Category: <span>Living with MS</span>

Published June 1, 2014 by

Childhood’s End

My youngest daughter recently graduated from high school and celebrated her 18th birthday. While I know this means she will soon enter college, spread her strong wings and fly into her own future, I am neither sad nor melancholy about childhood’s end in our family.

I am excited for her and the potential for good which her future holds! Like her older sister who launched a few years ago, she, too, is a remarkable young lady and she has incredible gifts to share with the world.

In addition to the excitement, there is relief. I have set aside a concern I’ve carried since my wife was first diagnosed: what if something happens to me before our girls are old enough and stable enough to fend for themselves?

Among my first worries when my wife was diagnosed was what would happen if I died or became disabled before our girls reached adulthood. Would my wife be able to care for them?

Now that both daughters have reached the age of majority, I can look back and know my worry was unfounded. My wife’s disease process has been slow enough, that even if something had happened to me, she would have been able to care for them.

In addition to the relief, here at childhood’s end I find myself considering the impact MS might have had on who our girls have become. I know they are different people than they would have been. I believe they are kinder and stronger.

My wife and I have never framed her MS as something she has. “We” have MS.

(If you are an MS patient, you may be thinking, “Yeah, right. You don’t know what you’re talking about. She has MS and you’re just a good support.” And you’re correct, she experiences the effects of the disease. She and I together experience the impact the disease. We chose to make it ours as a way of saying to each other: we’re in this together.)

I believe our decision to consider MS “ours” influenced our daughters in a positive way. I believe both are more compassionate than they may otherwise have been.

Seeing my wife reserve energy before a big event like a trip to the mall, laughing with her as she fumbles memories, knowing the first day of a vacation is down time while she recovers following a flight, and knowing she wants to do things she cannot because her legs refuse to cooperate has taught our girls that when they look at a person who seems to have it together they are not seeing the struggles the person may be overcoming each day to keep it together. Our girls know people are fragile and that mutual support is the only way to make it through this world.

I believe they are more independently minded than they might have been. They will think for themselves. They will not be quitters. They have seen an independently minded woman refuse to give up.

They have seen a woman determined to make good happen when it would have been easier to stop. They have watched a remarkable woman maintain a positive attitude in the face of daily struggles.

My daughters know the effort required for their mom to be present and help organize events at school. They’ve heard her speak in science classes about the impact of MS on the neurological system and the consequences that impact has on what an MS patient can do. My wife has been a powerful role model for our girls and their friends.

I’ll stop there. We’re at childhood’s end. My wife and I are looking forward to enjoying the just the two of us again!

Living with MS Reasons for Hope

adulthood childhood's end compassionate graduation

Published August 11, 2011 by

How Much Does Multiple Sclerosis Cost a Family?

MS costs a lot. If you’re an MS caregiver, you know this to be true. If you’re a casual reader, continue and learn about the predicament that faces Multiple Sclerosis patients and their families.

Health care is expensive. Health care is especially expensive in the United States. I don’t know all the reasons why this is true, but it seems to be related to profit, shareholders, insurance, law suits, regulations, etc. In other words, the system is so complex that I doubt anyone has the real answer to this question: Why do Multiple Sclerosis disease modifying drugs cost so much more in the US than in other countries?

I surely don’t know. I cannot imagine why MS medications cost 67% less in Britain, Canada and Germany. Same manufacturer. Same medication. Same disease. Very different cost.

In fact, Multiple Sclerosis is unusual among progressive diseases in that the medications are the most costly expense category. In the US, the cost of a patient’s MS medications can quickly reach $30,000 per year. But of course, that’s not the only cost associated with Multiple Sclerosis.

MS typically causes some form of disability. MS is a progressive neurological disease in which myelin is removed from neurons. This kills the neurons.

Because of disability, we must consider the cost of lost productivity at work or even the complete loss of one’s ability to work and secure an income. This impact is felt by family members. If an MS patient spouse spends $30,000 on medication and earns $30,000 at work, the family breaks even. In this simple example, we will assume the other spouse, the MS Caregiver wage earner, can support the family financially.

However, many MS patients are unable to work. In those cases, the family does not break even – not even close.

Between loss of employment ($30,000 in our example) and the cost of medication ($30,000 in the US), our sample family pays $60,000 for Multiple Sclerosis. That loss of $60,000 is unavailable to the family. It is an annual hole that must be filled.

