Month: <span>December 2007</span>

An important resource for MS patients and caregivers is the Multiple Sclerosis Foundation (or MSF). The mission of the MSF is to “ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.”

The quickest way to begin taking advantage of the free resources offered by the MSF is to visit the MSF web site. There you’ll find information about MS; links to information about support programs, grants, patient services; free online publications and fact sheets and information for health care professionals.

MSF’s publications include MSFocus magazine and Support Group News, both available at no cost to MS patients, relatives, caregivers and healthcare professionals. Also, MSFYi is a free email newsletter about the latest developments in MS research and treatment. Visit the MSF Magazines and Newsletters page to subscribe to any of these publications.

All MSF services, information, literature and subscriptions to publications are provided free of charge.

Caregiver Tip: Because of the current wild Winter weather, one of the most appropriate MSF articles to start with is “Emergency Planning“.

Online Caregiving Resource

ABLEDATA is an excellent online resource which provides information on products for people with disabilities. ABLEDATA is sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR), part of the Office of Special Education and Rehabilitation Services (OSERS) of the U.S. Department of Education.

ABLEDATA offers several different types of resources including links to web sites that share information on assistive technology and other disability-related issues, a searchable “Assistive Technology Library”, product reviews, and news items on assistive technology and disability issues.

As examples of what ABLEDATA makes available: in the Caregiver section of the Resources menu there are 60 different resources for caregivers. In ABLEDATA’s long list of fact sheets and consumer guides, you’ll find the very helpful, “Informed Consumer’s Guide to Wheelchair Selection”. and the extensive (and practical), “Intensive Mobility Training for Disabled Drivers for the Safe Use of Power Wheelchairs, Scooters & Automobiles”.

Caregiver Tip: Take advantage of the information available on the ABLEDATA web site.

Online Caregiving Resource

It’s Sunday.  (And time for an opinionated ramble …)

I heard an older gentleman married a long time to his wife say, “She doesn’t have MS. We have MS.”

On the other hand, I’ve also heard and read stories of men who told their wives, “I can’t handle this MS stuff. I’m out of here,” and then they’re gone.

Without question, being told your spouse has Multiple Sclerosis is overwhelming. And as time passes, daily reminders accumulate. Most of these daily reminders can become hassles. New symptoms appear. New medicines fill your medicine cabinets (and they’re expensive).

Your part of the household workload increases because of your spouse’s fatigue. Expenses arise you didn’t imagine you would consider until old age when you might need to purchase walking canes or a walker or wheelchair.

Your life slows down because your spouse can no longer keep up with your normally quick pace. You’re feeling older than you think you should because everyone passes you and your wife.

Now that you walk slowly enough to smell the roses, you can’t because you haven’t had time to tend to them and they have died of neglect!

The emotional content of your life also changes. You deal with the daily frustrations of a partner who can no longer do all the things she or he wishes to do. Loss casts a misty shadow when you see other couples running around together … literally running.

With each new symptom or loss, it’s easy to feel like your world is becoming more circumscribed by a wall that slowly constricts closer around the two of you. In the best situation, family and friends understand the changes that are occurring in your world and continue to include you in theirs. In the worst case, MS can lead to a sense of isolation for a couple leaving them alone with each other.

The Big Question

If you are married to a partner with Multiple Sclerosis (or any other chronic disease) you understand intuitively many of the ways your spouse’s disease affects you. As I think about it this morning, one of the most character-defining moments your partner’s disease offers you is the question, “what am I going to do about this disease?”

I think the question offers only three possible answers.

1. “I can’t handle this. Goodbye.”
2. “We’re married, but this is your disease.”
3. “We have MS.”

I won’t discuss the first two responses because they aren’t about commitment. If you’re committed to your spouse, in my opinion, the only healthy position you can take is, “we have MS.” It’s the best response.

“We Have MS”

I know men who are so committed to “their” team that they’re actually sad when their team loses.  They stress about upcoming games against stronger teams and they wear clothing with their team’s logo.  They paint their chests.  They say things like “we lost” and “we won!” (And this from guys who have never played ball anywhere but the back yard.) In other words, they identify strongly with their team and are committed to it through thick and thin.

This is simplistic, men, but if you can’t cheer for your partner who has MS with the same fervor you have for your favorite team, you’re missing the point and the joys of marriage.

Strong, healthy marriages are formed in the crucible of crises. Be careful you do not read that with a negative slant.

A marriage lived in the “crucible of crises” is NOT an endurance contests! “Strong, healthy” marriages do not happen because of sheer tenacity. They are filled with their own rewards!

Strong, healthy marriages are nourishing for both partners. Even in the shadow of frequent crises; strong, healthy marriage are filled with joy and comfort.

You and your partner will never have a shot at a strong, healthy marriage if your response to your partner’s MS (or other disease) is “goodbye” or “this is your disease.”

Going back to the sports analogy, in terms of commitment, supporting your favorite team is child’s play. Being positively married to a spouse with MS is playing in the big leagues.

Caregiver Tip: For “strong and healthy”, your answer has to be, “we have MS. How do we deal with it together.”

Caring for Yourself

Literature exists because people need stories of others. Stories are why communities have libraries. Books of woe caution us. We’re encouraged by tales of people who advance against overwhelming odds. We’re quieted by stories of people with hope. Stories of others are important because they allow us to put ourselves in another’s place.

Stepping outside the world of literature, we seek stories about others directly. We ask, “how is ol’ so-and-so doing?” We keep track of people in our communities through the stories we share of their lives. (Of course, this verbal tradition can easily slip into gossip when our motives are too self-centered.)

