Rocky Mountain MS Center

Multiple Sclerosis Clinical Trails on ClinicalTrials.gov - A service of the U.S. National Institutes of Health

UCSF Multiple Sclerosis Center

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.

“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 when 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?”

According to the National MS Society the answer is: “No, MS is not a fatal disease, except in rare cases. People who live with MS can be expected to have a normal or near-normal life expectancy.”

I like that answer except for the “except in rare cases” part. But from all I’ve read, those rare cases are indeed rare and consist primarily of MS patients in whom the neurological damage is done to areas of the brain and nervous system which control breathing or regulate heart beat.

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.

My schedule is usually more forgiving than it has been lately. I work as a Director of Information Services. We’re building a private, statewide network and implementing new proxy servers, firewalls, switches and network filters. To make it happen, I’ve worked longer hours than usual this past month and all night a night or two each week.

Several years ago I promised myself (and continue to promise myself) that their mom’s Multiple Sclerosis will not interfere with my daughter’s childhood and adolescent experiences. My youngest plays softball two or three times a week, my oldest sings in the high school choir, all state choir, and church choir. They travel. They have friends spend the night. They go to parties, movies, etc. In other words, they’re having a normal adolescent experience.

In the last week at home, I’ve grilled for guests, cleaned, chauffeured, delivered, mowed, done my state taxes, transported, clipped hedges, been a dugout coach and been to doctor’s offices. I’ve cut a wall out of the hallway and built a linen closet. I could go on, but it would only be to support the fact that I’ve been too busy to have time for myself lately. While mowing this morning, I stopped the mower and stretched out on the lawn in the shade of an Elm tree to rest for a few moments. The grass was cool, the breeze blew up the hill, I almost fell asleep. It was the first, pure “me” time I’ve had lately. It was only for a few minutes, but it felt good.

Few people with responsibilities for others have all the time they wish for themselves. It’s part of the deal that comes with responsibility. And the tips below apply to all caregivers: young moms, family caregivers, hospice workers, anyone who care for another.

Here are a few tips to help you make time for yourself:

1. Understand that making time for yourself is necessary

As a caregiver, there will always be periods of time where you find yourself overwhelmed by the tasks set before you. And for brief periods, it is possible to do it all — for brief periods.

But you can’t do it all, all the time, without making time for yourself. It’s impossible.

2. Making time for yourself requires effort

It won’t just happen, so don’t expect. You must make time for yourself. It requires effort. Perhaps you will schedule a set hour each day and protect it with all your might. Or maybe you’ll arrange an afternoon off each week. However you do it, it will require effort to schedule and protect your own time.

3. Making time for yourself may seem selfish.

A caregiver can be so busy caring for another that not caring the full 24 hours a day seems wrong. It’s not. Don’t let yourself feel guilty.

4. Determine what your real “Must Do’s” are.

Life is filled with things we think we must do. Many of these activities are real “Must Do’s”. Bad things will happen if they are not done. For example, I must deliver my oldest child to school in the mornings. I must shop for groceries. I must pick up prescription refills. You know what the real “Must Do’s” are in your life.

Some of the “Must Do’s”, though, may not be real “Must Do’s”. They may only be things that would be nice to accomplish. For these, think clearly about them and then call them what they are, “Good To Do’s”. It would be good to mow the hill this afternoon. It would be good to attend the neighborhood ice cream social. It would be good to read a chapter in the new book. It would be good to do a lot of things that you don’t have time for.

First, do the “Must Do’s” in your life. Then, if you have time to spare, knock out some of the “Good To Do’s”. Or do just one of them.

5. Avoid excessive volunteering.

Notice the word “excessive”. I am a strong believer in the value of volunteerism. Many organizations would be unable to accomplish their mission if it were not for people who volunteer to help. The key word here is “excessive”. And only you can determine at any point in your life what excessive means to you.

However, if you don’t have time to take care of your “Must Do’s”, you certainly won’t have time to volunteer for additional tasks. If you can get your “Must Do’s” done and can make a volunteer task one of your “Good To Do’s” then go for it.

It’s helpful when you volunteer to first set the boundaries around your time. “I can volunteer for 1 hour a week, but no more.” If you set the boundary up front, you won’t feel guilty about setting it later when you’re overwhelmed. Volunteer organizations (with the best intentions) can be incredible time suckers. Your time boundaries are important.

6. Take time off.

Most employers offer vacation leave as an employee benefit. They do it because they know employees are better able to do their tasks if they are refreshed and if they can re-create themselves from time to time.

Caregivers must take advantage of this bit of wisdom from the world of work. Take time off. Make arrangements for friends or other family members to fill in on your “Must Do’s”. Set aside your “Good To Do’s” and take time off.

Make it your time. Do what you need to do to pull yourself back together.

