The Times West Virginian

November 3, 2013

Is it ‘crazy’ that therapeutic use of marijuana ‘can’t be a medical decision’?

By Mary Wade Burnside
Times West Virginian

RIVESVILLE — Kenneth Todd lost the ability to use his arms and legs 12 years ago after a diving accident left him a quadriplegic.

Before his accident, Ken said, he figured, as many people do, that the worst thing about being a quadriplegic would be the loss of independence — the inability not only to walk but to do simple, everyday tasks without the help of someone else.

He was wrong.

“I have learned that that is, if anything, the easy part. I can find ways to cope with that, to adapt.”

Instead, Ken, 43, of Rivesville, has found himself caught up in a cycle of spasms that cause pain and pain that causes spasms.

In addition to the discomfort this makes him feel, it can prompt his blood pressure to spike, as high as 280 over 180, a dangerous condition that requires immediate medical attention.

In order to control the pain and spasms, he has been given a host of narcotics, including Tramadol, morphine and Oxycontin. Because constant use makes him develop a tolerance to the drugs, the types of medication have to be changed and the dosages increased for Ken to

continually receive relief. Currently, he is on a 100 mcg Fentanyl Transdermal patch, which Todd’s wife, Colette, said “is 100 times more potent than morphine.” He also takes Percocet.

Additionally, he has tried surgical treatments to stop the spasms. Most recently, in late September, he has a Baclofen pump implanted in his abdomen with a tube that delivers the medication that treats spasms directly to his spine.

That procedure resulted in a five-day hospital stay, 15 staples in his abdomen and seven staples in his spine, Colette said.

“The post-surgery complications are a spinal headache, caused by spinal fluid leakage, which he describes as like having his head in a vice,” she added shortly after his surgery. “This means he has to lay prone until it hopefully resolves.”

However, Ken has tried a controversial treatment that he found nearly instantaneously stopped his spasms and therefore dulled his pain and kept his blood pressure from spiking: he smoked marijuana, which has been legalized for medical use in 20 states.

“Within minutes, his spasms ceased completely,” Colette said. “The triggers that normally fired them off were dulled and nonreactive. No other medication had brought about such a positive reaction. It was almost miraculous.”

Ken, however, cannot use marijuana on a regular basis without putting himself and Colette in legal danger.

So the couple is hoping the West Virginia Legislature does the same thing that nearly half the states in the country have done — allow for the use of marijuana in very specific medical situations.

To Colette Todd, the choice is clear as she watches her husband take Class 2 drugs such as Fentanyl and morphine with mixed results, and even undergoing invasive surgery.

“The irony in all of this,” she said, “is that he can get morphine and Oxycontin prescribed for him, which are highly addictive narcotics, but not marijuana, which is far less harmful and has better results.”

However, many people hear the word “marijuana” and immediately dismiss the idea of legalization.

Delegate Mike Manypenny of Grafton, whose District 49 includes most of Taylor County and smaller parts of Marion and Monongalia counties, used to be one of those people.

“Several years ago, I was asked by constituents to legalize marijuana,” he recalled. “I said, ‘Are you crazy?’ Because I couldn’t see any reason to do so.

“The next year, I was approached by the same people with more details of the reason why, for medical use for treatment of cancer patients. I said I’d look into it.”

Soon after that, he saw a documentary on television that he said chronicled how marijuana had been used as medicine from the 1800s until the 1940s.

“It caught my interest,” he said. “I had no idea there was this movement where there had been (at that time) 16 states that already passed legislation for marijuana to be used as medicine for chronically ill patients.

“And then it seemed like every time I turned around, Fortune magazine, Time magazine, Life magazine, Mother Jones magazine and some science journals featured articles on marijuana. The more I saw, the more it interested me to find out more about it.”

Manypenny began doing his own research, and in 2010, after studying the legislation passed by different states and taking what he considered to be the best parts from those laws, he came up with his own bill for the West Virginia Legislature.

“It was so controversial the first year I introduced it,” he said. “It’s one of the most uncomfortable things I’ve ever done. But when I approached my colleagues and said, ‘marijuana,’ their eyes looked to the ground and they shuffled their feet.

“The second year, everybody was joking and I got snide remarks,” he said. “I shrugged it off and said, ‘You are not informed.’ And I came back to them and tried to explain to them and said, ‘This is something that could help people. This is allowing a doctor to prescribe a plant that has medicinal properties to be used by people with chronic illness.”

Illnesses that Manypenny said have shown relief through the use of marijuana include cancer, because it can help chemotherapy patients keep food down and keep them from wasting away; Crohn’s disease; post-traumatic stress disorder; and neurological conditions such as multiple sclerosis, Parkinson’s and Alzheimer’s disease as well as illnessses that cause seizures and spasms.

Last spring, a forum was held at the Legislature to hear testimony about medical marijuana.

