I woke up in bed at like 2 o'clock in the morning I hadn't been
out drinking the night before but it was like the walls are moving and stuff around you but did this was a little bit more severe
later on that day want to my at that point just by normal doctor just
to see me on what was going on in so I went for
an MRI and the doctor had said we can officially
call it MS but I've seen of enough brain scans to know
that where the lesions on my brain were that you have ms I didn't have any physical limitations at all because I could in essence hide it very easily from whoever cuz I didn't have any stuttering or speech problems I could play sports run one of my passions is photography and I've been
in taking photos since high school and
nothing was affected initially said that first two in the morning episode Glen and I have been married 15 years it
was a while after he was diagnosed before cognitive issues started showing up and I started
noticing that he would be forgetful of a word or and trying to think up a TV personality or
something and couldn't come up with a name and that was very unusual for him. I didn't wanna
overreact but then some other things
started showing up. It would take him a little bit
longer to get going on a sentence and it was more
than just a stutter. When he spoke his stories would just kind
of go on and on. There wasn't really a start middle and end and I think that's when I was fine I
like I think there's something more going on here. Cognition is the most complicated human construct that there is. It
really consists of the ability to take information from the
environment and attend to that information Sustain that attention and if the information is important to learn
it and then store it somewhere in the brain so that it can be processed later on. So
really it consist of taking information storing and processing it and acting on that information. All that
is cognitive processing. MS is very individualized. So you see a lot of variability but in general you can have some general rules about types of cognitive problems. So
processing speed seems to be an area that's that's pretty
common learning and memory is also probably the
the area that's been studied the most and the problem
seems to be primarily in a difficulty learning
information to begin with as opposed to retrieving information
from long-term storage or perseveration coming up and
resisting other alternatives. You might know what the right answer is but you can't plan how to do the right answer. These are very significant problems in
which are often interpreted by the patient to the family is a memory
problem but in fact it may not be a memory
problem and so therefore the proper assessment is critical. In the beginning when I was first
diagnosed I pretty much suffered with fine motor issues like a pins and needles. Many of my
symptoms were visible but then I also had invisible
symptoms. The invisible sometimes were more so in in terms of my emotional well-being as
well as the pain that I was feeling. As my symptoms started the change it made me
wonder in terms of what my journey MS is going to be like. When I had
mobility issues immediately I was thinking okay will I
ever be able to walk again will I ever be able to go to work again. Things like that I'm a single woman I don't have anyone you know I don't
have any kids and it's just me so if I can't do it how does it get done. It made me start thinking
about what my future is gonna be like and then on top of having those thoughts I'm
going through everything that's going on in my workplace I found it hard and harder to get to work
once I got to work I found it harder and harder to
concentrate. I'm very social As long as there's gas in my car I'm gone but the thrill of getting in my car and
traveling and going somewhere new even seeing friends I didn't want to and this became my routine Mood is the internal persistence
subjective emotional state the person and there's
disorders of affect which is the external expression of
mood for example if one had has a depression one will feel said most to the day
nearly every day and lose interest in all the things
you're usually interested in It's associated with concentration and
attention impairments a low self esteem and sometimes in severe cases suicidal ideation. Depression is sadness but it could
also be irritability and sometimes you get a combination of
the two. So a loved one starts noticing a change in the person's behavior. They become a bit more short-tempered or a
bit snappy. They do things that are out of keeping with the usual character You might be sleeping badly, your appetite
changes. You can lose your sexual drive When it becomes um depression becomes
more severe you have posed to self-harm Another disorder mood that occurs in multiple sclerosis are anxiety
disorders it's not known but the prevalence that
many anxiety disorders are in MS but we do have a number of
research studies that have demonstrated that clinically
significant levels of anxiety that is a level of anxiety that will
kinda cause the person great deal of distress and impair
their functioning is highly prevalent in MS and I
guess it's no surprise that MS could precipitate anxiety it's an
uncertain unpredictable disease and the person has
to deal with things that they've never had to deal with before I was trained as a doctor and I had just
