Category: <span>Practical Tips</span>

Driving past a neighbor’s last week I saw him and his wife setting up Christmas decorations in their yard. The lights around the edge of the house had been put in place the week before. These decorations were the large figures that sit on the ground and are lit up at night.

Later that evening as I drove by again I saw their yard with the lights on and it was all that they should be – festive, pretty, and exciting for children. He and his wife decorated their yard together.

As I pulled into my driveway and looked at my house without Christmas lights or yard ornaments, the little voice that tries to help me feel better about what I’m unable to accomplish whispered, “you cannot do everything.”

And after several years, I have grown to accept that there are things that I must do alone if they are going to be done. There’s not a lot of joy in hanging Christmas decorations alone in the yard – so I don’t.

But my neighbor’s festive lights turned on a little Christmas melancholy for me.

A few days ago my wife remembered aloud that when our daughters were small she took them to the mall and pushed them through the Christmas-shopping crowds in their stroller. She looked forward to Christmas shopping with them when they were teens – three females having fun laughing through the mall together. That she can’t do with our girls what she once looked forward to doing now casts a shade of Christmas melancholy.

For many reasons, Christmas is the holiday that has the reputation of being an emotional minefield. Elvis sang, “Blue Christmas”, about the sadness of Christmas without a loved one. Newspapers often run a December article about holiday depression. The shorter days and less sunlight are related to Seasonal Affective Disorder aka S.A.D. (Has there ever been a less hopeful name for an emotional disorder?) SAD is a form of depression caused by seasonal changes and seems to be related to loss of sunshine.

Christmas is at the year’s end when most of us are looking back and evaluating the previous 12 months. If we’ve not accomplished what we intended we may feel regret. More powerfully, if we’ve lost a loved one, the holiday season is a time of remembering and consequently, sadness.

For many multiple sclerosis caregivers, Christmas seems an unnecessary complication.

Comfortable routines are changed because of festivities. In addition to the usual full load of making life happen well, additional responsibilities arise like decorating, preparing for parties, buying presents, wrapping presents, scheduling visits with family so that no one is neglected, cooking, finding money for presents. And of course, one has to have a good time doing all of this or they’re being a Scrooge!

If I ever do hide in the woods and become a hermit, Christmas is the holiday that will force it!

A friend has a two-word phrase he uses for times like this, “man cave”. He has one and he uses it.

What To Do When You Want to Hide in the Woods

You know as well as I do, MS caregivers cannot become hermits or hide in caves. So what’s a caregiver to do about holiday chaos? I’ll share what works for me.

1. Have reasonable expectations. Don’t expect your family to sing “The Hallelujah Chorus” together on Christmas morning if none of you can carry a tune. Don’t expect everyone to be happy with the present you give them. In fact, be reasonable! Expect that someone will not be pleased. When it happens, you’re prepared. If it doesn’t, you get the pleasant surprise.

Don’t expect a “perfect” anything. It’s not going to happen. The holidays are about people who are all imperfect.

2. Make certain you have holiday time for yourself. This one is difficult. It will feel selfish, but the only way you can be fully present for another is if you are fully present for yourself. You can only give another the parts of yourself that are available. If you do not occasionally find time to recreate your sense of self during the holidays, you’ll miss yourself and others will too!

3. Acknowledge emotions. You cannot avoid them. All of the anniversaries of life that occur each year tie us to the past. The holidays are an annual celebration with ties to previous years. You’ll remember family who are no longer with you, friends from whom you are separated, plans that have not been accomplished. All of these are real and present. Acknowledge the emotions you have about them. Emotional energy spent trying to avoid remembering can be better spent facing the memories and being thankful that loved ones and friends from the past were a part of who you have become.

4. Focus. Make choices about what is important. If you’ve ever used an old 35mm SLR camera which had depth-of-field preview focusing with a fast lens, you’ll quickly understand the image. Only certain things can truly be “in focus”. Everything outside of the field of focus is blurry. The photographer chooses what in the scene will be perfectly in focus. All else will be present, but out of focus.