Then there are other expenses directly related to medical care. First is inpatient hospital care. Fortunately, this is not a frequent event for most MS patients. Inpatient hospitalization seems to be required about once every five or six years. Average this out and this cost is probably close to $1000 per year. Second, in-home, non-medical care is an expense that many MS patients incur as their MS progresses. These costs vary based upon need and typically range from $6,000 to $12,000 per year.

Crunch all these numbers together and the annual cost of Multiple Sclerosis can easily top $65,000. Many families have insurance which covers some of these costs. But in our current economic environment, I imagine a number of families with an MS patient do not.

We’ve not even touched on impact being an MS caregiver can have on the caregiver’s career. I’ll save that one for a later date.

Living with MS

cost of multiple sclerosis

Published April 16, 2010 by

Medication Administration Records (MAR)s

Springtime in the South. I call it “Sneezin’ Season” because the pollen drives my allergies into hyperactive overdrive.

I take one sinus pill at 5:30 in the morning and a different medicine before I go to bed. These are the only medicines I take and they are different colors, different shapes, are in different packages and are dispensed differently. One is in a bottle, the other is sealed in individual packs. No way I could get them confused.

Last evening, I did.

And before I was through, I wasn’t sure if I had taken the proper nighttime medicine or had taken my morning medicine at night. I wasn’t even certain I had taken anything at all!

After scratching my head over what I had actually done, to avoid an overdose, I decided to take nothing (even though I thought I might not have had anything).

I was right. I really had taken nothing. I woke up sniffly and sneezy this morning. I simply confused myself into not taking my nighttime sinus medicine.

I told my wife about my self-inflicted confusion and she laughed. “Imagine how difficult it is to keep it straight when you take all the medicines I take!” She continued, “Sometimes I know I miss taking a medicine because I can’t remember if I’ve taken it or not. So I don’t because I don’t want to take too much. And I wind up taking nothing!”

I got no sympathy from her. Me talking to her about medication confusion is like talking to Noah about too much rain.

But she’s correct. It’s easy to lose track of what medicines one has taken. And the more there are to take, the more opportunities one has for confusion.

I’ve worked for more than 20 years at a children’s home. Our nurses monitor medication administration with documents called MARs (Medication Administration Records). Each time a child receives a medicine, he or she initials the MAR in the proper medicine/date/time location. It’s a record of exactly what was taken and when.

I have no doubt that a personalized Medication Administration Record book will be needed at my house in the future. But after last night, I’m not sure which of us will need it first!

Living with MS

mar medication medication administration medication administration record

Published March 28, 2010 by

Study: Hello Illness, Goodbye Marriage

Hello Cancer, Goodbye Marriage: A new study shows that men are more likely to ditch their sick spouses, should really be titled, “Hello Illness, Hello Marital Stress”.

The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness”. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”

While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.

Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.

I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.

And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment: http://www.newsweek.com/id/223079/output/comments

Caring for Yourself Living with MS MS Research

illness and marriage life-threatening illness multiple sclerosis and marriage partner with cancer partner with multiple sclerosis

Published December 13, 2009 by

Multiple Sclerosis Sucks

MultipleSclerosisSucks.com, subtitled, “How to Suffer from a Chronic and Incurable Disease without Appearing to be a Total Loser”, is a site MS caregivers should revisit from time to time.

You should probably go no more than a year between readings of “The MS Perspective Kit“. It offers a unique way to help one understand what living with Multiple Sclerosis is like. The lessons involve such things as rubber gloves, a woman’s high-heeled shoe, a roll of duct tape, and a large pot of coffee.

Through a healthy dose of humor, the author (who remains anonymous) does an excellent job of sharing the experience of an MS patient in terms that make the experience real for others.

Resource

MultipleSclerosisSucks.com

Living with MS MS Information Sources

incurable disease ms patient MS symptoms

Published November 23, 2009 by

Family Caregiver Alliance Publication on Multiple Sclerosis

Spend time on the Family Caregiver Alliance website at: http://www.caregiver.org

Of particular interest to Multiple Sclerosis caregivers will be the Family Caregiver Alliance Fact Sheet on Multiple Sclerosis. In addition to common information about MS, the fact sheet includes important information about cognitive problems caused by MS and their impact on caregivers.

For example, “About 50% of people with MS will develop some cognitive problems. Symptoms include a slowed ability to think, reason, concentrate or remember. Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities.”

The factsheet reports the most common cognitive problems include:

  • Memory recall, particularly remembering recent events.
  • Slowness in learning and processing new information.
  • Difficulty with reasoning, such as analyzing a situation, making a plan and follow through.
  • Poor judgment.
  • Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation.

