Research Updates
DEALING WITH PEOPLES' REACTIONS
TO YOUR MS DIAGNOSIS
Multiple Sclerosis Spotlight
Karl Gross, MD et al.
When I was diagnosed with Multiple Sclerosis (MS), it left me feeling very scared and lonely. I wanted to get rid of that feeling by sharing my diagnosis with my friends. I had hoped that my good friends who had been there for me through other hard times in my life would continue to be there for me and offer comfort and support. Little did I know that sharing the diagnosis of having MS, a chronic illness with no known cure, would cost me some of my friends. Having been there for those same friends when they needed a shoulder to cry on or an ear to listen, I had no reason to think that they wouldn't be there for me. Was I ever wrong!
My friends said they understood how I was feeling, but instead turned around and walked away. It was not easy for them to see someone they always viewed as young and healthy slowly start to show signs of having a chronic illness such as MS. I could no longer walk a long distance without feeling winded; I could no longer sit out in the sun for fear of getting overheated and having an exacerbation; and I could no longer walk down the street without someone's arm to hold on to. So, instead of trying to understand my life with MS, it was seemingly easier for those friends to disappear. Unfortunately, I am not the only person with MS who has had this happen. It is easier for society as a whole to look away and ignore than it is to understand and accept the reality that many people are actually affected by conditions in which they have no real control.
I have since learned to be open and honest about having MS when I meet people for the first time. The folks who call back and say what a wonderful time they had and let's do it again sometime are the kind of people I want as friends, and the ones that never call you back are more than likely not worth keeping. Now I do have a small group of friends who are understanding and accepting and would do anything to help me. But, complete strangers are still the hardest and most critical of the unknown and of outward appearances that appear strange or abnormal.
Flashback...
It's an unusual hot afternoon in San Francisco. I am feeling fatigued and hot, but have to get my grocery shopping done before it gets too late. I hate grocery shopping in the first place, but I also hate driving in my car when it's hot because it has no air conditioning. So, I reluctantly gather up my car keys and make sure I have a shopping list. The shopping list is a necessity because without it I can never remember what to buy and end up getting everything I already have and end up forgetting to buy the things I don't have. I've made that mistake too many times. With keys and list in hand, I'm ready to go. The minute I get out of the front door I can feel the heat beat down on my body and I begin to sweat. I look down the twenty front steps, which now look like eighty. I take a deep breath and begin my decent. At the bottom I am exhausted but force myself to continue. My car feels like a sauna. I quickly open all the windows to let the heat out. By now I'm not only tired, but I'm also uncomfortably hot.
As I pull into the grocery store parking lot, the only open spot is way across the lot. I know the way I'm feeling that if I parked there I would never make it to the grocery store. So, I pull into one of the many open handicapped parking spaces, which are conveniently located by the front door. I grab my handicapped plaque and place it visibly to the front-side window. As I step out of my car and close the door, a couple passes by. They look at me and start whispering and shaking their heads in disapproval. They ave no idea I have MS. They have no idea I am fighting a constant battle in my own body every day. They have no idea that I'm feeling fatigued and that my legs feel as if they weigh 100 pounds. They have no idea that if I overheat I could risk the chance of an exacerbation, which would leave a scar on my brain. All the see is my outward appearance. They see a young, healthy looking woman getting out of her car in a handicapped parking spot. If only they could see what I feel!
This kind of preconceived image of what someone with MS should look like is what everyone with MS encounters every day. I have been guilty myself. When I was first diagnosed six years ago with relapsing-remitting MS, my first thought was a wheelchair. I had no conception of how I would look or feel having MS. I had no idea that MS affects people differently and that it affects people of all ages. I had no idea MS does not always physically manifest itself, but can affect people cognitively. It wasn't until I was diagnosed and educated about MS that I really understood the physical dynamics.
In retrospect, I realize that I was just as ignorant as the couple in the parking lot looking only at the physical appearance of someone and making a snap judgment. That kind of thinking is what needs to stop. Society must stop judging people based on their outward appearance. The way to accomplish this is through education and speaking out about conditions that affect a person's physical and mental well-being.