As a caregiver, choose what you wish to focus on during the holidays. Everything else will be there, but at any given time, you can choose what you will make the object of your focus.

5. Remember the historically spiritual nature of the holiday season. Spirituality is, of course, a personal matter. So contemplate the meaning and value this season has held for you in the past.

In the middle of any current chaos, most of us have a bedrock of faith we rest upon – more or less. For me it is this, “‘Behold! The virgin will conceive in her womb and will bear a son, and they will call His name Emmanuel’ (which translated is, God with us).” I cannot explain what ‘God with us’ means because the experience lies deep on the bedrock of my faith in the realm of the ineffable.

But without doubt, I know the experience is real. When I’m running around trying to keep up the family traditions and do all that’s required to make sure all gets done, I know hidden beneath the chaos, there is one truth: Emmanuel, God with us.

Caring for Yourself MS Caregiving Practical Tips

In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913”. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.

Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”

The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, “Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands“.

Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.

Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.

I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!

Fortunately, the room I crashed was empty and no procedures were in progress!

I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”

Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

Caring for Yourself MS Diagnosis Practical Tips

Mark Twain said something about cats and hot stoves. “We should be careful to get out of an experience only the wisdom that is in it – and stop there; lest we be like the cat that sits down on a hot stove lid. She will never sit on a hot stove lid again – and that is well; but also she will never sit down on a cold one anymore.

If you care for someone with Multiple Sclerosis, you know life can be like a commercial kitchen with all the burners lit up. But, for sanity’s sake, its important to follow Twain’s advice and not expect every stove to be hot. Another saying (related to paranoia) is, “just because you worry about something, doesn’t mean it won’t happen.”

Me, I’m not a worrier by nature. But when I do find myself worrying about something, it’s usually not something I’m only imagining might happen. When I worry, it’s usually about things that have actually already happened, things that I know could happen again with similar or even worse consequences.

A good example occurred last week as I was driving home for lunch. The drive takes me just a few minutes, but on the way home, I thought about the fact that I had been in meetings all morning long and hadn’t talked with my wife. She had still been asleep when I left the house to drop the girls off at school. After dropping them off, I went to work and straight into meetings. We had not talked all morning! Then, an almost positive thought, “Of course, she’s alright.”

During the next few minutes as I drove home, I worked through a small list of things I worry about when we’ve not touched base frequently enough: What if she fell and knocked herself out? What if she were cutting veggies and cut herself? What if she stumbled in the yard walking Einstein? What if she got her medicines mixed up?

I’m fairly rational and I find that to be a useful characteristic for managing these little worries. First, I go to statistics. I think about probability and rationalize like this, “She’s fallen in the last 12 months, so the odds are against that.” Second, I go to what I know about her habits and behaviors, “She never cuts veggies in the morning,” or “she has her meds so well organized, she can’t mix them up.”

But even with those effective “anti-worry” techniques, I’m always so relieved to arrive home and find she’s fine, that I’m grateful for the grace and enjoy a longer “welcome home” hug. And, “besides”, I tell myself, “nothing ever happens if I worry about it!”

Caregivers Tip: It’s human nature to worry about things that might happen to a loved one. Think of little worries as reminders to fix what you can to prevent the thing you worry about from happening. If you worry about a fall in the shower, install secure, grab bars and antislip strips in the shower. And find your own brain games for dealing with little worries. Because you’re going to have them. Try thinking rationally, using probability, and considering what you know about your loved one’s habits and behaviors.

Caring for Yourself Practical Tips

As a caregiver, you know your family finances are probably different than those of some of your friends. You have medical expenses most of your friends do not have. Chances are good that your friends’ families are dual income families. Yours is probably not. Caregiving often brings its own unique set of financial burdens.

Helpful information is available if you wish to learn how you might better manage your financial burdens, especially as they are compounded by the current economy.

TAKE CARE! – Self Care for the Family Caregiver is the National Family Caregivers Association‘s quarterly newsletter written to provide members of NFCA with information, insight, support and knowledge. It’s a great little newsletter with well-written articles.

