Author Archives: Jen

Cathy is a Tysabri Patient Advocate

This is the last interview for New Mobility’s “MS Life” column. I became its columnist this past January, as it began to be published every other month. A new column for non spinal cord injuries will be coming, which will also include MS profiles and information. I’m looking forward to contributing to this new feature. For a look at the last column in its entirety, visit New Mobility’s website . I had the good fortune of profiling Cathy, from Navigating the Journey of MS, who proved to be a genuine example of MS strength:

When diagnosed with multiple sclerosis in 2004, Cathy, 46, soon found herself in a difficult position: she was failing to see results from two of the disease-modifying medications. Her condition rapidly worsened until she began Tysabri, the once-monthly infusion. With much success, Cathy was able to increase her strength and make great strides within six months of the Tysabri treatment. This sparked the interest of Biogen—Tysabri’s creators— who asked Cathy to become a patient advocate and share her MS story. “I make motivational speeches at Tysabri functions across the state of Wisconsin, where I now live,” she says.

Having a former career in sales, Cathy was also prompted to start her own online MS store, The MS Shoppe. With the help of a marketing company and an attorney, she and her husband now sell MS-related assistive devices, clothing, and novelty items. “I hired a company to teach me and I have 90% control (over the company) except when I get stuck and they jump in and help me,” Cathy says.

Cathy identifies the source for her continual inspiration: her husband. She confesses that he has always been there for her during their 21-year marriage and now so more than ever. Cathy says, “My husband inspires me. He is the only person who has completely been there for me in my life. He has been my rock and has kept me grounded and motivated.”

Visit Cathy’s MS store at www.themsshoppe.com.

MS: Keeping a Daily Planner

I have to tell you that although I’m currently doing physically well (just a short-lived issue with a bladder infection in June), I get VERY stymied with how to occupy my time. It’s a catch-22: I have now down-shifted in order to feel better, but I find myself grasping for things to fill up my time. My busier contemporaries would probably chuckle over this: imagine having TOO much time! But as someone living with multiple sclerosis who is now on Social Security Disability Insurance, I am constantly challenged with finding the right balance of activities to feel worthwhile but not energy-sapped. And being happily occupied is so very important to a person’s overall mental AND physical health.

I have an ongoing relationship with a fantastic social worker. She keeps me on the path of sanity (for the most part) and she guides me with issues that are too overwhelming for me to tackle on my own. One of the greatest things she recently introduced me to was a day planner! I know this may sound crazy– I DO know what day planners are used for— but I had never considered using one, even while out in the workforce. I always assumed they were for “executive types”: business people, accountants, entrepreneurs, doctors, and so on. Not former health field workers and especially not for a stay-at-home, marginally-employed housewife.

Boy was I OFF the mark!

I was complaining one day in therapy to Nina, my copilot, about my lack of direction and my big problem with PROCRASTINATION. I have a tendency to shut down and dally when I have too much time. I need the adreneline of crunch time and deadlines to sometimes get my butt in gear. I basically work best under pressure. With no immediate pressure I find myself falling off the straight-and-narrow path (more times than I am comfortable admitting.) This is when Nina, brillant and practical social worker that she is, went to a bookshelf and produced for me a dollar store day planner. She even told me how she bought up several of them for fifty cents each, since we were well into April by this point. She also told me she had several other patients who had the same problem– for varying reasons— and found themselves without a map. Here are some tips she shared with me and I find them completely invaluable as I piece together my world during the Monday – Friday, 9 – 5 shift:

Write down ALL things you would like to accomplish

I find doing the laundry and picking up dry cleaning to be very mundane, housewife “chores.” Doesn’t matter. Listing these things ensures that even ordinary, boring tasks will get done and it establishes a sense of achievement over the small things (and isn’t divinity often found in the smallest details?) This tip increased my own self-worth and made me realize that I DO accomplish a great deal each day.

Add bigger things that you hope to accomplish

These can be things you would like to get done, such as signing up for a new class or making a lunch date with a friend. They are bits of inspiration among the daily grind. They are not basic tasks but things you would like to do.

Add loftier accomplishments in the margins, giving wiggle room for achievement

Bigger goals can be written down at the top of the month in which you’d like to achieve them. They have more flexible time frames. Glancing at them gives a general idea of the goal, with an open-ended commitment. Some things need more time to develop and be pursued.

Write plans in PENCIL

This isn’t actually cheating. It merely gives some margin for error as life often has its own plans. This also keeps a person from beating himself or herself up by having a bunch of cross-outs or unmet plans. However, erase in moderation! This also opens space for new, spur-of-the-moment plans that would not otherwise fit.

Check off tasks accomplished

Silly as this might sound, checking off items gives the planner a sense of accomplishment and some control over life’s daily duties. Looking back over the month, it also tracks how successful the planner was at tackling things.

Don’t “overbook”

Keep daily tasks at a moderate level. Over-booking can lead to stress and the ditching of plans. Find a level that is manageable and not overwhelming. Lots of non-immediate tasks can be spread out over the course of a week.