As I wrote in my very first post, put on your own oxygen mask first. If you passout because you don’t take care of yourself, you’ll never be able to care for another.

Caregiver Tip: Make time for yourself.

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.

So here’s the logical question for readers to ask when they read MSCaregiver.com, “Who pays for this blog, MSCaregiver.com?”  In fact, this is a question you must ask of any information source, “Who is paying to present this information?  Who funds this message?”

The quick answer is for MSCaregiver.com is, “I am.  I’m Rick Wheat.  My wife has Multiple Sclerosis and I’m an MS caregiver.”  The financial costs of maintaining this blog (and most blogs) are minimal … only $1 per month for hosting and a few more bucks a year for the domain name.

Why is it important for readers to know who pays for MSCaregiver.com?  Because you need to know that no one is paying for advertising here and no one is paying me to write content.  I write what I wish, about what I think may be helpful, and about what I’ve found to be helpful to me and my wife.  I write it because I want to offer support to others who care for a person with Multiple Sclerosis.

A nice thing about not being paid for my efforts here is that I can write when I wish.  Follow MSCaregiver.com long enough and you’ll notice that sometimes I write frequently, other times I take frequent breaks.

Now that you know this blog is not a commercial endeavor, but about my own personal experiences, I hope you’ll share what works for you.  If you have something to offer, sign up and share your comments!

Driving home for lunch yesterday I caught just enough of Paul Harvey’s broadcast to hear something about Prozac, Multiple Sclerosis and reduced number of lesions on MRIs. I mentioned it to my wife when I arrived home and then searched the web for more information. (I started at PaulHarvey.com, but didn’t have time to relisten to the broadcast. It would be great if the broadcast transcripts were available on Mr. Harvey’s website - and maybe they are, but I couldn’t find them.)

Here’s what I found:

In Fluoxetine Show Promise in Multiple Sclerosis on the Medscape.com web site, the author describes the results of a small study which were presented at ECTRIMS 2007: 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis. The article is dated October 16, 2007, so we’re not dealing with “new” news.

I think the reason Paul Harvey’s broadcast mentioned it is because the study is about to be printed in Journal of Neurology, Neurosurgery and Psychiatry.

The study conducted by Jop P. Mostert, MD, and his colleagues at the University of Groningen in the Netherlands, showed a reduction in new gadolinium-enhancing lesions in the study’s patients with relapsing-remitting or relapsing secondary progressive MS who received Fluoxetine (the generic name for Prozac).

Read the article for the study’s details or search the web for Prozac + “Multiple Sclerosis” for additional information.

Here are some of the reason I created the “Reasons for Hope” category for this article:

1. This study was not funded by any pharmaceutical firm. Funding wasn’t an influence.
2. Fluoxetine/Prozac has been around for a long time and is generally well-tolerated (unlike other MS treatments).
3. This isn’t a “new” new thing - Dr. Mostert’s report mentioned that, as early as 1991, psychiatrists were reporting that fluoxetine/Prozac was having a positive effect on MS patients.
4. A list of Multiple Sclerosis Drug Treatments indicates the medication is already prescribed to MS patients for “depression without anxiety“.  And, as mentioned in the study report, psychiatrists were reporting positive effects of Prozac on MS as early as 1991.

Remember, I’m not offering (nor am I qualified to offer) medical advice, merely reporting what I’ve heard on the radio and read of Mostert’s study. Talk about this with your neurologist.

Caregiver Tip: Do your own research on the impact of Prozac on MS and talk to your doctor. It may be something worth considering.

“Eye test peers into heat-related multiple sclerosis symptoms” on the University of Texas Southwestern Medical Center web site describes the experiment which was published in the March 25, 2008 issue of Neurology.

Dr. Frohman serves as the Director of the Multiple Sclerosis Clinical Center at UT Southwestern.

Visit http://www.utsouthwestern.org/neurosciences to learn more about
UT Southwestern’s clinical services in neurosciences.

Information about the Multiple Sclerosis program at UT Southwestern in Dallas, Texas is available at:
http://www.utsouthwestern.edu/patientcare/medicalservices/neuro/ms.html

From the MS Program’s web page: “Recognized as a world leader in the research and treatment of multiple sclerosis, the Multiple Sclerosis Program at UT Southwestern Medical Center serves more than 3,900 patients with an all-encompassing program equipped to handle the wide range of symptoms that normally makes the disease difficult to treat. The overriding philosophy of the clinical care mission is to treat the whole patient with a team approach.”

As we were walking up the hill from the field she stopped, turned, and pointed to her bat bag she had left behind the backstop.  She asked, “Daddy, will you go get my bag?”

I stopped and replied, “No, Sweetie.  You’re the one playing ball, you get your bag.  I’ll wait for you.”

Then, when we got to the truck, she took off her very muddy shoes and dropped them on the parking lot.