In the current issue (Winter 2009), there is extensive information for caregivers about managing family finances in the current economy. And it’s good information. Articles include “The Costs of Caregiving”, “Money-Saving Tips for Family Caregivers”, “Protect Yourself Against Financial Fraud”, and “Tax Tips for Family Caregivers”.

As a member of NFCA, I receive a paper copy of National Family Caregivers Association’s TAKE CARE! newsletter. Mine arrived in yesterday’s mail. I’ve just checked the NFCA web site and this quarter’s newsletter is already available online in the caregiving resource section of the NFCA’s web site.

Caregiver Tip:

If you’ve not yet discovered the National Family Caregivers Association, take a moment to visit their website at I think you’ll find it to be a solid source of helpful information.

MS Caregiving Online Caregiving Resource Practical Tips

My wife fell this past week.  When she fell, I was in an airplane between Phoenix and Dallas headed for a connecting flight on my way home from the last session of the Faith-based Leadership Institute.  She’s strong and independent, but a part of me imagines she wouldn’t have fallen had I been home.

She fell in a parking lot, scratched the tip of her nose and banged up her chin.  She scraped both hands catching herself.  It wasn’t her worst fall.  That one required stitches above her eye and she broke a finger.

Falls are unpredictable.  She’ll go months and months without falling, but then it happens.

There are several reasons she and other MS patients fall.  In fact, issues with walking are among the most common MS symptoms.

First, many people with MS have difficulty walking or maintaining their sense of balance.  This dizziness or “vertigo” is a common MS symptom.  Vertigo is often related to slow sensory input, inner ear problems or brainstem damage.

Second, the neurological damage caused by MS impacts the patient’s small and large motor skills.  This loss of motor skills called ataxia and it is a well-documented consequence of Multiple Sclerosis.  Related to falling, an MS patient who experiences vestibular ataxia will find it difficult to walk normally unless she can visually monitor her walking movements.  Literally, vestibular ataxia forces one to “watch how they walk”.

Third, neurological damage experienced by an MS patient can impact “proprioceptive capacity”.  (Why do medical words sound so strange? Who makes these things up?)  In short, proprioceptive capacity is about the brain knowing where the body is.

Proprioceptors are sensory receptors in your muscles, tendons, joints and in your inner ear.  They give your brain information about the motion and position of your body.  Of course, they do it by sending messages through nerves to the brain.  Nerves impaired by the effects of MS may be unable to transmit the messages as quickly as necessary.  The brain doesn’t know quickly enough exactly where all the parts of the body are in relation to the environment.

Another reason MS patients may fall is because of “Drop foot“, it’s the common phrase used to describe an MS patient’s inability to keep the toes of the foot from dropping.  This symptom of MS can easily cause one to stumble on flat surfaces or trip when stepping up on a curb.

The National Multiple Sclerosis Society has information about two devices designed to help patients with foot drop.  The link is:

It seems falls are bound to happen, so what does one do about falls?

In areas where falls are more likely, change the environment.  Securely install heavy duty grab bars in showers and tubs and beside toilets.  Use carpeting to help soften the fall.  Avoid creating obstacle courses in your home.  Maintain clear pathways.  If drop foot is a significant problem, explore the information from the National MS Society about the assistive devices.

I know exercise helps my wife.  She has an exercise machine she can sit or stand on and can go as slow or as fast as she wishes.

Here’s what I do to help prevent falls:  I act like we’re dating!  I hold her hand when we walk.  I open doors for her and hold them.  I slip my arm under hers if we go up or down steps.  I carry things for her without being asked.  (I let her carry things when she wishes, too … she can be rather independent!)

Caregiver Tip:

Falls are going to happen.  As a caregiver you can adjust the environment, but you cannot prevent every fall … especially if you’re not present.  If the MS patient you care for is your wife, treat her like you’re always on a date … it helps prevent falls and it’s good for your relationship!

