By Lori Kostich MS, CCC-SLP
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.
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
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:
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?
When is the right time to start physical therapy?
It is ideal to get started with a physical therapist when you first receive your MS diagnosis. A physical therapist will help you preventatively and establish a baseline even if you are not having symptoms with your strength, balance, or mobility.
I often describe a fitness continuum as follows:
Try to keep yourself “at the top of your game” (to the right of the arrow above). If your strength, balance, endurance, flexibility, and mobility are optimized, you will be less likely to feel a significant change during times of illness, injury, and/or exacerbations. Also, refer to the following diagram:
If you have been previously diagnosed with MS, it is still the right time to connect with a physical therapist. Like in many medical conditions, early intervention is key. Everyone has room for improvement with their fitness level whether or not they have a MS diagnosis. So let’s get started exercising and be sure to follow any precautions outlined by your healthcare provider!
A bit about Julie...Julie Hom, MPT, NCS is a physical therapist specializing in the treatment of Multiple Sclerosis and balance and fall prevention. She is a Neurologic Certified Specialist (NCS) through the American Physical Therapy Association (APTA) which is a certification confirming higher skills and knowledge with respect to neurological disorders. Click here to read more about Julie...http://www.healthcarejourney.com/read-about-our-virtual-ms-center-staff.html
Note: the information that is being provided is for "Advice Only" for individuals in California.
Sarah Frank PT, DPT, MSCS
Julie Hom, MPT, NCS