MS Articles
New Mobility Magazine is a national print magazine for people in wheelchairs, due to MS, Post Polio Syndrome, Spinal Cord Injury or other reasons. We have found the magazine to be very helpful to us. Also, Elizabeth & I were in an two articles; the first about Progressive MS in the August 2002 issue, and the second about some fun urinary leg bag art Elizabeth does for me in the June 2003 issue. Some of the articles are available online (not the ones we were in, unfortunately). However, here are the articles printed with their kind permission.
... the August 2002 article
THE LOW END OF THE ROLLERCOASTER
by Josie Byzek, from New Mobility Magazine, August 2002
(Copyrighted material, used here with permission)"PLEASE anyone got information on primary-progressive MS?" reads the subject line on f.hughes3's post to an on-line MS support group. His message is brief: "Five years ago I was diagnosed with MS. Now I discover I have primary-progressive MS. ... I am shocked to discover it is one of the few forms of MS whose course is almost entirely predictable. The ignorance of ... neurologists is astounding and shocking. Everything I have read ... is for relapsing-remitting MS."
F.hughes3 has just joined an exclusive club. About one in a 1000 people in the U.S. develop MS, and a mere 15 percent of these develop a form of progressive MS. F.hughes3 is not the first progressive MSer to notice the lack of info and resources for the rarer forms of the disease. Progressive MS hits harder and creates more needs than other forms of MS, yet many people living with it say they're treated like stepchildren--the bulk of attention, funding, research and general resources goes to the mildly or moderately disabled MSers.
"We're in the minority and are treated as such!" says Christina Rouse, sharing the common frustration of those with progressive MS. "All you ever hear about is relapsing-remitting and secondary-progressive. The majority of these folks aren't severely disabled, don't use wheelchairs, all work and are the ones nominated by the National Multiple Sclerosis Society for mother or father of the year." The Valley Stream, N.Y., woman wants to know about progressive MSers like her. "How do they manage to do all of the wonderful things they do, like live a life ... happily?"
Like most other progressive MSers, Rouse mostly has MS in her spine, and so considers herself akin to those with spinal cord injuries. "I do not have cognitive problems nor eyesight nor bladder problems ... I have paraplegic legs and I type with my two index fingers so my focus is on SCI, as it's pretty much the same thing," says Rouse, 52.
Richard Schwab, of MS Quads, an Internet newsgroup open only to those with severe MS, makes a starker distinction: "Many of us in MS Quads believe that progressive MS and relapsing-remitting MS ... should be classified as two totally different diseases." Schwab's progressive MS leaves him with little energy. He still works part time for eight hours a week, but the three-hours-at-a-time stretches wear him out. He once managed warehouses and telecommunications for Harrisburg, Pa.-based Credential Leasing. Now he mostly reviews telecom bills and generates computer reports detailing phone use.
"It's hard for our friends and relatives to understand how different relapsing-remitting and progressive MS are," says Richard's wife, Elizabeth. "They see articles about drugs for relapsing-remitting and tell us about them, asking why Richard doesn't do this or that. They just see MS as one disease, and it's really not."
Since even the NMSS focuses primarily on the milder types of MS, many progressive MSers have an axe to grind with the leading MS organization, says Adrienne Barhydt, Web master and founder of MS Quads. "I know that I feel--and I believe others in my group feel--betrayed by the NMSS. The society largely acts like we do not exist and doesn't provide the information that we need. Have you ever seen a brochure from them on pressure sores, for example?"
In her newsgroup description of MS Quads, Barhydt writes, "Most organizations for people with multiple sclerosis seem to focus on people who are newly diagnosed or have relatively mild symptoms. They usually leave me feeling left out, even unwanted. Information they provide on symptom management, medications that would make me feel worse and have, at best, a small chance of stabilizing my condition, drug trials you can't qualify for unless you can walk--[these] are largely useless to people with very advanced multiple sclerosis. People with MS who balance four kids, full time jobs, volunteer work and more are not inspiring. Internet-based Web sites and forums and lists for the most part display the same bias."
Barhydt says progressive MSers need the same info that many with SCI receive in rehab. "Neurologists don't have a clue about this stuff. I wonder if they even know to refer people to a physiatrist." Physiatrists are certified specialists in rehab medicine who diagnose and treat physical disabilities using a team approach that considers the person with a disability as a team member.
What's the Difference?