“I’m too tired to pick them up and put them in the back of the truck,” she complained when she saw the question on my face.

“Toughen up, Girl,” I replied, “you can do it.”

“Anyone who is tough enough to get them muddy, is tough enough to pick up shoes and put them in the back of the truck.”

She returned to her shoes, picked them up and tossed the over the tail gate into the back of the truck.

I want my daughters to be independent, tough and responsible for their world.  When they start something, I expect them to finish it.  Even when it takes longer because they’re tired.

I’ve thought about last night’s exit from the ball field today.  I treat my healthy daughters very differently than I treat my wife who has Multiple Sclerosis.

If my wife were playing softball, I’d carry her bat bag for her and I’d pick up her shoes for her.  She wouldn’t even need to ask!

But, why?  She’s a tough lady.  And I want my wife to be just as strong and independent as my daughters.

I like to think it’s partly because I’m a southern gentleman reared to hold doors and umbrellas; taught to walk by the curb on sidewalks, eager to carry packages for ladies, with a strong desire to treat all females with respect.  Mostly, though, I treat my wife differently because I want to make her life easier.

MS isn’t easy to live with.  If a person lives with MS, they’re obviously “tough”.  Multiple Sclerosis is a heavy burden.  So, if I can ease my wife’s fatigue by carrying something for her, I’ll do it gladly.  If cleaning the kitchen gives her more “leg hours” to enjoy for herself, I clean the kitchen and wash the dishes.

The list of things I’ll do for my wife without being asked is very long compared to what I’ll do for my daughters.  They have the strength to do it for themselves.  “Don’t be a quitter.  Be a go-getter!” I tell them.  To my wife I ask, “can I help you with that?”

Sometimes I wonder, though.  How do I know I’m drawing the line in the right place.  What if I’m being “too” helpful?  What if by making life a little easier for her, I’m actually preventing her from being as tough as she really is?  What if being helpful so often really isn’t helpful?

Would she walk further?  Could she carry more groceries?  I think she would and could.  Would it be good for her?  I don’t know.  I do know she would be much more fatigued and stressed.  Would that be good?  No.

And I know if one of my daughters had MS such that she were so easily fatigued, I wouldn’t make her carry her bat bag if she had worn herself out playing ball.  I’d carry it for her.

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out.  Ask the person for whom you care if you’re doing too much.

And remember, what you’re needed for today may not be what you’re needed for tomorrow.  The symptoms caused by Multiple Sclerosis vary over time.  You may need to do the grocery shopping for several months in a row and then be surprised when you’re told, “I’ll do the shopping today.”

When that happens, let your loved one do it.  Grab a cup of coffee and a good book.  Enjoy the moment!

 Caregiver Tip:  Talk with the person for whom you care about what help is needed and remember that the need will change over time.

You can find the book online, but save some money and pick it up at your local library.  You’ll be glad you did!

Caregiver Tip:  Read.  There is new information about MS and being a caregiver.  Take advantage of it every chance you can.

My oldest daughter participated in the conversation saying, “If Daddy dies early, I think Mom should remarry so she’ll have someone to take care of her.”  I agree.  And while I hope I outlive her, if I don’t, I want her to remarry (but only if she finds a man who loves her and my girls as I do).  There are a lot of conclusions one can draw from my daughter’s comment, but the one I’m thinking of today is that I should really take better care of myself!  (The conversation also points out the importance of family caregivers having enough life insurance to ensure care for an MS patient who remains.)

Now when it comes to longevity, I do have several pluses.  I have a low stress job.  I don’t drink, smoke, do drugs or overeat.  I have no known physical ailments.  My checkups are always good.  I’m a safe driver, wear my seatbelt and do most of my driving in low risk areas.  I don’t play with fire, skydive or do race cars.  I come from a family with good longevity genes.  I have good blood pressure and avoid too much salt.  I’m only a few pounds over my ideal weight.

One significant minus concerns me, though.  I don’t exercise regularly.  In fact, the main reason I push a lawn mower over my 2 acres of grass in the Summer instead of riding a tractor is that mowing is good exercise.  Unfortunately, that’s about all the exercise I get.  I walk around the block a few times a month with my daughters, but I’m sure that’s not enough to be considered regular exercise.

I’m not too old to exercise.  I have a friend of a similar age who plays hours of basketball each Saturday night … often until midnight!  Another friend works out with weights three times a week during lunch.

Why don’t I exercise?  Probably for the same reason many caregivers fail to exercise:  it requires an investment of time and time is always in short supply.  That sounds like a good excuse, but I know it’s not.  I have no good excuse.  I should buy a bike and hit the road.  Maybe start running.  Something.

To be rational, it does no good to wish for a long life if one doesn’t do everything required to live long.  I must exercise regularly.

Caregivers Tip:  Exercise.  It’s good for you and your increased health will be good for your loved ones.

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.