Living With Multiple Sclerosis
- Art Alexakis, of the alternative-rock band Everclear, which emerged from the ’90s, was diagnosed years ago with Multiple Sclerosis (MS) a chronic illness in which the immune system eats away at the protective covering of the body’s nerves.
- Since his diagnosis, the 62-year-old musician has continued touring with his band and recently revealed that staying on the road and continuing to perform has helped him amid MS and his sobriety.
- Multiple sclerosis, or MS, is a disease of the brain and spinal cord where the immune system attacks the protective layer of nerve fibers called myelin causing communication issues between your brain and the rest of your body.
- If you’re an MS warrior in need of inspiration, check out SurvivorNet’s Multiple Sclerosis page for moving content including films about other MS warriors like Art Alexakis.
- Music therapy is a resource cancer may patients turn to during treatment. Music therapy includes “creating, singing, moving, listening and/or relaxing” to the sounds of your favorite songs according to the National Cancer Institute. This form of therapy can help relieve depression, stress, anxiety, and pain.
The 62-year-old musician—who has continued performing with his band, known for their songs “I Will Buy You a New Life” and “Father Of Mine,” and is set to play in Santa Fe Springs, California, later this month, and in Eugene, Oregon, in May—appears to be doing well in his recent social media posts and recently revealed that staying on the road and continuing to tour has helped him amid MS.
Read MoreSpeaking to The Atlanta Journal-Constitution last year, Alexakis said, “I have a very special thing that I’ve achieved in my life. I don’t take it for granted. It’s wonderful.”View this post on Instagram
He admitted during the interview, “Touring keeps me going cognitively and physically. It’s a good situation. I have a friend who’s a quadriplegic and he does all this stuff, paints, cooks. He’s amazing.
“When I see that guy and people like that, I just shut up and go about my day.”
Looking back on his most popular songs, including “Santa Monica,” and “Wonderful,” and how he plays them at his concerts, Alexakis said, “I am grateful for those songs. I get very frustrated with bands that don’t play their hits. I think that’s arrogant, elitist and lazy. That being said, the perspective changes as time goes on. We’re not the same guys we were in our 30s. The words mean different things for me now.”
He continued, during the interview which took place shortly before Everclear released a double live album, “I still feel like I can get into the character of those songs to communicate them. My songs aren’t songs you can phone in. I concentrate on singing it, emoting it. I love our music. I love the way the crowds respond to them.”
Alexakis, who has been sober since 1989 when he stopped drinking, recounting, “I didn’t always act sober. I’ve been married four times. It’s not a accident. I was not a good husband. Thank God I figured it out with my current wife of 19 years. It’s been awesome.”
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Art Alexakis’ MS Diagnosis
As for when Alexakis revealed on social media that he was living with MS, he was 57—several years after he received his diagnosis.
Speaking to Rolling Stones in 2019, about why he decided to go public with the news, Alexakis said, “I’ve never really hid from this. My friends and family knew. And if I met people who have MS, I would talk to them about it and commiserate. But I started hearing from family and friends that people were saying, ‘You’re drinking again’ or ‘You’re on drugs because you stumbled onstage or forgot lyrics.’ Well, to be honest, I’ve always forgotten lyrics my whole time.
“Also, a lot of people have these symptoms and aren’t doing anything about it. I don’t know why. Maybe because they’re young, vibrant people in their 20s, 30s or 40s. I’ve had 22 people write to me [since the announcement] and say, ‘I think I have these symptoms and I’m in my 50s — should I go to a neurologist’ I say, ‘Of course you should go to your doctor and get an MRI.’ It could be another autoimmune disease like Parkinson’s.”
“Go figure it out. That’s one of the reasons I wanted to talk about it,” he added.
Alexakis then recounted an accident that occurred in April 2017 when he was picking his daughter up from school with his dad and son in the car. He said he ultimately had to pull the parking break in his car and they crashed into a big Jeep, and thankfully there were no injuries.
He continued, “Two weeks later, I noticed a twinge in my right arm. I had that years before from snowboarding. I called my doctor and he said, ‘I’ll fix you up with an MRI and give you an epidural in the neck.’ So I walk into an examination room and there’s like six guys in there, and they all stopped talking. I went, ‘Oh, shit — what did I do?'”
“One was a neurologist who wanted to do another MRI, so I went right then and there and did another one in my brain to see if there lacerations on my brain as well. And there were. And they told me they were pretty sure I had MS and referred me to a specialist. I went out to the car and called my wife and cried for the first time in a long time. I cry during movies but we’re talking about weeping. Men don’t weep. When I heard ‘multiple sclerosis,’ I’d heard the phrase but didn’t know what it was. It felt like a death sentence. It sounded like cancer.”
More On Living With Multiple Sclerosis
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- ‘Don’t Stop Me Now’ Is Inspiration for Anybody With Multiple Sclerosis
- Sisterhood of Support– Shannon Doherty, Selma Blair & Sarah Michelle Gellar Together During Cancer, MS, and Life
- Living With MS, Former Marine, TV Host Montel Williams, 67, Says “There Is Power In Lifting Each Other Up”
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He also revealed to the Rolling Stones that a specialist ultimately confirmed his MS diagnosis and prescribed him a drug called Copaxone, explaining, “He gave me a good prognosis. He said, ‘As you get older, your balance will get worse and you may need a cane, but I don’t think you’ll need a wheelchair or get incapacitated.’ I have a good prognosis compared to other people. I’m managing with the medication. My wife is very positive and very strong.