Those of us with MS need to talk about MS and share our experience with others. By doing so, society will begin to see the many different faces of MS. By educating society about MS, maybe someday we can eliminate the stereotype and not have to worry about getting nasty smirks when we park in a handicapped space.
MAINTAINING YOUR INDEPENDENCE
Multiple Sclerosis Spotlight
Karl Gross, MD et al.
I bring pen to paper for the tenth time to write a draft of an article which is so near to my heart and soul that I have no good explanation as to why it's so difficult to compose my thoughts.
Perhaps it's that extra time we all need to be completely honest with ourselves. Thoughts and emotions may flow without a course when we don't give ourselves time to reflect.
I believe that is exactly my state of affairs. I have found it impossible to limit my thoughts or maybe just adjust my abilities to process them. I'm completely sympathetic to someone suffering from attention-deficit/hyperactive disorder minus the hyper energy. "Focus" is so elusive. I can concentrate so hard but the remnants of my thoughts fly away like water through cupped hands. "Try to organize yourself," says my mother-in-law. "Just do one thing after another," I hear my husband saying. "Shut UP!" I tell them in my head. It's not rocket science to clear my desk, and darn it, I'm trying.
So, I have to reluctantly admit that I've lost the ability to consistently clean my house - not such a big deal. I can't cook and talk to my kids and have any idea what I'm doing unless I'm using a microwave. I recently discovered the joy of Crock pots. Trader Joe's (where there are good but limited varieties of stuff) food solved another issue I face - decision making.
As I approach forty, however, I've concluded that I'd really like to have a complete "grown-up wardrobe both casual and formal" rather than the jeans and sports tee-shirts that I'm forced to buy to support our kids' teams and school fundraisers.
I tried to go adult shopping solo and failed. I spent too much on just one so-so item, got tired, and went home. I can "wash up" nicely, so to speak, but darned if I can park, shop, select, size, and remember all of the other items in my day without help, let alone within a limited time period - before or after dropping the kids off at school, grocery shopping, dinner, or all-important nap time.
The next time, I called in the forces--sister and Mom, the professional shoppers. Unfortunately, I found my sister's notion of an extreme makeover humiliating. Mom's good intentions didn't help either. So, despite the blow to my womanhood, I admitted defeat and asked for help.
Rescue - Enter Alden, an experienced clothing consultant at a local clothing emporium. A simple confession and a request for help was the key. Chic Alden now calls me every two months and says "update time". I dump two faded tee-shirts and buy two more. (I have a tendency towards clutter - hence the 2 In & 2 Out Rule.) Alden also keeps a tab on how dominated my wardrobe is by black (my easy default color choice) and attempts to lure me into color.
I visit the store only during off-hours. I sit in the dressing room and wait for her to bring chothes to me. I instruct her that I don't wear sloping necklines, high skirts (chunky thighs), backless dresses (acne scars), or spiky heels. No yellow, no light green, blue or pastels period. Alden is happy to help. She gets a commission. I get service, save time and hassle and avoid a lot of fashion faux pas, while sitting comfortably in a dressing room. She even calls me in advance to let me know about upcoming sales.
Obviously, shopping isn't the bane of everyone's existence. The point is that I found a solution for this vexing problem that works for me. I hate shopping. I'm not good at it and I'm not interested in learning, but I still want to have the benefit of dressing appropriately. If you like to shop, more power to you but most likely there is some sort of chore or responsibility that you find particularly challenging. If you've tried and tried, stop making 75% effort for a 10% result. If you can, farm out as many of your non-essential, joyless, and time-consuming activities as possible - no matter how small or seemingly inconsequential.
If you don't like to blow-dry and curl your hair, get it straightened. If you like it curly but it's not, get a perm. If you hate to shave, don't. Grow a beard. Sounds silly and simplistic? Well, it is. Married couples don't usually fight about politics but do fight about emptying the trash can or setting off the dishwasher. Day-to-day life is the little things - the little things like "Who gets the last slice of pizza?"