come back to the States so that my kids would start are high school here with the mood changes it was difficult but it became more apparent when I started
fighting with my husband without no reason the relationship with your husband or
your significant other can become really strenuous. at the beginning there's no
understanding why things are happening the way they are you end up fighting until you
realize they okay hold on a second this is not our usual relationship, what's going on there. last year was really
bad I would get really upset when it was four o'clock in the winter
and it was dark and I was alone and he would come up home and I would just explode without no reason. we decided
that may be part of the problem was that I
was alone in the house I realized I was having cognitive changes when I started um forgetting things that I needed to do. The worse worse one when I almost burned the house because I had forgotten I was cooking I brought it up to my boss cuz I was
worried about keeping up with work load that I have and she
said but you're doing fine there's no trouble I was talking to her and i said you know
the problem is that I started at this level you know and i know i that have come to
this level and it may be that this level is the normal for the rest of the
people but for me it's not both disorders of mood and cognition
are very prominent symptoms of MS. Epidemiological studies on the frequency of how often these
disorders occur in MS suggests that severe disorders of mood occur in up to 50 percent of person's
with MS. disorders of cognition also occur in
between fifty to sixty percent those persons
with MS There's very robust evidence now to show
that depression is a brain disease in multiple sclerosis
with mood it's more complex because of the lives
that we lead and how social factors can influence how you feel That said is now a growing brain imaging database showing that particular changes
in the brains of MS patients are linked to depression. It is a very
complex question to try to address what causes changes in mood & mood disorders in MS. we
know that it is highly likely that some of the
mood disorders particularly depression are caused by
living with an unpredictable a disorder that can
exacerbate remit progress and there is a great deal
of uncertainty that the person with a MS has to adjust to in living with this disease long-term.
the relationship between disease-modifying therapies and
depression in MS is very clouded it was thought earlier
on that the interferons could precipitate
and cause depressive episodes in MS subsequent
research has not found that that clearly is
taking place when it comes to mood and cognition in
people with MS we think they're overlapping conditions. we think that mood can cause cognitive and cause cognitive
impairment of its own and also when people think that
their cognition is impaired that they think
they're having thinking problems many times is because they have some
problems with depression depression can cause perceptions that
are thinking is poorer and it can also cause real worsening of our thinking abilities
the cognition probably two three years ago it started. it was small things
looking back I realize that I don't really leave my apartment without double checking and triple checking to make sure I have my phone my keys whatever it may be but I forget
so many other things I'll I'll be at the elevator of my hall to go down and then have to run back to my apartment or I'll be in the lobby of my building and have to go back up to get my whatever I forgot. I can't pinpoint a
moment that was told me that a MS is definitely
affecting my cognitive type of things it was more up of a overall feeling consensus in my
name that things weren't lining up properly so we had
gone through a number of figuring out how to deal with
different symptoms already this was just sort of another hurdle that we you know had
to get over not that for getting a word affects your
life in any drastic way but it starts making you realize that you know there's brain processes that are being affected
thought processes and and and it's a little scary cuz
you're not sure where it's gonna go I got to a point
where I was starting to feel uncomfortable in the car driving with
him I finally put my foot down and said I I don't feel safe in the car with you
anymore while you're driving and that was a really really hard one
and there's so many things about MS that take away freedoms that you have take away your ability to do things you
want to deal cognitive problems really have a vastly significant impact in
everyday life five years post diagnosis up to
seventy percent of people become unemployed and largely because of cognitive
problems and fatigue so it's a huge impact on employment on family life just imagine you know no longer being able to help
your daughter with her homework impact and socially with your spouse
things in at the same in that same person you know you can't do the same things uh socially family economically financially a huge impact cognitive problems without a doubt has
an impact on symptom management and self-care you
can imagine forgetting to take your medications the first step is a go talk to your
doctor and and say things are, i'm having some difficulties doctor may do a
kinda a simple test to have mental function with you in the office to see how
