Author Archives: Jen

Multiple Sclerosis and Guilt

A few years ago I found that my MS was becoming more of a burden for my loved ones as well as for myself. I was missing out on so many ordinary things: work, family outings, time with friends, holiday get-togethers, and so on. Plans were constantly being modified or cancelled. One of the biggest ramifications was the loss of my driving abilities for eight weeks when I had to rely on family members and friends to get me to my job and take me to run errands. And the loss of a steady income caused my husband and me to accept financial help from others. Tough break and it all weighed heavily on my mind as I tried not to feel guilty about all the trouble my multiple sclerosis was causing in my life. I began therapy around this point and learned a few valuable lessons about guilt. I wrote this article a couple of years ago for Suite101.com, and the information still holds true today:

“Multiple Sclerosis Guilt”

A very real and harrowing side-effect of multiple sclerosis is guilt. Those with the disease feel it for a variety of reasons: they can’t do all the things they once could, plans often have to be cancelled due to the condition’s unpredictability, people don’t understand the “silent” symptoms and consider MSers lazy, and the list goes on. On the flip side, those who are affected by someone with MS harbor their own guilty feelings, often because they feel helpless or punished by the disease’s effects. Reality checks as well as coping strategies can counteract needless bad feelings.

The first form of guilt, something the MS sufferer contends with, can manifest itself for various reasons. People with multiple sclerosis can have a very slight to rapid decline in mobility. Whatever the level, bad feelings can emerge because the patient finds himself or herself less capable than before. Even a small decline reminds a person that he or she might need other people’s help for what seem like simple tasks. A big problem that stems from the unpredictability of this disease is the guilt associated with cancelling plans. It is so hard to keep a normal schedule when MS rears its head whenever it wants. Multiple sclerosis sufferers worry that others “just won’t understand.” Another problem is that silent symptoms, or those only apparent to the sufferer (tingling, heat sensations, pains) can make the person with MS appear lazy because they look fine on the outside. Perhaps the hardest guilt-trip to get over is the question, “Did I do something to cause this disease?” A lot is still unknown about multiple sclerosis, including its definite origins.

Caretakers, family, and friends are no less sabotaged by guilty feelings. They are upset that they cannot do anything to stop MS. Helplessness breeds guilt. It is difficult to watch a loved one deteriorate, even a little bit. While watching this happen, another sort of guilt can set in: family and friends are fine, while the multiple sclerosis sufferer is being attacked by his or her own body. This is much like the emotion felt by a person who is spared in an accident, while someone else is badly injured. Maybe the secret guilt of being angry with an MS sufferer is the hardest to bear: limitations and burdens caused by the latter can breed resentment on the loved one’s part.

Guilt needn’t be an out-of-control emotion. Sometimes a reality check is necessary. Regardless of the levels of disability, both multiple sclerosis sufferers and their loved ones need to realize that this disease is life-altering. There are not always quick fixes and problems are to be expected. People can learn to stop beating themselves up over uncontrollable circumstances: coping strategies for everyone include therapy and/or support groups (both in-person and online) to learn techniques for dealing with MS. A great way to find in-person support is to contact a local hospital. Depending on the level of disability, a person with multiple sclerosis can gain the support of occupational and physical therapists (for better independent functioning), friends and family, and spiritual groups. Family and friends can do the same by accessing caretaker support groups as well as at-home care for their loved ones. As some say, guilt is a wasted emotion, and controlling it is a wise step towards overall better health. Find out more about guilt derived from chronic illness in the article Guilt in Autoimmune Disease by Elaine Moore.

What is Tysabri?

Tysabri, a disease-modifying medication indicated for the use of treating numerous autoimmune diseases including multiple sclerosis, is a lab-produced monoclonal antibody. This basically means the drug works to prevent an autoimmune attack where immune cells (for reasons unknown) fight their own body tissues. In the case of multiple sclerosis, this involves the immune system attacking the coverings of the nerves located in the brain and the spinal cord (the central nervous system.)

Tysabri, or its chemical name “natalizumab”, is indicated for use in MS patients who have not tolerated or had favorable results with the disease-modifying injectable drugs– Avonex, Betaseron, Copaxone, or Rebif— or for serious initial multiple sclerosis attacks where a stronger medication is desirable. Tysabri is believed to be about 70 – 75% effective in slowing multiple sclerosis attacks and resulting disability (the injectable drugs have a varying effectiveness of up to roughly 40%.)