Living with MS Practical Tips

Skilled doctors are busy people and tend to be very intelligent. Some of the mystique that surrounds doctors places them above most others on the social ladder. Not only that, but doctors tend to be “experts” in the very thing you need help with. It’s difficult for many people to think of doctors or talk with doctors as people.

And there are some doctors who actually encourage this problem. I imagine everyone knows of at least one example of a doctor who acts as if he believes he’s a god. “Here’s the answer. Don’t question me,” is their message. I know a plumber with the same attitude, though, so it’s not just doctors who may relish an “expert” role.

How does one talk with a doctor?

Here are a few important tips I’ve found to be useful in talking with my wife’s doctors.

First, remember this: doctors are just like other people. Behind their clinical white coat, they have the full range of human emotions to deal with – hope, sadness, stress, joy, frustration, etc. They have financial stresses and family stresses. Doctors are tired. They often feel impotent when they can’t effect a cure or relief. They live with hope and fear like all of us. And they participate in the medical struggles of a crowd of people. Being a doctor carries enormous ethical, financial and legal responsibilities. It’s a tough job.

Second, keep in mind (even though you’re paying for your time with the doctor) other patients are in the waiting room. Expect your doctor to be personable and informative, but don’t expect your doctor to talk with you about the weather or to be your “buddy, friend and pal”. Respect your doctor’s time.

Third, ask questions and ask for clarification when you need it. Good doctors want their patients to fully understand their treatment and disease. Don’t be afraid to ask, “can you explain that to me in everyday terms?”

Fourth, remember your doctor is not the only expert in the room. You know about you. You experience the side effect of your medications. You know where it hurts. You are the expert on you. Expect your doctor to know a whole lot more than you about treating MS, but your doctor should expect you to know more than him about how MS is treating you.

Fifth, laws regarding confidentiality of patient information may limit what a doctor can or will tell a caregiver. Without the patient’s permission, do not expect a doctor to talk with you in detail. If you are the patient, however, expect your doctor to share freely the information you request.

Sixth, do your own research. The internet is probably the best invention of our lifetimes. While much of the information available on the ‘net is questionable, never before have patients had access to so much good information about medicine. You can search the web for new research, medication information, reports about doctors and clinics, helpful tips for living with Multiple Sclerosis … there a world-wide web of information available.

Seventh, share research with your doctor when you believe it can be helpful to you. One way to initiate a conversation about treatment issues like this is to print the web page describing research you’ve found and share it with your doctor. Most will be thankful that you’ve shared information and it will give you both a reference point to start a conversation.

Of course, in addition to these, I’m sure you can think of other tips to make it easier to talk with a doctor. But I’ll end with this – if your doctor is too rude, too “clinical”, won’t talk, etc. you may want ot find a better doctor. There are far too many doctors who are caring, skilled, and informative to tolerate the rare MD who promotes the “god complex”.

Finally, a long relationship with a great doctor can make living with MS easier. If you’ve got a good patient-doctor relationship, appreciate it and thank your doctor!

Caregiver Tip: MS patients and caregivers must communicate with their doctors. There’s no better way to facilitate a good relationship and make living with MS easier.

Practical Tips

“I need more Leg Hours in a day!”

You’ve heard the term “man hours” before.  I heard my wife use a new term today.  It’s “leg hours”.

“Leg Hours” are the number of hours in a day that my wife’s legs work well enough for her that she feels stable and productive.  The number of good leg hours in a given day varies.  Some days she has many, some days she has few.

Practical Tips

A bad thing happened last night.

So I called the National Poison Control number 1-800-222-1222. (There is also an excellent poison control website!)

A calm, friendly voice answered, “Poison Control. How can I help you?

I, a little stressed, asked quickly, “My 30-pound Cocker Spaniel just swallowed one of my wife’s 5 mg Aricept pills. What do I do?”

A calm, friendly voice replied, “Sir, I don’t think that will be a problem. Let me check my resources.”

I heard keys clicking quickly on a keyboard. “Sir, that will not be a problem for your dog.”

With great relief, I replied, “Thank you. Thank you very much.”

I relaxed.

