By Lori Kostich MS, CCC-SLP
Mandell Center

I am not a Physical Therapist. I am not a Fitness Trainer.  I do, however, spend a great deal of time working with my patients on reasoning out solutions to problems.  The issue of “exercise” comes up. When to exercise, how much to exercise, what is appropriate exercise and if you can’t exercise the way you used to does that mean you will never exercise again?

So what is exercise to you? Are you someone who likes to go to the gym? Are you someone who would rather be outside? Stop, think this through.  Can you still do that? Great.  Do you need to scale down the intensity of the workout so fatigue doesn’t become unmanageable? That’s great, it’s different- but not worse- and you are staying active.

What if going to the gym is no longer manageable? What kind of exercise can you do around the house? I am not at your house- so you need to think.

Here are some things my patients do.

1. When you go get the mail, walk a few laps around the driveway. Remember to take your cane or walker if you need it.  You will be able to walk a little further and easier with the device than without it.
2. When you stand up or sit down, do it without pushing off with your hands
3. Consider, when you wash floors, or clean the tub, if the kneeling to standing makes you out of breath, that is a little bit of exercise.
4. Lifting laundry and carrying it around is exercise
5. Stretching exercises
6. Breathing exercises

People think that because they are not doing those exercise programs on TV, going to the gym or swimming laps that they are not exercising.  But stop, think. Exercise can be anything.  What is realistic exercise for you?

By Lori Kostich MS, CCC-SLP
Mandell Center

Staying Active. What does that mean? Staying Active.

To some, maybe to many, staying active could mean going to the gym and running or lifting weights 5 days a week.  It could mean coaching the kid’s soccer team.  It could mean biking five miles every morning before work.  It could.

To some, staying active could mean walking the dogs a mile every day.  It could mean keeping up with the kids, all day, every day. It could mean doing that extreme exercise program that’s advertised at all hour of the night.

But, does staying active have to mean exercises that require walking and balance? Exercises that require sweating? Does it have to mean that?  To my patients, staying active is volunteering at a youth center one day a week, three short grocery trips spread out over the week and two daytime yoga classes- followed by helping the spouse and kids around the house as much as possible. To others, staying active means pacing oneself over the day, so fatigue never really sets in.  This usually means short bursts of activity followed by rest and/or powernaps. It can also mean shopping, cleaning bill paying in the morning, then sleeping for two hours to have the energy to manage the kids when they arrive home. 

What does staying active mean to you?

I met a man recently who was a performance athlete.  His sport was cycling.  As I listened to him talk about training and extreme exercise routines, I remember thinking that I could envision nothing less pleasant. However, in all honesty, I would happily hike up the side of a mountain every day (notice I said up, I really dislike coming down). I can also spend hours swimming and playing around in any body of water (salt or fresh) that happens to be in the area. I will swim past the point where my fingers and toes prune. I love walking my dogs. When my kids were younger, I really enjoyed kicking a soccer ball around with them.

It is important that all of you with Multiple Sclerosis stay active.  But, this is a challenge given some of the changes that are happening with your muscles, with your ability to breathe well, changes in your vision, and with your level of fatigue. And you have to be careful, too much activity can lead to that level of fatigue that will knock you flat for three days.

So let’s go back to this- It’s OK to do things differently now. 
Different doesn’t mean better or worse. 
It just means different.

Staying Active- Setting Realistic Goals

“I want to go back to running half marathons”
“I am never going to use a cane”
“I am not going to take the medications [that will reduce tone] because they make me feel funny”
“I don’t have time to stretch, I have to drive the kids everywhere, make dinner, clean the house and then I ‘m too tired.  It’s just what I have to do right now”
“Everybody trips once in a while”

Do any of these statements sound like you?

There’s nothing wrong with any of them.  Depending on the person, and that person’s current level of function, progression of the disease process, motivation, all of these statements could come true.  Or these statements could indicate that a person is being unrealistic.  You are all so different.  The concept that I am going to try to convey is you all need to have goals, it is good to have goals, and goals give us all something to work towards.  But, there are achievable goals, and then there are those goals that are not realistic given a person’s current level of function, progression of disease process and motivation.

As a therapist, I write goals as part of my treatment plan for all of my patients.  I was trained that all goals have 3 parts. First, there is the behavior – what are you going to do, and it has to be concrete and measurable.  Second, there is what we call accuracy, how often is this behavior going to happen accurately.  Third there are modifiers- is this behavior going to be completed independently or with help.

So let’s work through a few goal setting activities.