things are going but often those tests aren't that sensitive or specific for cognitive impairment in people with MS your doctor he or she
may refer you to another person to do a more thorough
assessment might be a neuropsychologist might be an occupational therapist who
might be a speech pathologist depending on where you live for someone to do a bit more thorough
assessment of your cognitive abilities the importance of a thorough
neuropsychological assessment is that it will show clearly the
person's cognitive strengths and cognitive weaknesses that serves as
a template for treatment plan for rehabilitation cognitive
rehabilitation is kind of like physical therapy for the
mind you know it physical therapy isn't going to make the
lesions go away that you know impair walking ability and cognitive rehabilitation is not
going to make the lesions go away that have impaired learning and memory
but physical therapy can significantly improve walking and balance and cognitive rehabilitation can help
the person learn by using their cognitive strengths to
compensate for their cognitive weaknesses so the
neuropsychological assessment serves as the framework that allows the
neuropsychologist or the speech pathologist or the occupational therapists to develop a
remediation plan that is individually tailored to that
person for their largely either computerized or paper and
pencil tests in which the person is asked questions to determine can they
learn and remember things as well as they should for a person of
their education and age Can they attend to and concentrate as well as they should for a person again
of their education and age differentiating
cognitive problems from MS from to normal aging is is
complicated and really requires a sophisticated evaluation the number one problem in MS
perhaps is processing speed number one problem in aging is processing speed a lot of cognitive
rehab focuses on compensating for the problem and we have
specific techniques that we can do that and they can be very effective if in fact you have difficulty
processing information cause of slow processing speed we have ways to help you process make
sure you process that information if you process the information you can then learn it and if you learn it you
can then remember it that's compensating for problems is that
making your processing speed faster no but it's working with your processing
speed issues to make sure it you're effective in everyday life and i
think that's the best way right now to deal with
cognitive problems in person's with MS it's been more of processing speed on like it takes me
longer to um just think or to see or to follow the steps to realize what steps I need to take and also it takes me longer if I read something sometimes i don't realize what I'm
reading and I have to reread it the other thing that uh we realized that I had to stop was
driving because I started getting lost or all of a sudden I would be in a
place and I would look around I said where am I going what am i doing you know took me a
couple years to to talk to my doctor about it and I told him
you know I have these issues it would be nice to know if it's
really true or if he just my imagination that I'm just getting you know too tired to
do stuff people think that fatigue is strongly associated with cognition for
example when someone feels tired they assume that they don't think as well as it turns out if you ask someone to
complete certain tasks of memory or attention they actually
can rise to the occasion even if they're feeling tired on the
other hand if they're doing a task that requires a lot of vigilance and they're paying tremendous attention
over a period of time their performance on that task will slow that's known is cognitive fatigue
ability but most people when they describe fatigue or mental fatigue they're more describing a
perception at how they feel as opposed to gee I'm
slowing down over a 5-minute interval so we're still trying to dissect how that experience of fatigue really
translates into real life functioning people appear to
be able under certain circumstances to get
the cognitive tests done if they give themselves enough time
that's key if they try to be as calm and non
stressed as possible and if they can kinda eliminates
distractions people with MS have fatigue thats can be
very difficult to deal with and people with MS can have cognitive
challenges how the two relate is not straightforward they no doubt there is an overlap but it's not a one to one connection
One day at my doctor's office you know a simple question from my
doctor of so how's it going in that moment i just started to cry and my doctor kinda looked and she was
like you know you don't look like you in a course that made me cry even and in talking to her I kinda realize you know it's been months I've been feeling this way this feeling
of no me of not wanted to go out not wanting to be with friends not wanting to do much if anything but be in my bed underneath the covers
hopefully just turn my brain off and don't think about anything but trying to work through it
got harder and harder my doctors like understand
yes life will tell you all kind curve books
but having MS also can bring about emotional changes in you it
was like hearing it for the first when she told me you know and I in kinda sat back and
was like you're right I'm chalking it up to all of this
being just life but it could be the MS so as my doctor and I talking about you know maybe
