Getting the Most Out of Occupational Therapy for Multiple Sclerosis

People unfamiliar with the term “occupational therapy” often assume it has something to do with job training. Occupational therapy actually addresses the things that “occupy” most of our time – tasks of daily living, which can include some workplace activities, but often focuses more on self care and functional tasks around leisure activities.

The main point of occupational therapy is to keep us independent and functional, to help people do things that they do every day better and more efficiently, despite multiple sclerosis symptoms or increasing disability. However, occupational therapy itself is not something that you get once and everything is automatically fixed. Instead, it is a process that requires teamwork and effort to figure things out and optimize solutions for each person.

Here are some suggestions to help you get the most out of your occupational therapy experience:

Be Specific (When You Can)

It is possible that you can just notice that you are slowing down and things are just getting harder. Or you may have stopped doing certain things (taking a bath, cooking meals, gardening) because it is easier to just take shortcuts, even though you used to enjoy these things. You just notice that you are starting to watch more TV, rather than do the things that used to fill your days.

However, it is also likely that you have had a scary or embarrassing moment or two that let you know that you need help in a specific area – bathing, cooking, getting around your house.

It’s important to let the occupational therapist (OT) know if there is something that you really want to address. Before your assessment or next appointment, think hard about how you used to do things and what you used to like doing. What has changed? What do you miss? If you don’t really put effort into figuring out what you want to improve, it might get decided by default, as OTs may assume that you have the same priorities as other clients.

For instance, I would be incredibly sad and feel like I had lost a piece of myself if I couldn’t cook new, exotic dishes, but really don’t care too much if I had to switch to sweaters and T-shirts because I couldn’t maneuver buttons. Others may take great pride in their wardrobe and prefer to focus energy on self-care.

Don’t Be Shy

Some of the predicaments that we find ourselves in might be pretty embarrassing. It kind of goes against social rules to start your conversation with someone with details of how hard it is to wipe yourself after using the toilet, or that you have urinated on yourself because you can’t make it to the bathroom down the hall and the close one is too hard to use comfortably because of your walker.

Trust me, OTs are trained to deal with all sorts of personal things. They can help you, but only if you tell them specifics.

Don’t Wait

Many people think that occupational and physical therapists should be called in only when things get really hard or impossible to do without assistance. This is far from the case. The whole idea behind occupational therapy is to keep people independent in their daily lives, as well as make tasks efficient.

Sure, you may have concocted some “work-arounds” for things that are getting harder, but an OT can probably help you streamline things even more, so that they require less energy for the same (or a better) result.

Their solutions may be as simple as moving some frequently-used items to more convenient places or introducing a simple little gadget that you never even knew existed. Again, the message here is that our energy is very valuable and many of the things that we do every day can probably be done “easier” so that we have the energy to do more things that we enjoy. Even when we are still able to get things done ourselves, working with an OT can help us conserve our valuable energy.

Do Your Homework

I have heard some people complain about certain forms of therapy, such as occupational or physical, as not being “enough” to address their problems. Often, those same people are waiting until they see their therapist to work on their specific goals.

Encourage your OT to give you “homework” in the form of exercises or tasks to do on your own. You can ask them to be specific (i.e. “button and unbutton your shirt 5 times a day with this button hook” or “use this device 3 times and take notes about what you liked about it and what you would change”).

OTs are trying to help us get through our days better, we have to put in the effort to help them to help us.

Ask for Equipment/Device Options

OTs have a whole mess of little gadget and device ideas up their sleeves to help us. Usually there is more than one thing that can get the job done and people have different preferences. Ask your OT to give you a couple of options to choose from. Ideally, you would be able to try things out before purchasing any of these things (or at least be able to return equipment after a trial period).

Look for Used Equipment or Distribution Programs

A friend of mine has a son with special needs who needs all sorts of equipment – big stuff, little stuff – that he later outgrows or no longer has any need for. My friend has been buying all of this equipment on eBay, as well as selling the things she no longer needs. She tells me that his therapists often know of others that are willing to sell their used equipment.

Also, the Multiple Sclerosis Association of America runs an equipment distribution program, through which they distribute bathroom equipment, home safety products and daily living aids to qualified individuals free of charge. Some chapters of the National Multiple Sclerosis Society provide grants to purchase equipment and devices, provide the equipment itself or run equipment exchange programs. Check with your local chapter.