My dog, Einstein, slept well last night. And because of his Aricept-enhanced memory, he will never forget me chasing him like a crazy man and prying his jaws apart over that tiny little pill he swallowed.

1-800-222-1222 is the telephone number for every poison center in the United States. You may call this number 24 hours a day, 7 days a week and talk with a poison expert.

Caregiver’s Tip: Keep the Poison Control Number handy: 1-800-222-1222. Store it in your cell phone. You never know when (or why) you’ll need it.

Practical Tips

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

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

Shopping for a wheelchair is not like buying a new car.

I think my wife and I had psyched ourselves up about wheelchair shopping. Personally, I expected we would walk into a store and find rows of wheelchairs all shined up and waiting for a test spin around the room. It wasn’t to be.

My wife’s neurologist gave her prescriptions for a wheelchair and hand controls for her minivan following the last EMG performed a couple of weeks ago. We’ve both searched the Internet since then looking for all we can find about wheelchairs and hand controls. While buying a wheelchair is going to be an easier process than getting hand controls and a new drivers license, today was a disappointment.

The first store we visited had none out for display. A friendly lady went into a back room and returned pushing a flat black, 53 pound, folding behemoth. When asked about a lighter chair, she replied, “this is the lightest we carry.” She referred us to another medical supply store. We hopped in the minivan and found it.

The lady behind the desk in the second store seemed a little grumpy about answering questions until she learned my wife had a prescription for the wheelchair. Dollar signs flashed in her eyes. She immediately asked for our insurance information.

Instead of providing it, my wife explained we were shopping and asked if she could actually see some chairs. The desk-lady then asked a man behind the counter to go get one out of the back. He, too, returned with a black behemoth.

“It’s the smallest chair we have except for transport chairs,” he offered.

He explained that transport chairs must be pushed. They aren’t self-propelled. “But they are lighter,” he explained.

We could not find a wheelchair store designed for individual consumers. The stores cater to the hospital/nursing home market. The 50 pound chairs used in hospitals and nursing homes are solid and long-lasting, but they’re just too big for my wife to manage by herself.

We’re looking for what the industry calls an “ultra lightweight” folding model that will weigh about 20 pounds.  Also, a friend of mine who works as a Director of Nursing shared with me that the biggest factor in how comfortable a wheelchair is for a passenger is determined by the quality of the seat cushion. Another friend recommends solid tires instead of air-filled because the solid tires roll more easily.

Unless we get lucky, I imagine we’ll order the chair from an online dealer and cross our fingers that it will be just right for my wife. Unfortunately, most of the online dealers refuse returns except for those damaged in shipping.

Here’s my dream wheelchair shopping experience, (though I’m sure the market for personal wheelchairs is too small for this to work out for the dealer): it would be great to find a wheelchair store that has 50 or 60 different models on the floor so one can try them out.

I’d like to see how easily wheelchair A folds and unfolds, how rough wheelchair C rides compared to wheelchair B. Does wheelchair D look better in the black finish or in fire engine red? Can I get replacement parts for wheelchair E or must I send it in for repairs? What about accessories? “Can we get that model with detachable handles?” You get the idea.

Wheelchair shopping is not at all like I expected.

Caregiver Tip: Avoid psyching yourself up when you go shopping for a wheelchair. You’ll be disappointed. It’s not like buying a new car.

Practical Tips

If you care for a spouse or other family member with MS you already understand the impact medical expenses can have on your family budget. The financial cost of a chronic disease like Multiple Sclerosis is high and the financial drain is constant.

I was born in the early 60’s. I went to the ER while in college and left with 6 stitches above my eye. I had a physical checkup last year. One-time medical events like these generate one-time medical expenses.

In fact, anytime a healthy person receives medical care, it’s typically a one-time event with expenses that end after the procedure is paid for and the medicine is purchased. Even to have an appendix removed, there’s an end to the expenses after the surgeon, anesthetist, lab, facility and drug fees are paid.

While one time medical events can certainly whack your budget, they do it one time. You might not like it, but when it’s over, it is over.

MS is not like that. Not at all.

