Gretchen Kempf

Disability for a Day: Multiple Sclerosis

The diagnosis that I have received for my “Disability for a Day” is Multiple

Sclerosis. MS is an autoimmune disease that affects the brain and spinal cord due to

damage of the myelin sheath, which is the protective covering of nerves. This disorder is

seen more commonly in women but can be found in both sexes. It is usually diagnosed

around the ages of 20-40 years but can affect all ages. Those living with MS can

experience a wide array of symptoms and the disorder affects everyone differently. Some

of the common symptoms include the following: muscle weakness, difficulty in walking,

loss of coordination and balance, numbness or abnormal sensation in any area, and

movement dysfunction of the legs and/or arms. Because MS affects both the brain and

the spinal cord, symptoms are not limited to motor problems. MS also can affect bowel

and bladder functions, vision, sexual functioning, speech, and swallowing functions.

These symptoms come in waves (or “episodes”) that can last days, weeks, or months

followed by periods of remission. One of the most common symptoms of MS is fatigue,

which usually starts to become pronounced in that late afternoon for most MS patients.

The extreme fatigue of MS may be induced by activities that seem simple and are

taken for granted by someone who does not have MS. In order to simulate the type of

muscle fatigue someone with MS may experience on a daily basis, I will have to wear a

7½-pound weight on each of my ankles and a 4-pound weight on each of my wrists. I am

a little bit nervous because I live on Taylor Avenue, which is one of the steepest streets in

the Hill Section of Scranton. Walking up and down that hill as I go to class and then

return home with weights on my ankles and wrists sounds extremely difficult and tiring.

I need to make sure I allow myself extra time to get to my classes since the extra weight

will probably cause me to walk slower than I normally would.

Now that I have experienced living with MS for a day-and-a-half, I have a much

better understanding of just how difficult and debilitating this disorder really is. I never

realized just how difficult and frustrating it would be to experience fatigue all day long.

Activities such as getting out of bed and walking to the bathroom became activities that I

would dread and that would require so much more strength than I ever would have

imagined. It was very difficult for me to be independent in a lot of my activities because

I just did not have the strength to move as much as some tasks required. I felt dependent

on others, as well was frustrated, when I was unable to walk as quickly as I wanted or had

to walk a long distance. I also felt embarrassed when I would finally get to a class and

would be perspiring profusely when it was barely 30 degrees outside. I had to put so

much more effort into walking to class than my classmates did.

By the end of the first night, walking back to my house completely exhausted me.

Once I was back home I realized that I had forgotten to get food from the cafeteria but I

was too tired to walk all the way back. Instead, I made myself some Ramen noodles. I

figured this would be a quick and easy task but, thanks to my simulated MS, I was sadly

mistaken. Holding a saucepan full of water and carrying it to the stove while wearing a

four-pound weight on your wrist is anything but easy. My arm was shaking as I carried

the saucepan from the sink to the stove and, by the time I made it to the stove, I clumsily

dropped the pot onto the burner so hard that the water splashed everywhere. Standing at

the stove, I then realized that I had to walk all the way back to my cabinet in order to get

the package of noodles. Once I completed this task I put the noodles into the water and

pulled up a chair to sit while they cooked. I was much too tired to stand! When the

noodles were finally prepared, just lifting the fork to my mouth for each bite was a

workout in itself. I would take breaks and bring my mouth very close to my bowl so that

my arm would have a smaller distance to travel between bites.

I also faced challenges while doing my homework, brushing my teeth, taking

notes in class, and showering. Doing my homework and taking notes proved to be very

difficult because my arms would feel too heavy to lift in order to write. I was forced to

switch from using pencil to using pen because the tip of the pen glided better across the

paper and required me to apply less pressure in order for the pen to write. Sitting for

even a short period was incredibly uncomfortable. Another challenge I faced was

showering. After contemplating the effort that would be required to lift my arms to

shampoo my hair and to merely stand for the length of a shower, I ultimately chose to

skip showering all together because I was just too tired!

Everywhere I went I could sense that people were staring at me and probably

wondering why I was walking so slow and was wearing so many weights. Being

“different” made me very uncomfortable in crowds. I also opted not to go out with my

friends in the evening because I was too tired to walk anywhere and certainly did not

have any energy for socializing. I spent the evening in my room alone while my friends

went out for dinner together. This made me realize just how socially isolated a person

with MS might become. Personal relationships might dwindle if a person did not have

energy to go out and socialize with friends.

My friends became frustrated while walking to class with me since I would move

at such a slow pace. I even convinced one of my housemates to pick me up in her car

after one of my classes because I was just too tired to make the walk back to Taylor

Avenue on foot. Getting a ride to and from class was just one adaption that I had to make

for myself in order to save my energy for other tasks. Writing in pen instead of pencil

was another adaption that made taking notes and doing homework much easier. I also

found myself sitting down to complete tasks such as brushing my teeth, brushing my hair,

putting on make-up, and cooking dinner in order to conserve energy.

The experience of having this disability was not what I expected. I knew the

experience of having MS was going to be tiring, but I did not realize the extent of the

fatigue. After a walk to my house from Leahy I was completely exhausted and found

myself struggling to catch my breath. Simple walks to the cafeteria that I had never

thought twice about became the longest walks of my life that were filled with taking

breaks here and there. Fatigue does not sound like a terribly difficult challenge at first,

but living with it for a day-and-a-half really opened my eyes to just how debilitating it

can be.

An occupational therapist most likely would use a maintaining approach when

working with someone with MS. There is no cure for MS so muscle weakness and other

symptoms increasingly get worse over time, often resulting in an inability to walk

unassisted or a complete inability to walk. Because of the trajectory of this disease state,

treatment sessions should not be aimed at obtaining new movements or increasing

strength; rather the aims of treatment for MS should be to prevent further muscle loss and

to maintain existing movement. An occupational therapist could assist a patient living

with MS with proper transfer techniques from their wheelchair onto different surfaces

(especially if they are new to being in a wheelchair) and also could teach them safe ways

to perform ADLs using adaptive equipment or compensatory techniques. Some adaptive

equipment that would have been beneficial to get me through my day-and-a-half with MS

are hand rails in the shower to hold onto when I was feeling tired or a shower seat in

order to let me actually sit while bathing. A backpack on wheels would have been

extremely helpful since the weight of my books was just too much additional weight for

my overly tired body.