If you start to feel that your life's consumed with an endless stream of little things that are difficult to accomplish, then it's not surprising that life might feel like a drag. Prioritize your time for success doing things that you like to do. If you can barter tutoring a child in exchange for housework, try it.
Find a quiet place and think about your day. Think about what you could really do without each day and think that you'd never miss. What is it about your life that you really like? What are the must-do's for yourself, kids, friends? The real key to maintaining your independence with MS lies in the choices we make each day.
You don't need to have a middle-age crisis to appreciate the value of your time2004 energy. And MS, hopefully, will be the closest thing you experience to a wake-up call on the value of time and energy for a long, long time.
PATIENTS WITH MS AND FATIGUE MAY
HAVE ABNORMAL SLEEP CYCLES
MSQR (23, No 3, Fall 2004)
Fatigue in patients with MS may be related to abnormal or disrupted sleep cycles, according to an article in the April issue of The Archives of Neurology, one of the JAMA/Archives journals.
According to the article, fatigue is the most frequent symptom of MS and is often difficult to treat. Fatigue is experienced by 76% to 92% of patients with MS and is often profoundly debilitating, the article states.
Hrayr P. Attarian, MD, of the University of Vermont, Burlington, and colleagues investigated whether circadian rhythm abnormalities or sleep disturbances exist in patients with MS and if they correlate with fatigue and daytime sleepiness. Circadian rhythms are the cycles of sleep and wakefulness, controlled by parts of the brain. The researchers studied 15 patient with MS and fatigue compared with 15 patients with MS without fatigue and 15 healthy people without MS.
The researchers found that of the 15 patient with MS and fatigue, two had delayed sleep phase, ten had disrupted sleep, and three had normal sleep. One of the 15 non-fatigued MS patients had irregular sleep cycles, two others had disrupted sleep and 12 had normal sleep. All 15 participants without MS had normal sleep. Nine patients with MS and fatigue scored high on a sleep scale test indicating excessive daytime sleepiness. Only two patients with MS without fatigue scored high on this test. None of the participants without MS were fatigued.
The researchers found a relationship between fatigue and abnormal sleep cycles or disrupted sleep and between excessive daytime sleepiness and fatigue in patients with MS.
"In our series of patients with MS, there was a significantly high probability of a relationship between fatigue and disrupted sleep or abnormal sleep cycles," the authors write. "These abnormalities may be playing a role in the pathophysiology of poorly understood and disabling MS fatigue." [Available from: http://www.eurekalert.org/pub-releases/2004-04/jaajpwmo41504.php)]
PRELIMINARY RESULTS FROM PHASE II CLINICAL TRIAL
OF FAMPRIDINE-SR FOR MS SYMPTOMS CALLED
ENCOURAGING
MSQR (V 23, No. 3, Fall 2004)
Acorda Therapeutics announced preliminary results of a phase II clinical trial of Fampridine-SR, an oral, sustained-release formula of 4-aminopyridine, to treat symptoms of MS.
Reporting on a dose-finding study involving individuals with several different forms of MS tested for 12 weeks, Acorda indicated that individuals on certain doses of the drug showed a trend (an effect which does not quite reach statistical significance) toward improved walking speed. The drug also showed a statistically significant ability to improve leg muscle strength. These data have not yet been published, and further analyses of the placebo-controlled trial results are under way. The press release stated that the company plans to meet with the U.S. FDA to discuss additional clinical research that would be required before the drug could be submitted for marketing approval for the symptomatic treatment of MS.
Fampridine-SR blocks tiny pores, or potassium channels, on the surface of nerve fibers, and thus can improve the conduction of nerve signals in nerve fibers whose myelin coating has been damaged by MS.
The most common adverse events reported from this study were insomnia, paresthesia (pins and needles), dizziness, and nausea. This drug has been tested in smaller studies previously, with mixed results. The company has also been conducting trials for its use in spinal cord injury. Further research is needed to determine whether the drug can provide meaningful improvements in everyday activities. (Available from: http://www.nationalmssociety. org/Research-2004Apr14.asp).
|
FortNet Home