It’s going to be a beautiful day tomorrow. You want to go outside weed your garden and flower beds.  The Weather Person says it’s going to be 80 degrees by noon.  You have to buy dinner. And you have to pick up the dry cleaning. You have to get the kids off to school. You have to help them with homework after school.

So you make this to do list:          
Go outside
Weed
Dry cleaning
Shop

To me, as a therapist, these are not measurable goals. What does go outside mean? Is there a time component? Is this go outside between errands or dedicated time in a park?  “Weeding” is one of those open ended tasks that has no end.  Shopping is also one of those open ended tasks. So, this is a vague list, open to interpretation. And at the end of the day, even though you touched on all of these tasks, you may not feel like you “completed” all of them.

Try this to do list:             

-Go out into the back yard after the kids go to school and read for one hour (concrete, achievable time).
-Weed the flower beds from the corner of the house to the back door before noon (concrete, achievable distance and time).
-Get the air conditioner going in the car (concrete, achievable accommodation)
-Pick up the dry cleaning (concrete, achievable task)
-Go to the air conditioned grocery store and buy pasta, sauce, green beans and garlic bread (short, measurable grocery list)
-Come home (achievable task)
-Nap for 1 hour – set alarm (concrete, achievable task-definitely)
-Empty the kids backpacks after school, sit at the dining room table with them until homework is managed (challenging, but achievable task)

The difference between the lists is a level of forethought and planning, and the second list is very do-able. You can check things off.  All the tasks on the second list have a beginning and an end.  One of the biggest challenges my patients have with setting successful day to day goals is being over ambitious, and being vague. Maybe ten years ago they could “wing” a lot of stuff, and end the day feeling that everything got done.  But once the Multiple Sclerosis begins to affect mobility, ability to stay on task and recall of what to do next, “winging” things becomes much harder.


So here’s another to-do item I hear often: Today I am going to clean house

Well, that goal has a concrete time on it. But, the task is vague.  What does clean the house mean to you.  I bet it means something different to every one of you reading this.  And it’s an endless task. So stop, think.  If you were going to clean your house, where would you start? I tend to start in the rooms where I spend the most time.  When my husband cleans, he starts in the kitchen, always.

My "to do" list would be:                                                    

First, dust the living room (achievable- has a beginning and an end)
Second, vacuum the living room (achievable- has a beginning and an end)
Third, clean off the dining room table (achievable- has a beginning and an end)
Fourth, vacuum the dining room floor (achievable- has a beginning and an end)

There’s a sequence to the tasks, an order to the tasks.  They are concrete and achievable. When I ‘m done with these, I make plans for cleaning the bathroom on another day.  

My next blog will be titled "Staying Active - What's Appropriate Exercise for you?

Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research

As we move into the New Year, we are all making resolutions.  Some of them (maybe many of them) are straightforward...lose 10 pounds, be more organized at work, or keep the house clean.  Most of us strive to do something “better”, to “improve” or to try something new.

But what happens when that falls through? And let’s be honest, by February, many of the goals we made are beginning to slip (I did not say all...congratulations in advance to all of you who will still be sticking to your resolutions in February) and then feelings of frustration can begin to set in. 

So, since it is early in the year (and early enough to adjust that resolution), how about this resolution - taking care of yourself, first and foremost.  So, what does that mean?  It means something different to every person reading this.  Every person with MS has unique life circumstances, needs, desires, dreams and goals. Every person with MS wants the symptoms of MS to interfere with their lives as little as possible.  But, let’s be realistic, those symptoms are there, changes are happening. Taking care of yourself may not mean doing things “better”, but rather doing things “differently”. 

For example, is everyone reading this 100% adherent to their medication schedule? Does everyone reading this plan the day to try to get ahead of issues before they become BIG issues?  Does everyone go to bed every night feeling like something was accomplished that day- that something got done? Does everyone reading this practice good energy conservation strategies, resting before you get tired, good body mechanics, so that you have energy to be with your family and friends in the evenings?  Can you think of ways to adjust work habits, or routines at home? Not to be better, but different- to allow you to take care of yourself.

You cannot take care of anyone else, unless you take care of yourself first.

As a therapist, this can be a hard concept to communicate to some of my patients. We are surrounded by a society that goes, non-stop, all the time.  We want to keep up. We want to be successful as parents, in the work place, and in the community. We want our children to participate, and to explore their talents while they are young. When the symptoms of MS flare up, the temptation may be to ignore them and keep going.  Which may, unfortunately, bring on more symptoms.  So… what can be done differently to keep this from happening? That is up to everyone reading this to decide- what can you start doing differently, TODAY, to take care of yourself.