Sometimes it seems there are as many types of MS as there are people who have the disease. Due to its nature--random attacks on the central nervous system--there is no set pattern of symptoms. In other words, when a person is first diagnosed, no one--no family doctor, neurologist, shaman or guru--knows what MS will do to that person. Still, over the years experts have discerned general patterns.
About 20 percent of MSers have one or two initial attacks and then their MS tends to disappear for decades, or forever. Accordingly, their MS is called "benign."
Another 25 percent of MSers have lesions that appear from time to time, wreaking temporary havoc on the CNS and then disappearing, taking the symptoms with them. This type of MS, relapsing-remitting, can cause a host of symptoms that quickly disables a person ... and then lets them go. About 10 percent of people with relapsing-remitting MS live out that pattern for their entire lives--MS is a bother, but can be coped with. Within 25 years, 90 percent of this type of MS progresses into what is called secondary-progressive MS. In this form, each time a relapse ends, some symptoms linger. These impairments build up; over time the person doesn't have clear exacerbations anymore, just a slow loss of ability.
Then there is the small percentage of MSers who are hit hard from the jumpstart and never fully recover, or who slowly lose abilities with no real exacerbation to blame, no real recovery from hits. These people have progressive-relapsing MS and primary-progressive MS. Progressive-relapsing MS is the rarest form of the disease, accounting for 3 percent of the total MS population; primary-progressive MS accounts for 12 percent. The first type has marked exacerbations with little or no recovery in addition to a steady progression, and the other generally has no exacerbations, just a leaking away of ability. Progressive types of MS tend to be much more severe than relapsing-remitting types, with initial disease activity in the spinal cord, not the brain, leading to symptoms that resemble SCI rather than relapsing-remitting MS.
Patient, Treat Thyself
"It's not that I'm a sissy, I've lived with pain for half of my 49 years of life," says Debbi Stukas, an MSer from Cleveland, Ga. "At one point I was in such agony during an exacerbation I would have agreed to have them drill into my head, I was that desperate." She used to take Baclofen for her spasms, but stopped when she started Neurontin. "Read all the tiny print on the drug descriptions and precautions," she says. "Some meds can create the very symptoms they are supposed to help--like Baclofen can cause muscle cramping. The neurologist kept upping the Baclofen as my muscles kept cramping up and the muscle cramping increased when the Baclofen increased." She stopped taking the Baclofen and the cramping stopped.
Recently, Stukas underwent steroid injections in her back due to degenerating discs. "Are my degenerating discs a result of so many years of steroids? Good question. Seems ironic to use steroids to relieve what steroids may have caused in the first place. I went for it because my back pain was horrible."
It's hard to find drugs or traditional treatments that put a dent in progressive MS symptoms, says Karen Stone, a writer with progressive MS from Albuquerque, N.M. Author of Awakening to Disability, Stone says, "For progressive MS, I feel the drugs only produce false hopes and put a lot of money in certain peoples' pockets. To date, nothing has proven to help those with progressive MS. In fact, more often than not, I hear anecdotes of those with progressive MS who feel better after they stop taking drugs, the side effects are so horrible."
Pain is a good example of a largely untreatable progressive MS symptom. Like SCI caused by trauma, progressive MS causes many kinds of pain--burning pain, stabbing pain, lower back pain and so on. Stone says she had pain for three years and no traditional Western treatment helped. She experimented with alternative treatments and eventually discovered that gentle cranial-sacral massages reduce pain.
Schwab agrees drugs aren't always the answer. He says the only two prescribed meds that help him are Caverject for erectile dysfunction and Paxil, an antidepressant. Like Stone, he experimented with alternative treatments until he found a regimen that works for him. Acupuncture helps with pain and bladder function, massage and Chi Gong increase his flexibility and decrease spasticity, hydrotherapy keeps his muscles toned, and self-hypnosis--taught to him by a psychiatrist--helps him manage pain. "The alternative therapies have been much more helpful than the standard medical treatments of Solumedrol, Betaseron and Copaxone," he says. "I had very bad reactions to Betaseron and Copaxone and the steroid did nothing but put 20 pounds on me."
Betaseron, Copaxone and Avonex, this generation's miracle drugs, may slow down the frequency of relapses for people with relapsing forms of MS, but are not indicated for use by people with progressive MS. Some neurologists prescribe them anyway, preferring the unlikely something to the more likely nothing. Solumedrol is a supersteroid usually given intravenously over three days.