you have a bit of depression you ever thought about that and at I first I was like nah it's not depression as
I have tears falling down my face individuals who become sad can also
withdraw they may lose interest in activities that formally gave them
pleasure they don't want to engage in things that
they used to enjoy and those kind of changes are often noticed very quickly by a spouse or by children depression is
also going to affect other people in that person's life their spouse their children so really looking at a syndrome that is very
very significant that could determine all aspects of
the person's life there has been a number of studies that have found that
depression particularly severe depression is associated with poor performance at work in persons with MS and job
loss there then a number of treatment studies to date
that have demonstrated that both antidepressant therapy and psychotherapy
particularly a type of psychotherapy called
cognitive-behavioral psychotherapy has been found to be effective in
ameliorating the symptoms of depression and MS so there are options out there for
successful treatment of mood disorder in MS then there's also
cognitive behavior therapy in there is a clinical trial in which they
compared CBT to on one of the selective serotonin
reuptake inhibitors one of the antidepressant drugs sertraline, Zoloft, and they found that CBT
and the medication were equally effective I and you don't get the side effects
from CBT of course it you might get from from antidepressant medication there's
another interesting finding that CBT can be administered over the telephone effectively to MS patients and I think
that's a very important a result because we know that our
patients can have difficulty coming into clinic when I doctor first talked about the
idea of medication I'll be honest I was a
little bit resistant just a little bit because there's
sometime a stigma that comes with the word depression so my doctor also
gave me something as she put it just to take the edge off can it worked you know it wasn't one of those things is worked just like that no it wasn't a quick fix on but I'd
noticed that in time in days I didn't wanna stay in bed as long I wanted to go out maybe take a
walk I wanted to go out and drive somewhere in my
car things that I liked to do I wanted to do
again wanted to hang out with my friends again
then it got to a place where you could keep me in the house all I
wanted to do was be out in the world again. we've done some
studies looking at people who have depression major depression in MS. we've looked at the ability of those individuals to be come more physically active or to
exercise and the impact of that on their mood they might walk some people might just stand more they might go to the gym they might swim
they might run but whatever they can do you becoming more physically active has been
shown to have a positive effect on mood doing what you can doing a little bit
more setting a goal achieving those goals in terms of physical activity can really
build on themselves and build you back to be able to do things that are very meaningful and pleasant for you
so people can do a lot on their own to kind of keep their mood up seek out
social support be with people who love you who care about you and and and stay
close to those people be engaged with your family friends your
community can all help let's say you're in another
social situation and you know that your slow processing
speed is gonna affect your learning and your
memory and you're in a party and there's a lot of noise stop people say let me make sure I got
that right let me see if i understand what you're
saying and to feel comfortable with doing that rather than getting
depressed and upset and avoiding the situations you want to be able to feel comfortable
I'm the kind of person that if I have a problem I look for a solution you have to look
what works for you but if you know you need help you have to
find it because it makes a lot easier your life we
discussed that company having a dog would help since we had
had dogs before any it was quite a while since we had a dog in
reality bon bom is a rescue by he rescued me he's all love so he only once to give you
love and he wants to receive love so in that sense it really calms you down I don't feel that
alone I don't feel that depressed I don't get that anger inside me that
much and the other good thing about the
dog is that he had make me move again which i was staying
mostly sitting down working on the computer and in bed working in the computer he makes me get up you know to feed him
he makes me get up to get him out and you know to the yard even do i don't walk him I roll in my scooter he walks around I start to socialize again with the
neighbors that have dogs and now he has dog dates play dates which you know makes me talk
to the neighbors and getting back my confidence the sticky notes have become my my way
of life basically I put sticking notes everywhere
and I write down everything even if I know
what I want to do I still write it down time
make sure that I accomplish what I need to do cooking wise I've figure out that if I do things in steps instead of trying to do
things all the sudden I do better or I depend on the timers basically on everything else I like to
bake a lot said that's one thing that I can still