Be accountable to SOMEONE

It’s fine to make plans and try to carry them out, but if no one is keeping track, it’s easy to get complacent and procrastinate or completely shun tasks. Who’s watching anyway? Well, have someone in your life ( a therapist, a spouse, a mate, a friend ) check your monthly accomplishments. If you feel you must “turn in” your planner, like it’s a form of homework, it’s less likely that you will avoid your tasks and more likely that you will stick to your plans. As time goes on, you may not need to show your planner to anyone as you become accountable to your new, diligent self.

Reward yourself for completing tasks

Adults need gold stars too! It’s important to acknowledge keeping on track and accomplishing daily tasks. Find an incentive– a new book, a movie, a new shirt, and so on— that motivates success. You don’t have to accomplish everything on your weekly schedule (no one’s perfect), but checking off a majority of items deserves a little reward. You did it……!

Man on the Moon

Hard to believe that it’s been 40 years since the Apollo 11 space mission brought the first men, Neil Armstrong and Buzz Aldrin, to step foot on the moon. I was yet to be here, but my older brother and my parents watched on their black and white TV as a HUGE accomplishment took place. I do recall being home from school, years later, to witness the Challenger shuttle disaster (with brave teacher Christa McAuliffe as part of the crew.) Life went on and through more successes and mishaps the space program continued.

Here’s to the accomplishments of some mighty brave individuals who have inspired us to push beyond our imagined limits, and to see that we’re all little wonders within this vast universe.

Your Input: National MS Society Survey


The National MS Society is conducting a survey to learn more about MSers’ wishes for the organization. An overhaul is currently in the works, and the Society’s development specialists want your input. I’ve been asked to present the link to this survey at my site (it is the same survey recently presented at Brass and Ivory) in order to assess MSers’ needs and wants. Please take the time to make your voice heard: Do you want more Society online community/interactions? Do you want more outreach programs? Do you want more fundraising activities? Let the National MS Society know your wishes:

www.nationalMSSociety.org/srsurvey

Multiple Sclerosis and Perspective


I don’t have a great deal on my mind……about my own MS. Shoot: I think I just dangled a participle, but anyway……..My mind doesn’t automatically turn to the culprit when I’m in remission. Although it has greatly impacted my life, it still does not dictate a great deal of who I am. And this could be because I am writing from the perspective of someone with a moderate case: I am in the middle stages of middle-of-the-road, neither-mild-nor-progressive, waxing-and-waning multiple sclerosis. Ask someone with progressive MS what they think about the condition and the answer could be completely different. It’s all a matter of perspective.

My non-MS friends see my condition from another perspective: as among one of the challenges our group faces. My good friend was recently diagnosed with lupus, and so she lives with a new perspective and she has completely changed my view of my own condition: I am not the only one with ongoing problems and this knowledge opens the door from a lonely, isolated existence to one of similar understanding. I’m so glad for this. A couple of my other friends face ongoing addiction problems and so their understanding is a bit different but nonetheless helpful. One does not always need a duplicate perspective to empathize. My sister-in-law gives me the biggest laugh when our bowel difficulties— she has the autoimmune condition ulcerative colitis— act up. Two people with very different personalities can still enjoy the spoils of a shared perspective.

In terms of the world at large: I never want to imagine that my multiple sclerosis is any bigger than the dot that is our planet within our solar system, within our galaxy, within the entire universe. The perspective of Earth from a million light years away is imperceptible. In space and time, my disease is but a blip on the radar. Back here on Earth I’d rather worry about the two recent American journalists who were wrongly imprisoned in North Korea. They certainly have bigger concerns than I do. Or tread lightly when I read Eli Wiesel’s Night, and know that I am safely tucked in at bedtime. These grave views throw my own perspective into perspective.

How do doctors view this chronic condition called MS? Do they fully sympathize with patients, or do they merely look for scientific evidence and concrete solutions? Would the perspective of an MS doctor afflicted with cancer change his demeanor towards his patients? I shudder to think of that multiple sclerosis doctor who absently treated me, all the while looking at life from his own distorted angle. And yet I didn’t see life from his exact perspective (and how could I?) I am now able to indulge him his inaccuracy. As for the people who represent those with multiple sclerosis: can we come to a shared, mutual perspective? Will we ever agree on the same values, needs, priorities, and programs? Can you— will you?— ever see through my mind’s eye? Will I ever know your true intentions and hopes for a world free of MS? I cannot currently see through your lens.

Will my own image of multiple sclerosis change? Well, sure. Everything changes and angles slant and rotate. Nothing is ever exactly the same, nor should it be. The knowing is all: I set my lens wide for perspective and deep for understanding.

The 4th of July and Keeping Cool

It’s now the height of summer in the northern hemisphere and as people celebrate this 4th of July weekend, thoughts turn to keeping comfortable and cool. For people with MS, it’s always a good idea to avoid overheating to keep the nerves conducting as well as possible, but staying indoors on a sunny day can be a big drag. A great way to keep body temperatures down is to use portable cooling devices such as vests, neck wraps, and wrist wraps, depending on your needs. Cathy, at Navigating the Journey of MS, has an online multiple sclerosis store, The MS Shoppe, which sells a variety of these cooling devices. She opened this store with her husband to provide consumers with quality MS merchandise, including MS books, mobility devices, funny t-shirts, nightlights, and other relative multiple sclerosis items.