Here’s the target of this post: In addition to reading books about people who struggle with and overcome the effects of Multiple Sclerosis and finding online support in web sites, consider joining an MS support group.

A Multiple Sclerosis support group is typically comprised of people who have multiple sclerosis. Some support groups invite family members (if not to every meeting) at least to celebrations like a Christmas party or afternoon in the park.

MS support groups are typically not psychotherapy groups. Rather, they are groups of people who offer support to each other as they are able. The focus is usually on how to manage life, maintain health, access resources in the community, and share personal experiences which might help others.

Support groups are not for every MS patient. Like me, some people are not disposed to hanging out in groups. However, the benefits offered by a support group greatly outweigh the discomfort of easing into the group at your own pace.

How does one find an MS support in their community?

First, ask your doctor. Many support groups meet in conference rooms in hospitals or clinics. Also, visit the web sites of the national MS-related organizations.

For example, the Multiple Sclerosis Association of America has a web page devoted to support groups at MSSA maintains a list of support groups which you can review online. MSAA also offer a toll free phone number for people searching for a Multiple Sclerosis support group: (800) 532-7667

For years, my wife has been active in an MS support group in our little community. In many ways her participation has been a good experience for her. And now I must end this post because I need to hurry and get ready to go to her MS support group’s annual Christmas party!

Caregiver Tip: If the MS patient for whom you care does not participate in an MS support group, discuss the possibility of attending. It’s a great way to find support and hear the stories of other MS patients.

Practical Tips

It’s normal for us to wonder if our own experiences are similar to others who find themselves in a similar situation. We expect to look around us and see people acting in certain patterns of behavior. We want to believe we all respond in a similar fashion to life’s hurdles. Of course, this isn’t true. And, in regards to Multiple Sclerosis, there are many responses to the disease.

What I find inspiring are the stories of people with Multiple Sclerosis who just won’t quit.

If you find yourself wondering about the stories of other people with MS, you’ll be interested in this YouTube video titled, “Living with Multiple Sclerosis”, about Dan Powell, an art professor at University of Oregon who is living with MS.

Online Caregiving Resource

We choose to face the future in one of two ways: prepared or unprepared. If you care for someone with a disease, daily needs and routines often require so much attention that preparation for the future sits on the back burner (bad pun alert).

In terms of planning, I think every caregiver should consider fire safety.

You ask, “What does fire safety have to do with being a caregiver?” Fire safety is especially important in a household where a family member moves slowly, may be easily confused in an emergency, requires a wheel chair, or is bed bound.

It’s important to prepare for the unexpected if you are a care giver. Unlike most people who might quickly run from a burning house, a person with MS may require extra assistance in a house fire or a nursing facility fire.

The National Fire Protection Association ( is “the authority on fire, electrical, and building safety.” In other words, if you want to learn about fire safety, is the place to start. In addition to more information than you thought there was to know about fires, the NFPA web site offers very helpful, free information about fire safety for caregivers and people with disabilities.

If you use the site’s menu and choose ‘Learning > Public Education > Safety Tips and Fact Sheets’, you will discover free information in categories such as appliances, campus and dorm fires, candles, carbon monoxide, children and fire, cooking, electrical safety, emergency preparedness, escape planning, fire extinguishers, fuels, high-rise buildings, nursing homes, people with disabilities, smoke alarms … you get the idea. It’s an impressive collection of free information for everyone.

If you are a caregiver, however, I suggest you start with these two sections:

People with Disabilities


Escape Planning

Caregiver Tip: Be prepared. Life is easier when you are prepared for the unexpected. If you are an MS Caregiver, make sure you have an emergency plan in case a fire (or other emergency) requires evacuation.

Practical Tips

I spent last week in Arizona at a leadership conference. It’s difficult to feel good about going out of town for a week because I worry I’ll be needed at home. Fortunately, cell phones, text messaging and email make it easy to communicate with my wife and daughters throughout the day. But there are things I do as a parent that my wife is no longer able to do. Someone else must fill in when I’m away.

For example, these days, I’m the family chauffeur because she’s not driving. While I prepared to leave town, scheduling dependable, trustworthy transportation was a concern. Out of the blue, a friend volunteered to pick my oldest daughter up each morning and take her to school and back home each day I was away.  Another friend volunteered to provide transportation to choir practice and church.

As it turned out, another friend filled in for the first volunteer when she had wrist surgery during the week!

Other friends make a point of telling me to remind my wife that she can call them for anything while I’m out of town. One friend tells me, “Anything, anytime.” And he means it.

What’s the message here? Friends are a blessing!

Unfortunately, caregivers may often find themselves isolated because their social lives are so constrained by the time and tasks required to provide care for a loved one. Friendship requires time and if you don’t have time to spare, it can be difficult to maintain friendships. In spite of this, it must be done.

Staying in touch with friends can be done as simply as making telephone calls or remembering birthdays with a card or letter. While you may not have time to prepare a full-course meal, perhaps you can take a short break and invite a friend over for coffee or hot tea and a stimulating conversation.

And when a friend bails you out, be willing to return the favor whenever you can. A nice “thank you” gift is appropriate, too … especially if the small gift is something your friend will value. For example, books (for readers) make great gifts.

You know your friends and they know your situation. They are aware of the additional stress you carry as a caregiver and they understand that even small gestures of friendship on your part are significant.

Caregiver Tip: Friends are a blessing. Bless your friends!

Practical Tips