Pat: I was in the U.S. Navy in the CBs
which is short for Construction Battalions.
And my expertise was blasting.
Taking out mountains and turn 'em into gravel pits.
Pretty interesting, good stuff.
I finished my contract, got out honorably, thank goodness.
And just went from there and learned a great trade came out.
It was a very successful business,
3 businesses later, been a millionaire twice.
The MS hit me and everything went.
(soft music)
Denys: The majority of patients
that I work with that have MS
tell me that fatigue is one of the biggest limiting factors.
That it impacts their life more than any other aspect of MS.
Pat: Right around 1:00, 2:00 in the afternoon,
I start running out of energy.
It could be so severe that I won't have energy
to get off the couch to go just make dinner.
Jennifer: People with MS related fatigue
might describe that fatigue as being
like having a heavy weight on them
but it's hard to move, it's hard to get out of bed.
Pat: It is like walking around with no blood in your body.
I don't know if you can relate to that,
probably can't 'cause you're not a zombie (laughs)
but that's what it feels like.
Kathleen: Fatigue is perhaps
one of the most significant symptoms
that people living with multiple sclerosis can have.
It can really impact a variety of aspects of their life,
impact their ability to work, participate with their family.
Pat: I used to run a business and raise my kids by myself
and take 'em to school and make sure
I was there to pick 'em up and all that stuff.
I was raising Natalie by myself there for a while
and then I realized that I'm no longer
capable of attending to her needs.
But that was a sacrifice, a big time sacrifice.
Jennifer: When someone
with MS comes in complaining of fatigue,
I like to get a sense of what's the source of the fatigue
because that can help us figure out
what intervention might be most helpful.
So morning time is best for you.
Pat: Yes.
Jennifer: And does that impact how you plan your day?
Pat: Absolutely.
Kathleen: It can be directly from their MS
and it can be related to something not their MS.
Just like a regular person in the population
might have a sleep abnormality,
a thyroid problem, vitamin deficiency,
somebody with multiple sclerosis could have that as well.
We wanna make sure that we rule out medical problems
that have easy and good treatments.
We wanna make sure that we have
evaluated their psychological state
and we don't miss that as a source of fatigue.
We wanna review their medications
and make sure we don't have a medication
that's making their fatigue worse or causing it.
(soft music)
There are some medications that
can be helpful for people living
with multiple sclerosis who are experiencing fatigue.
There's three main ones that we go to,
amantadine, modafinil, and methylphenidate.
Pat: I used to try drinking a Red Bull and stuff
to extend my day 'cause I had things to do.
No help.
I've taken other medications, methylphenidate and stuff
and those I didn't really like taking those
because it was messing with my head.
Two months ago they worked,
this month they don't.
Kathleen: There's definitely
treatments other than medications
for fatigue and one of them is exercise.
Denys: We do wanna make sure that exercise
is a big part of their daily activity
just so that they can maintain their strength
because then they'll get fatigued a little bit less.
We also know that different kinds of psychological treatment
such as something called cognitive behavioral therapy
can be very effective for treating fatigue.
Jennifer: We wanna
take a look at what are the thoughts coming up?
And what emotions are coming up around that
and if there's unhelpful thoughts
we can start to challenge those unhelpful thoughts.
Pat: I had no idea until you showed me this stuff
that there was an actual action I could take
to rearrange my thinking instead of going dark.
There's ways you can change your thinking,
which I didn't know.
Like when you wake up in a positive attitude,
you might go on positive through the day.
Kathleen: We know that people with multiple sclerosis
who experience increased heat can then experience fatigue.
Denys: Pat and I have worked on several different
approaches for fatigue management.
A big one was cooling equipment
so he has a cooling vest, a cooling hat,
some other cooling equipment that he uses,
an air conditioner in his home.
Pat: I live in a controlled environment.
I have an air conditioner that was given to me by the VA
and if you'll notice on the wall behind you
I got that big thermometer hanging there.
It's gaudy as heck but it's a very useful tool.
I'm a 71 degree guy.
Having learned through trial and error
how much heat I can take in a day without losing my energy.
Denys: One of the things that we can do to help with fatigue
is to get a good night's sleep.
Working on sleep hygiene is kind of a hot topic right now.
Jennifer: That would be things like going to bed
at the same time every night,
waking up at the same time very morning,
sleeping in a cool dark space,
making sure that it's a quiet space, that kind of thing.