“There was no opposition,” said Manypenny, who noted that speakers included nurses and law enforcement representatives.

Part of the reason for that could be, he said, that in almost every state that has legalized medical marijuana, there has been a reduction in prescription drug abuse, which has reached high proportions in West Virginia.

“They think that as people use medical marijuana as a pain reliever, there are less people prescribed opiate medications, which are addictive,” Manypenny said. “They’ve found that medical marijuana helps to ween people off opiates. What we do is trade one for another. We give methadone for people on heroin. It’s just another substitute.”

After that forum, the Legislature’s Joint Committee on Finance and Government commissioned a study on the benefits and uses of medical marijuana. Now, Manypenny awaits the results of the study in December, to see if a bill will be drafted or if he will submit an updated version of his own bill.

However, he noted, “Most controversial issues don’t get voted on during election years.”

Also anxiously awaiting the results of the study are Ken and Colette Todd.

Ken, a native of Arizona, attended college in Arkansas and was back there visiting in 2001 when he had his diving accident, Colette said.

He was swimming in a designated area at a lake when he did a top dive. Some concrete from a pier had been left behind by a contractor, Colette added, and Ken dived into it.

He immediately could not move and was upside down in the water until friends helped him. He was flown to a hospital and learned that he had a complete break at his C6 cervical nerve, rendering him a quadriplegic, paralyzed at his nipple line. He was 30 years old.

Ken, now 43, eventually moved to West Virginia because his mother, now deceased, lived here.

Colette, a native of Liverpool, England, did not meet her future husband until after his accident. They became acquainted online and she decided to visit and essentially never returned home.

“I liked it here and I liked him a lot,” she said. “I kept putting off my return. I kept losing money on tickets.”

They were married in 2007.

“In hindsight, I could say I never fully comprehended the extent of what he would require,” she said. “It was a very steep learning curve. I didn’t see the wheelchair, if that sounds strange. I didn’t fully comprehend the extent of care he would require.”

She also did not fully understand how difficult it would be to watch someone she loves experience such pain. The spasms, she said, can start in his back, abdomen or leg muscles.

“They can literally arch his back up a bit like in ‘The Exorcist’ movie and then they can straighten him out,” she said. “He can literally torpedo out of his chair. It can make him straight as a board or it can bend his back. It’s quite a sight to see.”

He has emergency medication on hand in case his blood pressure spikes. If it does not work, Colette has to call 911. “I always keep a bag packed.”

The Baclofen pump, she noted, has required a lot of return visits to the hospital.

“The pump is a trial and error thing,” she said. “They don’t know the right amount of dosage to stop the spasms but allow his muscles to work.”

His vision has been impaired since going on the pump because of a loss of muscle control around his eyes, so he has to wear dark glasses until that situation gets resolved.

As for the marijuana, Ken heard that it could help control his pain and spasms and so he asked a friend to obtain some so he could see for himself. The couple was pleasantly surprised by how quickly the marijuana worked to cease his pain and spasms.

“It all happened in a few minutes,” she said. “If he was given a choice of marijuana or pain medication — narcotics — he would have gone for the medical marijuana. That’s how significant the difference was. But it’s not available here. It could put him at risk and it also would jeopardize me. He didn’t want to put me at risk.”

Instead, they look to the West Virginia Legislature to legalize marijuana for medicinal use.

To Colette, using marijuana instead of a drug such as morphine makes complete sense. But she also uses it as a comparison for how she would like to see marijuana regarded.

“Morphine is illegal for social use,” she said. “Nobody expects it to be available for social use. He wouldn’t have to have high-level narcotics that he develops a tolerance to at some point.”

She fears a time when her husband reaches a stage that narcotics will not work at all in keeping Ken’s pain and spasms at bay.

“It just seems crazy that this can’t be a medical decision.”

In the meantime, she begins to cry when she talks about the realities the couple faces, including the fact that in the morning upon wakening, she cannot reach over and even give her husband a loving touch for fear of bringing on pain or spasms.

“I can’t do things most women can do my age and take for granted,” she said. “It’s important to be able to lean over and touch someone as you say ‘good morning’ and things like that that you miss that you’ve never been able to do.”

Twenty states plus the District of Columbia have legalized medical marijuana. The states are Alaska, Arizona, California, Colorado, Connecticut, Delaware, Hawaii, Illinois, Maine, Massachusetts, Michigan, Montana, Nevada, New Hampshire, New Jersey, New Mexico, Oregon, Rhode Island, Vermont and Washington.

If the Todds moved to one of those states or to the nation’s capital, Ken legally would be able to use marijuana to combat his pain and spasms.

Currently, however, finances keep them from doing that, as does another reason.

“We regard this as our home,” Colette said. “All our friends live here, and that network of support is so important to us. We love it here. The people in Rivesville have made us ‘family’ and we don’t want to leave.”

Email Mary Wade Burnside at mwburnside@timeswv.com.