Early Smoking Linked to Increased Risk for MS?

Recent research about multiple sclerosis and smoking has peaked my interest: I learned to smoke when I was in eighth grade and although I was never a regular smoker, I did do it at parties in high school and college and beyond. Also during tense conversations with friends as almost a “bonding” mechanism. This is probably considered recreational or social smoking, which I’ve been able to tame as of late, but I recently became curious about the notion that EARLY smoking habits might affect the chances of developing MS. Here’s what I learned:

A new scientific study reveals a possible link between smoking at an early age and developing multiple sclerosis. Johns Hopkins University of Medicine, in collaboration with the Veterans Affairs MS Center for Excellence, recently conducted a study with MS patients— 87 in total— to determine the likelihood of developing MS if a patient was an early smoker (under the age of 17 when beginning the habit), an older smoker (starting above age 17), or a nonsmoker.

Out of the study participants, including 435 individuals without MS, early smokers were 2.7 times more likely to develop multiple sclerosis compared to nonsmokers. Older smokers were not found to have any more of a risk than non-smokers.

*For more information about the study and related materials, see Johns Hopkins Medicine.

Adjusting to Change: Diane J Standiford

I recently had the pleasure of interviewing Diane J Standiford for part of New Mobility magazine’s MS Life column. The page is essentially for those with moderate to progressive MS, who are encountering new paths of mobility. I quickly thought of Diane and wanted to interview her, since she has a great deal of multiple sclerosis experience and she also has a GREAT attitude. She’s hilarious, straight-to-the-point, and yet serious and full of compassion. The following is the unedited version of the profile, which was published in the June issue. The piece is a quick shot: roughly 225 words. It doesn’t always do the candidate justice, and so there is consideration for doing a feature article about Diane’s assisted living experience next year:

Diane J Standiford was diagnosed with multiple sclerosis in 1990, and she was able to remain in the outside workforce nearly 14 years following that day. Working for the city of Seattle, she had her first serious relapse during her first week on the job. Although frustrating, she persevered and continued to live in an independent apartment with her partner. Says Diane: “My first serious symptoms started my first week at my new job. I was out in the workforce for 18 years until retirement, full-time, with lots of overtime. At one point I telecommuted several days a week.” Diane retired from her job in 2004.

On the home front, Diane and her partner of nearly 3o years have contended with a life of challenges together. Both have been using power chairs for some time; Diane for her MS and her partner for several progressive, chronic conditions of her own. “I’ve been her caregiver, then she mine, and we’ve usually taken turns, by fate and not by choice,” says Diane.

A bend in the road came this past year, when Diane and her partner found themselves needing to move to an assisted living facility: a once manageable life had become increasingly difficult. Settling in, Diane has now found camaraderie with her neighbors and finds herself reading, playing pool, and participating in group activities. Her response to the move: “Keep your sense of humor and consider the move an adventure.”

Diane has a multiple sclerosis blog, A Stellar Life, where she records her personal journey and comments on news items of the day. She is currently working on WALKING, which is absolutely amazing and a testament that a great deal is possible, if a person sets her mind to it.

Telecommuting Work for those with Disabilities

Having multiple sclerosis and also having been sparsely employed for the past five years, I understand the frustrations of finding decent, manageable work. Living with a disability can make staying out in the workforce, whether full-time or part-time, a very difficult task. I am now on Social Security Disability Insurance (SSDI), but I am still able to work part-time on top of this benefit.

For two winters I found myself employed (seasonally) by a telecommuting company that specifically hires those with disabilities: The National Telecommuting Institute. This agency is located in Boston, MA and it works with clients’ vocational rehabilitation counselors to train them in online customer service work. NTI also gives refunds to staff for out-of-pocket expenses— internet connection, phone services, equipment purchases, and so on— and it helps staff maintain work while continuing their disability benefits. If clients are not receiving disability insurance, they also have some opportunities to work full-time (in the comfort of their own homes.)

Another telecommuting company, located in Colorado, is Alpine Access, which employs customer service staff for businesses such as credit card companies, retail stores, direct marketing companies, and airline corporations. There are generally more employment opportunities with Alpine Access, although NTI tends to work more supportively with its staff.

NTI is currently recruiting for its seasonal Internal Revenue Service program. This is the project that I worked on for two winters (November through April), and it is a great launching pad for future customer service work with NTI, Alpine Access, or other telecommuting agencies.

Out on Leave

Bill and I are heading out early tomorrow on a road trip to Savannah, Georgia and Hollywood, Florida. He has work-related stuff down in Hollywood, so we’ve decided to make this a full-blown (and much-needed) vacation. I’m really excited about Savannah: it’s supposed to be the most haunted city in America. I always thought New Orleans was (THAT was a great trip, too!) And one of my favorite books—an account of true Savannah events by Esquire journalist John Berendt — is Midnight in the Garden of Good and Evil, which chronicles southern charm and MURDER. Very interesting and ironically funny. I definitely want to check out the cemetery where some of the “voodoo” happened.

Be back in Jersey on June 7th….

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