“I have to give myself injections three times a week, which I don’t like. It’s not intravenous. It’’ into the fat. I don’t have a lot of fat so it’s hard to do. I’ve been clean and sober off drugs. I’m a recovering junkie. So I don’t like needles. But when it comes down to it, the prognosis is ‘you’re going to be okay for the next 20 or 30 years.’ I would love to live another 30 years.”
As for how MS has affected how he life, Alexakis said he’s has “always” had a strange way of walking, but he continues to play music.
He explained, “I can’t run anymore because I’ll trip over my feet. One of my main forms of exercise now is swimming. It’s good for people with auto-immune disease.
“You’re not supposed to get overly cold or heated, so swimming is good for that. It’s not a bad idea to have a better diet. When I found out, I was smoking six to eight cigars a day. I cut that out after a year. I read that nicotine doesn’t help. I’m an addict, man.”
What is Multiple Sclerosis (MS)?
Multiple sclerosis is a potentially disabling disease of the brain and spinal cord. The disease causes the immune system to attack cells that form the protective sheath that covers nerve fibers in the spinal cord. The disruption leads to communication problems between the brain and the rest of the body.
Once the protective barrier is damaged, the spinal cord struggles to send messages to arms, legs and other parts of the body to function normally.
There is an estimated 1 million people battling MS in the United States.
The Four Types of MS
The different types of MS include:
- Clinically isolated syndrome (CIS): This is when an individual experiences a single neurological episode lasting 24 hours or less. CIS is what MS is diagnosed as until there is a second episode.
- Relapsing-remitting MS (RRMS): The most common MS among the million people battling the disease in the US, RRMS is marked by sudden flare-ups, new symptoms, or worsening of symptoms and cognitive function. The condition will then go into remission for some time before reemerging with no known warning signs.
- Primary progressive MS (PPMS): These individuals have no flare-ups or remission, just a steady decline with progressively worse symptoms and an increasing loss of cognitive ad body functions.
- Secondary progressive MS (SPMS): This is an almost transitional form of MS that progresses from RRMS to PPMS.
MS Symptoms
Common MS symptoms can include:
- A numbness, tingling, or sudden weakness in the limbs that affects just one side of the body.
- An electric-shock like sensation when moving the neck.
- Tremors and small seizures.
- A lack of coordination or unsteady gait due to weakened legs.
- Partial or complete loss of vision in one eye.
- Painful eye movement.
- Double vision for prolonged periods.
- Blurred vision.
- Slurred speech and forgetting common words.
- Fatigue.
- Problems with bodily functions.
- Loss of bladder control.
- Inability to perform sexual functions.
MS Treatment
There is no cure for MS, but MS warriors battling the disease do have methods to manage their symptoms.
Common tools MS patients use to improve quality of life include wheelchairs, canes, leg braces and some medical treatments called disease-modifying therapies (DMTs).
A study in American Family Physician found DMTs “has been shown to slow disease progression and disability; options include injectable agents, infusions, and oral medications targeting different sites in the inflammatory pathway.”
DMTs help stave off attacks of the disease and prevent relapses, which are triggered when the central nervous system becomes inflamed.
The drug mitoxantrone, which has been used as a DMT, is currently the only chemotherapeutic agent approved for treatment of MS in the United States. An injection is usually given once every three months for about two to three years. The drug only helps control the disease and does not cure it.
While chemotherapy is widely known as a cancer treatment, it is also effective at slowing down or stopping disease activity in MS.
How Turning to Music Can Help Amid Battling Disease
Creating and listening to music can be a powerful tool. Most people have felt the positive effects of a musical experience, but fewer people know there is actually science to back it up.
“Just listening to music activates more brain regions simultaneously than any other human activity,” Dr. Alexander Pantelyat, a neurologist at Johns Hopkins, previously told SurvivorNet.
New Evidence About The Healing Power of Music
We admire Alexakis’ resilience on continuing to perform amid the ups and downs of MS and sobriety.
A study published last year in the journal Parkinson’s Disease researched the effects music had on the brain. It found music can help reduce anxiety for patients. Dr. Serap Bastepe-Gray, who co-founded the Johns Hopkins Center for Music and Medicine with Dr. Pantelyat, led the study.
“The guitar, which is portable, affordable, and one of the most popular instruments in the U.S., has potential as a motivational therapeutic tool both in the clinical and community settings,” Dr. Bastepe-Gray said.
Music therapy is a resource cancer patients turn to during treatment. Music therapy includes “creating, singing, moving, listening and/or relaxing” to the sounds of your favorite songs according to the National Cancer Institute.
This form of therapy can help relieve depression, stress, anxiety, and pain.
Pancreatic cancer survivor Joel Naftelberg can also attest to the power of music, as he found the support he needed from his music family.
Cancer Survivor Joel Naftelberg Learned to Dance on His Problems
“The people that were my heroes in entertainment and rock and roll have been my friends and have been some of the most supportive people that I’ve had in my life,” he told SurvivorNet.
Naftelberg describes his cancer as a “monster.” It’s “attacked every facet of [his] life,” but that doesn’t mean he’s let it get the best of him. Music has been his saving grace.
Singing His Way Through Cancer Treatment — Keep Living, Says Tripp Hornick
“I have found music and rock and roll to be transformational,” Naftelberg said. “Doesn’t necessarily solve anything, but it does let us dance on our problems for at least an hour or two.
“Nothing better on a Friday afternoon than to hang with your friends and listen to beautiful music.”
WATCH: The benefits of finding time for joy amid health struggles.
Contributing: SurvivorNet Staff
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