do you know I can make I was able to do a 5 tier wedding cake for my son you can do
something to help your cognitive problems if you have a primary problem let's say
learning and memory that's due to differences and changes in the brain
chances are you can help make it better but it's not
going to get back to normal however there were ways to work with
those problems and so that you can be effective in
society how you define effectiveness is how well
do you interact in your world not how well you do on a memory test
when it comes down to cognitive impairment what to do about that we
can think of it in kinda two broad domains one is kinda how do I compensate for the
impairments I have the other is can the brain improve you know can we
improve actually how the brain functions so in terms like compensation strategies there's many
many compensation strategies out there and most of us everybody uses them to one degree or
another it's just a person with MS may have to use more different ones so we use things to organize
ourselves to schedule ourselves as reminders as memory devices we can
use paper you know organization tools when it
comes to I'm remembering information people with MS can you remind people that are talking to them
that maybe they can speak more slowly or you know they can give themselves
some time to repeat information that they need to remember I think there's a lot of exciting
research in really can we can we improve how the brain functions exercise aerobic exercise for six months
actually changes the brain so it causes new cells to be born in areas that that serve memory
function and actually improves memory
function a bit so um we're excited for the potential of aerobic exercise to
improve um learning memory and probably
especially speed of information processing there is a quite a bit research now to
show that there are behavioral techniques to improve one's learning and memory
they can really help in everyday life so as well if we know that the problem
is in initial learning information then what we do is make sure you learn
to begin with so there's lots of different ways to do this
arm one way is to um space learning trials apart so let's say you're reading a newspaper, so let me
read this article three times so I get it right we know if you read it
three times spaced apart but it's a fifteen minutes
you remember that information better than if you just read it three times in a row
there then a several randomized clinical trials
that have been published that have shown that verbal learning and
memory problems can be remediated in persons with MS
and those a improvements in verbal learning and
memory are associated with changes in the brain
on functional magnetic resonance imaging you know showing better network
connectivity in the brain how we reserve refers to the ability of
our brains to kinda go around workaround areas have
impairment and as some people are able to do this
more some people are able to do this less and um what we know is that there's some
things are kinda hard wired may be genetically like how larger brain is how
many different pathways it has but and some things are based on our
environment like in our childhood did we how far did we make it in school did we
study music so some of that's kinda in the past
but the exciting thing is that its we seem to be able to shape
our cognitive reserve and later in adulthood so um the extent
to which we travel the extent to which we use our mind stimulate our minds do you know exciting challenging mental
activities seems also improve our cognitive reserve and the more cognitive reserve
we have the more our brain is able to kind of
find pathways around areas that might get damaged and be able to kind of serve that
function kinda still get from a to b but in a
different route if you have a problem with your arm
starts to hurt you go the doctor because maybe there's something going on maybe they can help in a problem with
your thinking you don't wanna to not look into
that just like you would look into any
physical problem you wanna find out is there something that's going on what is it and what can I do about it one
the things I do to combat my cognitive issues is that if I know the night before say that I need to
bring XYZ I'll make sure I have that ready to go by my phone which
I know I need to bring with me the advent of touchscreens like your
phone or iPad has been great ift make lists on the phone or computer iPad or laptop and
send to one of the devices then I have a typewritten thing of what I
need to take and I can reference that make sure I
have everything I need I'm just thankful by I can even though
all the shakes and whatever um the and the cognitive issues and physical limitations I'm grateful that
has not robbed me of being able to see the picture I wanna take and the picture
I'm still able said take I can still hit a
button to snap the shutter I've learned to adapt
with my digital camera with the monopod and stuff and the vibration reduction take pictures I wanna do that I've learned
to take life as it comes and be happier with experiences instead of things one of a things that so inspiring
about Glenn is how driven he is and how dedicated he is to making sure MS doesn't take anything more away than it needs to
we're both dedicated to you experiencing the world and life and
taking advantage of every opportunity we can do for as long as we can do it
