Sean’s Story

Sean Giblin is uniquely qualified to give advice about coping with spasticity in his career as a support service coordinator and peer-counselor at MS Focus: the Multiple Sclerosis Foundation. He has a long history with spasticity. It has been an increasing presence in his life since shortly after his diagnosis with primary-progressive MS at the age of 16. “I was first dealing with foot drop. I moved from a brace to a device that stimulates the nerve, and then the spasticity started in that leg,” he said.

At first, the pain and spasms were light and of short duration. But with the progressive nature of his condition, that has changed. “Year after year, the spasticity got worse,” Sean said.

He explained, “My physical therapist told me that the spasms are caused by damaged nerves in my spine.” Since primary-progressive MS continues to cause nerve damage over time, what began in one spot now affects much of his body. Eleven years after his MS diagnosis, Sean experiences spasticity in his legs, feet, arms, hands, and back. It is particularly bad when he transfers from his power wheelchair into bed at night. “My back will arch and my legs spasm – this really hurts!”

Pain from the spasticity can be extremely challenging. Whether it is manageable or severe varies unpredictably. “I’ve had pain intervals of months at a time,” Sean said. The spasticity and pain can interfere with his ability to move and his ability to sleep.

Sean was fortunate in that his doctor recommended an effective treatment for him from the beginning. While some people may have to try several medications over the course of their treatment, Sean’s first prescribed medication, Baclofen®, has been able to keep his spasticity under control for many years. However, as his spasticity worsened, his dose increased. “At the beginning, I took one pill in the morning and that worked. But then it was two, then three.”

Sean now takes 60 mg of Baclofen a day. “I saw a specialist in spasticity. He told me that 60 mg is nearing the maximum oral dose. The next step he recommended was the baclofen pump.”

After careful consideration, Sean said he felt “awfully hesitant” about this surgical option. While many people have good results, he decided he wasn’t ready for the risks if other options were available.

Happily, another option recently became available when the Florida Medical Marijuana Legalization Initiative (known as Amendment 2) made compassionate use provisions for people with MS in Sean’s home state. According to the American Academy of Neurology, there is strong evidence that oral cannabis extract can reduce patient-reported symptoms of spasticity and pain. The process to apply for a compassionate-use card was not easy, taking eight months and costing more than $500. But Sean has already seen positive results.

“I have been taking a low-THC oil for three weeks now,” Sean said, in combination with his regular Baclofen dose. “It really seems to help quite a bit.” Before he began taking the cannabis oil, Sean said, “Even when I’d taken my medication, if I hit a bump in the sidewalk my legs would start to spasm and I couldn’t control it.” Now when he uses the oil in conjunction with the medication, his spasticity is reduced.

So what advice does Sean give those callers who are coping with spasticity? “I ask them questions. Have you spoken to your doctor about it? Have you seen a physical therapist? What medications have you tried? Have you looked into all the options? I encourage them not to just live with it. There are treatments out there that work.”

 

Story from MS Focus: the Multiple Sclerosis Foundation