Multiple Sclerosis doesn’t give you the pleasure of making a final payment and writing, “paid in full” on the check’s memo line. MS is chronic and there is no cure. From the beginning, even before the diagnosis is made, the expenses begin adding up. MRIs are expensive, spinal taps aren’t cheap, co-pays for regular neurological check ups accumulate, and the cost of MS medications is unreal. In short, it would be easy to spend more than $20,000 a year on routine MS care.

If you’re an MS caregiver, here’s a sobering bit of news: almost half of U.S. bankruptcies are related to medical expenses.

A 2005 study led by Dr. David Himmelstein, an associate professor of medicine at Harvard Medical School, found that half of U.S. bankruptcies are caused by soaring medical bills. And bankruptcy specialists reported the study’s numbers seem valid.

George Cauthen, a lawyer at the Columbia-based law firm of Nelson Mullins Riley & Scarborough LLP, reported that he had reviewed every bankruptcy petition filed in South Carolina between 1982 and 1989. Medical bills accounted, “roughly, for about a third of all individual filings in South Carolina.” (Divorce accounted for another third.) And notice, this was in the 80’s before medical expenses began increasing at multiples of the national inflation rate.

Financial Thoughts for Caregivers

Given the sobering news about MS-related medical expenses and their impact on one’s financial life, what can one do? Here are a few tips:

1. Pay attention to your finances! Ignorance is not bliss when it comes to financial matters.

2. Save for a Rainy Day. You never know when you’ll need to access your emergency fund so you should take every opportunity to add to it.

3. Forget about the Joneses. It’s hard enough to keep up with all the details required to be a good caregiver. Give up on keeping up with the Joneses.

4. Pay down debt. This is almost an un-American concept, but in spite of what political leaders say about our “ownership society” and the recent history of loose lending, if you owe money for something, you don’t really own it.

5. Prioritize your expenditures. Most people make their house/rent payment, utility, savings and insurance payments first. You must have a place to live. Next, take care of food, medical and transportation expenses. Give to others. Finally, take care of everything else.

6. Economize. For example, if you love books, use your public library. In addition to books, most public libraries have a broad collection of movies on DVDs which you can borrow for free … just like books.

7. Ask for cash discounts when you make appointments for medical care. You might be surprised how much the cost of medical can be discounted for cash.

Caregiver Tip: MS is an expensive disease. Pay close attention to your financial situation and act with financial smarts.

Practical Tips

Pets are not for everyone. And if you’re not an “animal person” you should probably avoid getting a pet. Pets require attention because they can do so little for themselves. If you feel stretched already, you may not want the additional work a pet requires.

Now, with that disclaimer provided, I’ll begin to tell why a good pet can be a wonderful thing for a person with MS. First, I’ll tell about my dog, Einstein. With a name like that you can imagine I had high hopes for him. He doesn’t live up to the name. He’s not a show dog. And he’s bright enough, but he really excels in just a few things. Fortunately, what he excels in is the important stuff.

Einstein’s a two year old Cocker Spaniel we bought from a friend. We picked him out of the litter in my friend’s living room when the pups’ eyes were just barely open. It was a great way to choose a dog. My wife and daughters bonded with him before we ever brought him home.

He’s an excellent house dog with great bladder control. We live out of town on a couple of acres, but he’s never been off the leash outside so he stays clean and doesn’t bring in the smells he would if he ran free like most of the neighborhood dogs.

He’s a lazy dog, sleeps most of the time and isn’t hyperactive like some smaller dogs can be. In point of fact, he’s stretched out asleep on the floor here beside his/my chair. The only furniture he claims as his is my chair. He hops in it as soon as I get out of it. The chair sits beside the French doors and I think he likes the view it affords of the backyard. Lately, he’s had his eyes on my neighbor’s rooster and three hens which make regular appearances in my yard. I can say, “Einstein, chickens!” and he runs to the back doors barking and whining with excitement, tail and butt wagging as he looks out the windows for the crazy birds.

He’s a fun dog to own.