While the FCA Factsheet on Multiple Sclerosis will interest MS caregivers, the entire web site of the Family Caregiver Alliance is an incredibly helpful resource for caregivers. Visit http://www.caregiver.com/ and learn more!

Living with MS MS Caregiving

cognitive problems MS fact sheet verbal ability

Published April 11, 2009 by

Random Symptomology

During the last weeks my wife’s legs have troubled her. She quit driving a few days ago. Walking is difficult.

I watched her in the kitchen from my chair in the living room as she literally had to think to slowly put one foot in front of the other to walk across the kitchen. (I need to write about how tough and tenacious she and other MS patients I know are in their fight to get things done. I’ve never met an MS patient who was a quitter.)

I told her yesterday that I think we need to visit her neurologist again before this leg problem gets too out of hand. It’s been a couple of years since she’s had an exacerbation so, on the average, it’s time for one. We talked and I mentioned I thought her doctor would prescribe the steroid IV for a few days. She said she dreaded it because of the effects that follow it for two or three weeks.

Easter is upon us so I took my daughters dress shopping today. As time goes by, either I’m getting better at it or they’re growing more patient with me. My youngest walked out of the dressing room in something I thought was too low on top and too high on the bottom. Just as I finished telling her to bend over and touch her toes, a friend walked up and said, “Rick, that is so 70’s. That’s a cute dress.” And that sealed the deal for my daughter. And when we returned home, my wife loved the little dress, too.

Anyway, our shopping done, we were getting in the minivan when my wife called.

“Guess what!” she exclaimed.

“I don’t know. What?” I asked, wondering why she sounded so excited.

“For the last two hours my legs have been fine! I’m walking without my cane!”

Just like that.

So what happened? Was it a random symptom? Is this just momentary relief or will her legs be fine now? Does she need to see the neurologist? I don’t know. I can’t answer any of these questions. I do know she seems more steady this evening and while she couldn’t walk around the block if she had to, I can tell she is walking much better.

This random symptomology is one of the really weird things about Multiple Sclerosis. Unlike symptoms of other things, MS symptoms often seem random. I prefer a more orderly, Newtonian symptomology where symptoms are the consequence of action. Hit your thumb with a hammer and you feel pain. Eat too much spicy food and you experience indigestion. MS isn’t like that.

Living with MS

MS symptoms multiple sclerosis random symptoms

Published December 8, 2008 by

Falling and Multiple Sclerosis Patients

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: http://www.nationalmssociety.org/download.aspx?id=1363

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

dizziness drop foot falls neurological damage proprioceptive capacity proprioceptors vertigo

Published July 27, 2008 by

Tips for Traveling and Multiple Sclerosis

We’ve enjoyed a fair amount of family travel this Summer.  Most trips were by plane, but the best was a road trip across the South.  Now that this Summer of travel is nearly over, I’ll share some tips I’ve picked up along the way about traveling and Multiple Sclerosis.

1.  Take your medications and pack them for easy access.  For air travel, they must be in their original containers provided by your pharmacist.  Don’t be surprised if the TSA uses a machine to test your pills to verify they are what the label says they are.  It looked like an odd procedure in which a gloved TSA staff wipes a pill with a swap and inserts the swap with long tweezers into a machine.  I can only imagine the TSA must believe one can pack enough explosives in an Aricept pill to take down a plane.  That, or there’s concern that dope dealers are transporting illegal drugs in Provigil bottles.  For whatever reason it is performed, the pill check process slowed passage just a bit through TSA check points.

2.  The Transportation Security Administration TSA offers this information for travelers with disabilities and special needs: http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1567.shtm

3.  Be prepared for heat.  On road trips, take an ice chest with ice and bottled water.  Heat exacerbates fatigue.  If a fan belt breaks or you have a flat tire, you’ll want a way to keep cool.  One of the best methods of cooling quickly is the use of cooling bandanas.  For emergencies, we keep a pre-soaked cooling bandana and a freezer pack in a gallon zip-lock freezer bag in the top of the ice chest.  It’s ready immediately if needed.

4.  Consider using a national chain pharmacy to ease your acquisition of medications in case you forget your meds or require a prescription refill while traveling.

5.  If walking is problematic, as soon as you can, visit your airline’s website and use the online interface or call the phone number provided to arrange for a wheelchair or other assistance between connecting flights.  You can also request special seating with additional leg room for example.

6.  If you use a cane, consider taking a folding cane with you on your travels.  It’s much easier to stow when you’re seated.