Tysabri patients may develop side-effects from use of the drug, including body aches, fatigue, stomach pains, headaches, lowered immunity to certain infections, an allergic reaction upon administration, and other complications. A more serious side effect is the possible development of PML, or progressive multifocal leukoencephalopathy, a neurological virus that can be fatal. Because of this very serious risk, Tysabri has a structured system for intravenous administration throughout the United States, called the “Touch” prescribing program. It is given by infusion about once a month.

There have been three reported deaths from PML after the use of Tysabri. Two were reported during Phase III clinical trials (2005) where the two patients were taking other immunomodulating medications with the Tysabri. A recent death has been reported in the United States, after several cases of PML were acknowledged this year. Because of these deaths, Tysabri is considered a controversial medication, although thousands of patients worldwide have stabilized and even improved from its use.

****For more information about Tysabri (and its administration), see The National Multiple Sclerosis Society (US), Multiple Sclerosis Trust (UK), The Boston Business Journal (a financial perspective), and The Irish Examiner (Elan, the pharmaceutical company who co-owns the Tysabri patent with American company Biogen, is based in Ireland.)

Serenity Now

I like to watch this video when my MS nerves are shot. It doesn’t change my situation, but I imagine myself as the eagle where I am temporarily free. Do you feel it too? The ending in pretty profound as time slows down.

Enjoy.

Stay Well During the Holiday Season

Happy, healthy snowman

If you have a chronic condition such as multiple sclerosis or even if you are in great health, it is important to protect against common illnesses that can ruin your holiday fun. The most prevalent things that are running around out in the world this time of year are the common cold, influenza (the flu), and pneumonia. The last two illnesses are very serious and can land you in the hospital if you are very young, elderly, pregnant, have a compromised immune system, or just happen to contract a serious case. Unfortunately, it is not uncommon for people, particularly the elderly, to die from the flu or pneumonia.

The following guidelines can help you to avoid these maladies and continue to enjoy the season:

Consider getting the flu shot

If you are elderly, have a chronic condition, a compromised immune system, if you work in healthcare or in childcare, or if you just want to play it safe, consider getting a flu shot.

The flu shot is administered yearly in the fall through the winter, and it helps to prevent the influenza virus. There are many hospitals and associations that administer the shots as an all-day project, especially for seniors. A few years ago there was a shortage of flu shots, but this year that is not the case. *Always consult first with your primary care doctor before getting the flu shot.

Wash your hands

This tip seems so simple, but many people disregard hand washing. It is important to wash before meals, after using the bathroom (especially a public one), after touching something many others have also touched (door knobs, shopping carts, money, the ATM machine, etc.), and before preparing food. If you are already ill or are in contact with someone who is ill, you should also wash frequently to avoid spreading the illness.

Unfortunately, if you are out at the mall, you may not have a sink nearby to use after touching a dirty shopping cart. A great way to clean your hands in public places is to use hand sanitizer, which is an alcohol-based product that comes in small containers, like hand lotion. This product can replace hand washing when you can’t get to a sink, and it kills about 99% of germs. It’s a good idea to get a moisturizing one, since alcohol can be very drying to the skin.

Eat well, sleep well

In order to stay healthy, you need to continually refuel your tank. Part of this refueling involves eating good, vitamin-rich foods. It’s so easy to reach for the tasty junk food at this time of year. Everywhere people are eating cookies, candy, drinking egg nog, and devouring other rich foods. Try to eat a well-balanced diet rich in protein (lean meats and fish), fiber (fruits, vegs, whole-grain breads), and low-fat dairy products (yogurt, milk, low-fat cheese,etc.) These types of foods will keep you energetic and happy, and ward off illness. Plenty of fluid intake also wards off dehydration. Avoid eating too much sugar and too many processed carbs (donuts, cookies, cakes) because they will sap you of your energy and they provide little nutritional value. Save the rich stuff for the actual holidays and visits with loved ones.