"If you are thinking about steroids, I would shout don't go there! It is pure conjecture whether steroids actually work or whether they make MS worse," says Derick Bird, who lives in Birmingham, England. "I know this from experience of having had daily intramuscular injections of ACTH. All this achieved, after four weeks, was weight gain ... I now resemble a mobile jelly wallowing around!"
Bird, 57, voices the common frustration of progressive MSers--"I appreciate that sometimes, in our desperation for a 'cure' we will try anything, but look at the history of drugs used for MS. Vitamin B12 injections were once suggested but had no lasting effect. ACTH was supposed to be a godsend but is no longer prescribed. Intravenous steroids with a short period of hospitalization is not universally used, with some neurologists saying this is the answer whilst others dismiss it. We were told about a low-fat gluten-free diet ... a near starvation diet with some people looking decidedly anorexic. We were once told to have mercury fillings removed from our teeth. I just wonder how much we adopt for ourselves the doctrine of self-determination," says Bird, a lawyer who recently gave up practicing due to MS progression. "What we put into and poison our bodies with ... do we gladly take without question what is prescribed for us by our neurologists?"
Don't Dwell on it--Deal With it
James Peel, an MSer from Hamilton, Ontario, says, "There came a point where I felt not so much as a guinea pig, but a cash-cow for the medical and psychiatric professions. I realize this only happened with my permission and was due to my ignorance." Peel's insight came after he read an article arguing that Western psychiatry is only a form of social control. "It keeps people calm, not too happy, not too sad and on a hefty drug diet. In the meantime, one's emotional life remains unstable--and this has a ripple effect on one's spiritual and physical life." He recently fired a neurologist for the first time and was amazed when his family doctor conceded Peel knows more about MS than the doc himself. "In short, I realized I had to take control and responsibility of my own 'treatment.' I weaned myself off antidepressants, ceased with the psychiatrist and emotionally have not felt this good in a very long time."
Peel says he finds it is much better spiritually and emotionally to cry and laugh with friends than to seek out professionals who simply sit there and listen. "Things are still quite difficult at times. Physically, pain, fatigue and loss of coordination is tough ... life has become very small and loneliness is difficult. But I no longer feel a perpetuation of illness in my life, if that makes any sense, and I at least feel human again."
Rouse echoes Peel's new insights. "I don't dwell on the MS, I deal with it. ... but I do need a cure--now, and it just ain't happening for progressive MS folks who need it more!" Yet, even so, she says life is sweet. "I have a wonderful family and cannot complain ... I'm still in love with my husband of 26 years, my kids are beautiful and smart and keep me laughing." She stresses MS does not make her a better person or more appreciative of life. "I was a good person and appreciative of things before MS. But if I'm OK with the MS--you'll be OK with it, too. If I'm able to deal with it--you'll be able to deal with it."
Progressive MS Newsgroups
http://login.prospero.com/PMSSGhttp://groups.yahoo.com/group/MS-Quads
Helpful Books
Spinal Network, the Total Wheelchair Resource Book, edited by Barry Corbet, Jean Dobbs and Bob Bonin; Nine Lives Press, Santa Monica, Calif. Not available in book stores, call 888/850-0344, ext. 109 for more info.
Meeting the Challenge of Progressive Multiple Sclerosis, by Patricia K. Coyle, MD and June Halper, MSN, ANP, FAAN; Demos Medical Publishing, New York, N.Y.
Alternative Medicine and Multiple Sclerosis, by Allen C. Bowling, MD, Ph.D.; Demos Medical Publishing, New York, N.Y.
Caregivers and Personal Assistants: How to Find, Hire and Manage the People Who Help You (Or Your Loved One!), by Alfred H. DeGraff; Saratoga Access Publications, Fort Collins, Colo.
Awakening to Disability, Nothing About us Without us, by Karen Stone; Volcano Press, Volcano, Calif.
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... the June 2003 article, with an art sample
From the June 2003 issue of New Mobility magazine, on the MS Life page.
FUN WITH LEG BAGS
Elizabeth Schwab, wife of progressive MSer Richard, has a new hobby: She draws pictures on her husband's leg bags. "One is a beach scene that I did," she says. She's also drawn cats, snow, and fish, and her son drew a landscape of a river in China. Which one? The Yellow River, of course. "I did tell my friends on MS-Quads about it and most of them thought it was weird, but I don't care - I like doing it," says Schwab. "People who see the bags seem to like them."