Denys: Occupational therapy is very important
in helping people manage fatigue.
We're looking at the activities that they do
and if there are ways that we can modify them
to help them conserve energy, or do them more efficiently.
Say cooking in the kitchen, we might recommend
that somebody sits while they're cooking.
So what do you think as far as
where those are located for energy?
Pat: Well, I'm pretty tall so I use my cabinet--
Denys: Absolutely.
Really thinking about how things
are being done to be more efficient.
Pat: OT gets you adaptive things.
Like for instance I like cooking
and one time I told Denise that
I would walk around in that kitchen
and I'm looking around and there's
blood on the floor and stuff,
and I didn't realize 'cause my numb arm
I'd cut my hand so she got me an adaptive glove,
a culinary glove that you can't cut through or nothing
which I use now where I save my fingers.
(laughing) That's why I was telling Denise,
look I got all my fingers still!
Kathleen: Mr. Stipkovich is able to walk short
distances and normally uses a cane.
But if he wants to do something where
the walking distance is longer,
he would not be able to do it just walking
so he has a scooter and it's a great example
of using a tool to sort of extend his energy,
extend the amount of things that he can do
so that he can participate in life
either grocery shopping or going
on activities with his family.
Sometimes a person living with multiple sclerosis
will come to a point where they realize
they can not increase the amount of energy
and activity they can do just by
exercising or pushing themselves harder.
At that point, it's important for them
to consider what it is in life
that is most important for them.
What they really want to have happen during the day.
Pat: I do prioritize different activities during the day
according to their value and necessity.
Kathleen: If it's something that he really wants to do,
he'll come up with a way to pace himself
or a strategy to help him to get there
and at the same time, sometimes he says no to things.
Pat: You know I bring my scooter out here
and I fish right here off this pier.
Daughter: You do?
Have you caught anything?
Pat: Um, no.
(laughing)
It's necessary to be successful in
the day to monitor and meet her.
The amount of activity you have
within those specific hours of your abilities.
And I usually don't get them all done.
So I don't disheartened about it.
They'll usually fix themselves.
Honey you're getting as tall as I am.
Daughter: (laughs) I know.
Pat: You gotta quit growing like that.
You're my baby.
Daughter: I know, seriously.
(laughing)
Kathleen: How's everything going?
Pat: I do have an issue with energy.
Kathleen: Mm-hmm.
I think the most important thing
about fatigue and multiple sclerosis
is that patients remember how important it is
to bring it up with their providers.
Not just their Physician, but also
the Physical Therapists, the Occupational Therapist,
the nurse bring it up, let people know
because there's a variety of strategies.
People should not have to suffer at home from fatigue
when there's a lot of good strategies to use.
Pat: The negative symptoms that we have
associated with MS are manipulatable.
There are little secrets and little tweaks
that you can learn through your physicians,
especially at the VA hospital in Seattle.
I mean they've got more moves than a Swiss Watch.
Kathleen: In my job
dealing with people with multiple sclerosis,
I'm always amazed at the strength that I see.
These people are living with uncertainty,
they're living with symptoms sometimes that other people
don't see, other people don't see their fatigue
and yet I'm amazed with their strength,
their will to go on, their drive, their focus.
I think the bravery that comes
with living with MS is quite astounding.
Pat: I've gotten so much help in regards to that
and advice from the VA and stuff which is,
I mean I would be a basket case
like I was when I first came around to VA
and they've helped me sustain my standard of living
to the extent that I've got some hope
and I'll go forward instead of just giving up.
We used to do a lot of fishing didn't we?
Daughter: Yeah, we did.
Jennifer: That was our deal.
Daughter: We are invested and we do care
and I think that he sees that and he feels that
and I think we all see ourselves as advocates for him.
I enjoy working with him
and I know his other providers do too.
Kathleen: It's very touching
to get to be a part of the journey
and to be here witnessing their strength.
Being sort of a standby assistance
hoping that I gleam some of their strength
for times when my life may not be going well.
Pat: Seek out the answers 'cause they're there.
Don't give up and throw the towel in before the miracle.
'Cause there's good meds coming
and there's great professional help
you can get for this disease so we
don't have to ever do it alone.
That's your niece.
Daughter: Yeah, she's my niece and she's what, 22?
Pat: Yeah, she's 22 now.
Daughter: And I'm 16 and I'm her aunt.
(laughing)
(soft music)