Sleep is another source of fuel to keep you running at your best. The holiday season is stressful, but it’s important to get enough rest. Without proper sleep your body will crave sugar and processed carbohydrates to give it a quick energy lift. This cycle only makes a person more tired. In order to function this year, try to refrain from doing everything all at once or at the last minute. Schedule ample time for shopping and cooking. Don’t visit too many people all in one day. Try to spread out your schedule so you don’t run out of steam. Most importantly, take a nap if you’re tired and you have the time.

Avoid sick people

The best way to avoid getting sick is to avoid sick people. If you have a compromised immune system, it is even more important to follow this tip. It will be difficult, but try to avoid prolonged contact with large groups of children (in schools or day care facilities) and prolonged time in healthcare facilities such as hospitals or nursing homes. These places are where viruses and bacteria are easily spread. Sometimes it is impossible to do this, so remember to take along a hand sanitizer and wash your hands often. Also, if you know someone has a cold, don’t feel bad about visiting them once they’re well again. No one wants to spread their germs and ruin another’s holidays. This also holds true if it is you who has the cold or flu—- try not to give the unwanted present to someone else.

****For further information about receiving a flu shot, see The Mayo Clinic.

Library Books for Homebound MS Patrons

I’ve been volunteering at a few library branches for the past five years and one of their greatest free services is a “home borrowers” program for homebound library patrons. Volunteers and staff make deliveries of print books, audio books, DVDs, CDs, periodicals, and pretty much anything else someone can borrow as an in-person patron. Volunteers are often matched with patrons to establish consistent, steady bonds when bringing books to and from their homes. Volunteers also provide services to managed-care facilities, usually delivering items to several people. If the program involves staff, a library “bookmobile” or van provides the transportation. No need to worry about returning library materials: volunteers or staff return to pick them up.

*To learn more about the home delivery of library materials, contact your local library branch.

Walking in Multiple Sclerosis Shoes

Due to my dichotomous personality, I always find myself talking in double entendres (but usually in a clean manner.) So here I am again and I’ll tip you off that I’m speaking of the literal shoes an MSer finds himself or herself wearing.

When I was a teenager, I wore light track sneakers (for sprints), cleats (for field hockey), Doc Maartens (for angst), and really hideous primary-colored flats (for style.) I had a great time in those carefree years and I’m looking forward to my 20th high school reunion this coming June.

I remember when I was in my early 20’s I paraded around in the new, hip platform shoes of the day. I thought they were the latest trend, although men and women of the 70’s had already tried them. I had a pair of really treacherous sandals that I almost broke my ankle in one day on campus. I also had two pairs of what looked like Chuck Taylor All-Stars with really thick soles. (*** my editorial obsession caused me to just fix this because I originally called them “Chuck Norris” sneakers! LOL..) They were pretty cool and very comfortable for traipsing around the Big Apple. In those days I walked like a maniac and was really fit, and I’d dance like there was no tomorrow in clubs in NYC, Trenton, and Phillie. If you asked one of my college buddies, you’d learn that I would be one of the crazy gals who would dance up by the band or to the dj’s pic before everyone else was “fortified” enough to get up and bust a move. Yeah, I was pretty uninhibited with myself.

I then became a health professional and found the joys of really good footwear: Asics, Nike, New Balance, Avia. They worked wonders for my slight decline in balance. I only crashed into one wall in my career, while rounding a corner into a breakroom. At that point neither I nor my coworkers knew I had MS. I also discovered the joys of sturdier, lower-heeled shoes with solid treads. Better for lifting the feet to avoid tripping over obstacles.

In my thirties I find myself deferring to my comfy sneakers, my Born slip-ons and closed-back clogs, and my flat-bottomed flip-flops. The flip-flops I have to admit are the most treacherous shoes I own, but I really hate to wear any footwear from May to September. So I’m more dilligent about picking up my feet. I don’t own any Uggs because pretty much everyone has them now and although they are quite exquisite, I must always be different and seek the gems that hardly anyone else has discovered. So now I’m lusting for a pair of Eastland Bree boots: I’ve had a hankering for them for about two years now, and if anyone from the family is reading this, they’d make a lovely Xmas gift. Size 7.5. Free shipping if you throw in some socks.

