation.

By the time he came to me he’d been through several neurologists and even more failed epilepsy drugs. His brain MRI and EEGs showed multifocal seizures from numerous inoperable cortical heterotopias.

I dabbled with a few newer drugs at the time for him, without success. Finally, I reached for the neurological equivalent of unstable dynamite – Felbatol (felbamate).

As it often does, it worked. One of my attendings in training (you, Bob) told me it was the home-run drug. When nothing else worked, it might – but you had to handle it carefully.

Fortunately, after 23 years, that hasn’t happened. Mike’s labs have looked good. His seizures have dropped from several a week to a few per year.

Ten years ago Mike had to change insurance to one I don’t take, and had me forward his records to another neurologist. That office told him they don’t handle Felbatol. As did another. And another.

Mike, understandably, doesn’t want to change meds. This is the only drug that’s given him a decent quality of life, and let him have a job. That’s pretty important to him.

So, I see him for free now, once or twice a year. Sometimes he offers me a token payment of $5-$10, but I turn it down. He needs it more than I do, for bus fair to my office if nothing else.

I’m sure some would be critical of me, saying that I should be more open to new drugs and treatments. I am, believe me. But Mike can’t afford many of them, or the loss of work they’d entail if his seizures worsen. He doesn’t want to take that chance, and I don’t blame him.

Of course, none of us can see everyone for free. In fact, he’s the only one I do. I’m not greedy, but I also have to pay my rent, staff, and mortgage.

But taking money from Mike, who’s come up on the short end of the stick in so many ways, doesn’t seem right. I can’t do it, and really don’t want to.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

I’m not going to get rich off Mike.

Of course, I’m not going to get rich off anyone, nor do I want to. I’m not here to rip anyone off.

Mike goes back with me, roughly 23 years.

He was born with cerebral palsy and refractory seizures. His birth mother gave him up quickly, and he was adopted by a couple who knew what they were getting into (to me that constitutes sainthood).

Over the years Mike has done his best to buck the odds. He’s tried to stay employed, in spite of his physical limitations, working variously as a janitor, grocery courtesy clerk, and store greeter. He tells me that he can still work and wants to, even with having to rely on public transportation.

By the time he came to me he’d been through several neurologists and even more failed epilepsy drugs. His brain MRI and EEGs showed multifocal seizures from numerous inoperable cortical heterotopias.

I dabbled with a few newer drugs at the time for him, without success. Finally, I reached for the neurological equivalent of unstable dynamite – Felbatol (felbamate).

As it often does, it worked. One of my attendings in training (you, Bob) told me it was the home-run drug. When nothing else worked, it might – but you had to handle it carefully.

Fortunately, after 23 years, that hasn’t happened. Mike’s labs have looked good. His seizures have dropped from several a week to a few per year.

Ten years ago Mike had to change insurance to one I don’t take, and had me forward his records to another neurologist. That office told him they don’t handle Felbatol. As did another. And another.

Mike, understandably, doesn’t want to change meds. This is the only drug that’s given him a decent quality of life, and let him have a job. That’s pretty important to him.

So, I see him for free now, once or twice a year. Sometimes he offers me a token payment of $5-$10, but I turn it down. He needs it more than I do, for bus fair to my office if nothing else.

I’m sure some would be critical of me, saying that I should be more open to new drugs and treatments. I am, believe me. But Mike can’t afford many of them, or the loss of work they’d entail if his seizures worsen. He doesn’t want to take that chance, and I don’t blame him.

Of course, none of us can see everyone for free. In fact, he’s the only one I do. I’m not greedy, but I also have to pay my rent, staff, and mortgage.

But taking money from Mike, who’s come up on the short end of the stick in so many ways, doesn’t seem right. I can’t do it, and really don’t want to.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.

I’m not going to get rich off Mike.

Of course, I’m not going to get rich off anyone, nor do I want to. I’m not here to rip anyone off.

Mike goes back with me, roughly 23 years.

He was born with cerebral palsy and refractory seizures. His birth mother gave him up quickly, and he was adopted by a couple who knew what they were getting into (to me that constitutes sainthood).

Over the years Mike has done his best to buck the odds. He’s tried to stay employed, in spite of his physical limitations, working variously as a janitor, grocery courtesy clerk, and store greeter. He tells me that he can still work and wants to, even with having to rely on public transportation.

By the time he came to me he’d been through several neurologists and even more failed epilepsy drugs. His brain MRI and EEGs showed multifocal seizures from numerous inoperable cortical heterotopias.

I dabbled with a few newer drugs at the time for him, without success. Finally, I reached for the neurological equivalent of unstable dynamite – Felbatol (felbamate).

As it often does, it worked. One of my attendings in training (you, Bob) told me it was the home-run drug. When nothing else worked, it might – but you had to handle it carefully.

Fortunately, after 23 years, that hasn’t happened. Mike’s labs have looked good. His seizures have dropped from several a week to a few per year.

Ten years ago Mike had to change insurance to one I don’t take, and had me forward his records to another neurologist. That office told him they don’t handle Felbatol. As did another. And another.

Mike, understandably, doesn’t want to change meds. This is the only drug that’s given him a decent quality of life, and let him have a job. That’s pretty important to him.

So, I see him for free now, once or twice a year. Sometimes he offers me a token payment of $5-$10, but I turn it down. He needs it more than I do, for bus fair to my office if nothing else.

I’m sure some would be critical of me, saying that I should be more open to new drugs and treatments. I am, believe me. But Mike can’t afford many of them, or the loss of work they’d entail if his seizures worsen. He doesn’t want to take that chance, and I don’t blame him.

Of course, none of us can see everyone for free. In fact, he’s the only one I do. I’m not greedy, but I also have to pay my rent, staff, and mortgage.

But taking money from Mike, who’s come up on the short end of the stick in so many ways, doesn’t seem right. I can’t do it, and really don’t want to.

Dr. Block has a solo neurology practice in Scottsdale, Ariz.