Here’s the main reason I think a good pet can be a wonderful thing for someone with MS: a good pet is pet-able. Few things are as calming to my wife as petting Einstein. I’ve read research about the benefits of pet ownership for improving blood pressure, extending the life span of heart attack patients, and soothing distressed geriatric patients. I see the best evidence of the good a pet offers when watching my wife relax while petting Einstein. Even if I didn’t like him, that alone would be enough to make it worth tolerating him.

Another benefit is that Einstein is entertaining. My wife and I both laugh watching the girls play with him. And laughter is good for the heart.

Caring for a pet requires that one exert effort beyond what they may wish. I know my wife spends more time outside with Einstein than she would without him. He tugs on the leash enough to exercise her arms. And while she doesn’t walk him around the neighborhood, she does walk him around the backyard each day.

There are two things I didn’t want to do a couple of years ago, but having done them, I’m glad I did. I painted our living room yellow and white and I bought my wife a dog. Sometimes I still miss the green walls and wood paneling, but I’ve not yet regretted having Einstein.

Caregiver Tip: A caution is in order. If caring for an MS patient requires all of your time or would be additional stress, you don’t need the extra burden of caring for a pet. However, many cities have pet therapy programs which may offer access to a well-trained pet without requiring that you care for it. A weekly visit to your house by a pet therapy animal may be just as soothing and beneficial.

Practical Tips

I took a flu shot earlier this week. Afterwards, my youngest daughter and I were talking about influenza, how it spreads and why vaccinations are important. She was uncharacteristically silent for a few moments after we finished the flu conversation. Then she asked me the question I’ve dreaded, “Daddy, will I get MS when I grow up?

I’ve dreaded the question not because it’s a difficult subject to discuss. We’ve talked about it before. I’m open with my daughters and tell them as much as they’re able to comprehend. I believe having information before one needs it makes life easier. During the years of my wife’s MS, she and I have both made sure they know one doesn’t “catch MS like someone catches a cold.” Talking about MS and heredity is easy.

But I’ve dreaded this day.

I’ve dreaded the day when she would ask the question of her own accord because it means she is worrying about MS for herself. As we mature we lose a little innocence day by day about the world around us. The same thing happens when a child grows up with a family member who has a chronic disease. One loses innocence through exposure.

I wish she were still MS-innocent. But she’s not. Fortunately, she’s not a worrier.

The statistics are available and easy to report. According to The Multiple Sclerosis Gateway (created by Bayer Schering Pharma), “Children where one parent has MS have about a 3% risk of developing MS later in life.” The risk is 20-40% greater than the risk for the general population who have no parents with MS. On the bright side, that means there’s a 97% chance my daughters will never have the disease.

Stats are easy to report. What isn’t easy is the small dread that will always be a part of her life. Even if she doesn’t spend time worrying about it, it’s there hiding in the dark of negative possibilities. It’s something I think of everyday for both my daughters.

How did I respond to her question?

“You don’t catch MS like you do a cold when someone sneezes on you. You know you won’t get it from hugging or kissing Mommy. It’s not like that. I can’t say you’ll never have MS, but I can say it’s something you don’t need to worry about. The chances are so small. There’s a very tiny possibility but it’s certainly not probable. The chances are very great that you never will.”

Do you worry about me getting MS?

“Yes. I do at times. But not nearly as much as I worry about other things all the time.”

“Like what?”

“I worry about things like how you’ll do on your math test next week. I worry if you’re ever going to clean your room. I worry if you will be a good driver when you’re older. I worry about those things a lot more than I worry about you or your sister getting MS.”

“I’ll be a good driver.”

“Yeah, I know, but will you ever clean your room?

I also know that she and I will have this conversation again the next time she becomes concerned about whether she’ll develop Multiple Sclerosis.

Caregiver Tip: Children who have family members with MS will wonder if they will get the disease. Be honest with children in a way that normalizes their concerns without giving them reason to worry. How to be honest while minimizing worry is something each parent must determine based on their knowledge of their child, his or her personality, and the child’s tendency to worry.

Practical Tips