7.  Allow the people with whom you travel to assist you when they offer.  You’ve got nothing to prove.

8.  I believe the air traffic control folks in some airports must be having a contest to see how far they can make passengers run between connecting flights.  If your schedule permits, allow a little extra time between connecting flights so you’re not rushed from one gate to the next.

9.  Take advantage of the assistance offered at museums or other sites.  The Martin Luther King Jr National Historic Site in Atlanta is maintained by the National Park Service.  The park service staff will gladly offer you a choice of wheelchairs in exchange for your drivers license.

10.  Enjoy your travel.  Don’t let anyone talk you out of doing what you want to do or seeing what you want to see.  I was happy to follow my wife slowly up and down the small, winding steps to the top of the lighthouse at Marblehead.  And she walked down the 8 flights of steps of the Inside CNN tour in Atlanta.

Be careful that you don’t allow the symptoms of Multiple Sclerosis to prevent you from traveling when you have opportunity. Accommodations are available to make travel much easier than ever before.

Living with MS

multiple sclerosis travel travel with disabilities TSA medications

Published June 8, 2008 by

Multiple Sclerosis, Wheelchairs and Lifespan

My wife made a comment last week that I’ve thought about a lot since she said it. It was said in passing in the middle of a conversation that I cannot remember (apparently, my wife’s not the only person in our family with poor memory). In this case, though, I think I fail to remember the rest of the conversation because her comment stunned me.

“I don’t think I’ll live a long life.”

I knew if I talked to her about it then, I would become too assertive about how wrong I thought the statement was and that she had no right to think that way. (Actually, she has the right to think any way she wishes … and usually does … even if I don’t like it!)

I knew, though, I wouldn’t be able to listen to what she was really saying. So, a week later, yesterday morning, I asked her about her comment.

“I imagine you said it because you have MS, but having MS doesn’t mean you’ll have a shorter life. Are you thinking you’ll have a shorter life because of something you’ve read? Or is it just a hunch?”

She’s a realist and a pragmatist. “I need the cane to walk around on and it’s getting worse. I’m headed for a wheelchair in my future and I don’t think people confined to wheelchairs live as long,” she explained simply.

I know her gait is worsening. And I won’t be surprised when she requires a wheelchair. But I’m not ready to believe it will shorten her life. I said, “Unless you’ve read some significant study, I wouldn’t assume being confined to a wheelchair automatically shortens one’s life.”

She countered, “people in wheelchairs get less exercise, hearts grow weak, muscles grow weak. I don’t think they live as long.”

Ever the optimist, I responded, “Yes, perhaps that could be true, but I know people confined to wheelchairs who are in great shape. They even make racing wheelchairs for athletes!”

Her eyes said, “but I’m not an athlete.” She looked at me like I wasn’t understanding her. The fact is, I didn’t want to understand. I didn’t want to think that being confined to a wheelchair will shorten her life.

It’s obvious neither of us knew the real impact a wheelchair has on lifespan. So it was time for a little online research.

I’ll share what I’ve found about life span and wheelchair confinement. Interestingly, I’ve not been able to find a single study of the impact of wheelchair confinement on lifespan for MS patients.

So I’m approaching it from a different angle. I’ll start with the basic question, “Is MS fatal?”

MS is not a fatal disease, according to the National MS Society. “Researchers found that over the past 25 years, life expectancy for people with MS has increased.”

A more complete answer seems to be available on the Medscape Today website in “Aging With Multiple Sclerosis“, an article published in the Journal of Neuroscience Nursing (J Neurosci Nurs 36(5):245-251,259, 2004. © 2004 American Association of Neuroscience Nurses)

The authors write, “The disease (Multiple Sclerosis) causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).”

The authors did not separate the MS patient population into two groups, Those in Wheelchairs vs. Those Without Wheelchairs. The statistics include all MS patients.

So I’ve found an answer to my wife’s statement that she’ll not live a long life. I think she will live long.

Here’s why: 85%-90% of MS patients can expect to live as long as their age peers. (I don’t think I’m doing any funny math here, but the following works for me). Statistically, the bulk of MS patients will be found toward the average (inside the bell of the bell-shaped curve for those of you who like statistics and graphs). The 10%-15% of MS patients who do not live as long as their age peers are in the population that are outliers, they are a standard deviation or two away from the norm.

Based on her symptoms to date I believe she is having an “average” experience of MS. So, to extrapolate that into the future, I think she’ll find herself well within the 85% to 90% who live as long as their age peers … with or without a wheelchair.

Living with MS Reasons for Hope

life expectancy lifespan multiple sclerosis wheelchair