MS: Americans with Disabilities Act

This week at Joan’s chat room, things were a bit more serious as chatters talked about their troubles with their jobs. One woman in particular was having a rough time getting her workplace to understand her need for a certain schedule. Her union was giving her a rough time and it seemed necessary for her to seek legal action. In the Americans with Disabilities Act, disabled workers are protected under certain circumstances and can be given reasonable accommodations to perform their jobs. Disability in the workforce can be a very gray area, but knowledge of the Americans with Disabilities Act and proper counsel can help those with MS stay out in the workforce for longer periods of time.

If you are having trouble maintaining your job due to multiple sclerosis complications, you may be qualified to have reasonable accommodations in order to carry out your work. Contacting your national MS organization in your region of the world can help you to get pertinent legal information. The National MS Society in the U.S. can help American MS patients find out about employment rights, legal counsel, and the ADA. The Americans with Disabilities Act homepage can be viewed for references, and a toll-free information line gives callers access to live help.

Gift Ideas for People with MS

The holidays are upon us and it’s always nice to express some love with a gift. Folks with multiple sclerosis enjoy a lot of what others without MS do, but we often have special requests that can help our lives be a little comfier, calmer, and a little easier. Here are some gift ideas that MSers will appreciate and put to good use (bear in mind that some of the ideas– massages, cooling vests, audio recorders, and cleaning services– should be cleared with the gift recipient ahead of time):

Google Images

Gift cards for massages/ spa treatments

It’s great to be pampered and to have someone massage achy, stiff muscles or just have the opportunity to melt into the massage table as the healing power of touch takes over. There are a variety of massage treatments such as reiki (the application of the hands to certain “trigger” spots on the body), reflexology (a thorough foot/lower leg massage), hot stone massages, scalp massages, and so on. Other spa treatments such as manicures, pedicures, and facials can also lift the spirits.

Gifts to ease the daily routine

MSers want less stress and less tiresome chores. A gift certificate for a cleaning service (whether a large company or one professional) can make a huge difference. Several people chipping in resources to have someone do the heavy cleaning just once a month can make an excellent, thoughtful gift. Gift “vouchers” from family and friends to provide services such as babysitting, cooking, raking leaves, shoveling snow, or grocery shopping will be treasured.

Gifts for outside comfort and functioning

Cooling vests, which are used to keep MSers from overheating, make great gifts for the long summer months and year-round for those who live in warmer climates . Heat exacerbates many MSers’ symptoms, so these cooling vests can keep us out in the game for longer periods of time. Voice recorders, which act as “audio lists”, help those with multiple sclerosis remember grocery lists, errands, and phone numbers without carrying a lot of paper lists. Both cooling vests and voice recording products can be researched through contact with your National MS Society local chapter (U.S.) or an MS organization in your region of the world.

Gifts for outside entertainment

We also like to leave the house! Movie tickets, restaurant gift certificates (less cooking), tickets to plays or shows, and even free invites to sports events and friendly gatherings will be well-received. Making weekly dates for lunch, tea, or coffee can also put a smile on an MSer’s face.

Gifts for home entertainment and comfort

Things that make home life easier include movie subscriptions (Netflicks or Blockbuster), favorite magazine subscriptions, favorite DVDs, music CDs, print books, and audio books (for impaired vision.) An assortment of coffees and teas can make a great inexpensive gift. To make life a bit comfier, give the gift of comfortable but attractive activewear: there are many velour warmup suits and comfy men’s sweatsuits on the market that make movement more fluid and life more cozy. Warm, fun socks keep cold feet at bay. Perhaps the most unusual idea for an MSer is the gift of one or more attractive night lights. Walking in the dark to get to the bathroom or to the kitchen for some water can be a minefield of obstacles and sharp corners. Someone recently gave me a couple of pretty, stained-glass night lights to illuminate my path. I adore them.

A Great Medicare Resource

While working at Suite101.com’s health network, I found myself seeking the knowledege of fellow health writer Kathy Quan, a registered nurse with 30+ years of field experience. Kathy answered my questions about Medicare coverage and gave me some direction to find more information elsewhere. She has several websites and has written multiple books about the nursing profession, and her specialty is home health care with the senior and disabled populations. Kathy also disperses information about entering the nursing profession. If you know anyone with spirit and compassion who wants to become a nurse, Kathy is an excellent resource. We desperately need more nurses now and in the coming years. Kathy has a Suite101.com email account for correspondence.

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