Once upon a time ...|
It all began early 1998 when I noticed strange spots in my field of
vision. Maybe it was from all of the pollen that spring-time had brought
down for everyone to enjoy, especially with all of the seasonal allergies that
I have. Eye drops never seemed to work and my glasses were clean, so I figured
that I had better go see an Ophthalmologist.
After an exam and several tests, the doctor decided that it was most likely just
seasonal allergies causing pressure on my eyes. These spots would magically travel which ever
direction that my eyes turned they were more noticeable if I was looking
at a bright white wall with plenty of light. My vision itself hadn't changed so I could
live with that. I could also live with the seasonal allergies just like I had
for over 30 years. The doctor believed that once all of the
pollen was back to a normal amount, the pressure in my sinus cavities
would drop and take the pressure off of my eyes. About four months later it came
true, those crazy spots just seemed to have gone away. I was relieved that
it was just my allergies.
Now it was the middle of 1999 and it was a typical hot and humid Texas summer,
just like it always is. I was adding a workshop onto our home and I was doing
the roofing by myself. Remodeling was a normal activity for me, except roofing
has never been a favorite, and the reason becomes clear when you
are in the middle of doing it on a hot day. For two days I was in the heat and humidity and
it sure seemed to get me tired and run down. I've always been a non-stop type of guy,
and I guess I just figured that this is how it feels to be over 30 years old -
who knew? A few months passed, autumn arrived and I still felt a bit tired, but
I guess I felt that just a bit more rest was all I needed.
Now looking back, I have always worked rather hard. I had a job that required me to
be on my feet the majority of the day. I had a work schedule that had me working
days and nights and when you are young and single, it's not a problem to be
flexible and work your butt off. I also gained added responsibilities over time
that required me to work additional hours. A 50 hour work week was rather slow and quiet, but
when it was 70 hours at time, that was when you would feel it.
Now during this the same time, I always had a lot of work to do at home that I
truly did enjoy. I had purchased a 70 year old house back in the early 90's and I was
bringing it back to life. I had also gotten married to a wonderful woman in during
that time. We then had our son in 1998, and everything that you think is important
before a child comes along means nothing after they arrive. Life sure can be great.
Now once our son was born, my wife went back to work part-time. We were both
fortunate at that time to be working for a company that let us work opposite
schedules, allowing one of us to always be with our son while the other worked.
We both felt that this bit of sacrifice by the two of us was the right thing to
do for our son, and looking back it sure was the right thing to do. We didn't
see as much of each other as we would have liked, but we made up for it when we
Now let's move forward a bit to the spring of 2000. My wife and I took a trip to
San Francisco and Napa Valley and my mother-in-law came to our home and stayed with our
son for the entire week. Now to the trip and those horrible hills on the streets of San Francisco. I
used to go hiking and walked all day at work, so why were those hills so hard to
climb? The best way to experience San Francisco is to walk everywhere, and three
days took its toll on me. Once in Napa Valley I didn't have to walk too much, but
I was tired and I couldn't seem to get enough rest. This is when the thought started up in my head that "something
might really be wrong" with me, physically, and I'm know my wife was thinking the same
thing. The trip was great, other that the realization that I may have a really
The tiredness came and went till late that same year. Then I began to notice a
bit of a tingling or numbness in my right arm. I must have hit my "funny bone"
too many times while playing with my son. The beginning of 2001 arrived and
slowly so did the numbness but now it seemed to have spread. My right arm was
still numb, and now with the addition of my right leg and the right side of my
face. Come to think of it, those spots were back in my eyes, and I couldn't seem
to think of when they crept back up.
It was a busy few weeks and it seemed that besides being numb, the right side of
my face felt like it had "dropped" a bit and my speech was slurred. This
symptom reminded me of the time my good friend Sammy was diagnosed with Bell's Palsy,
could that be what I had? I hadn't really noticed, but my right foot seemed to
be "dragging" just a bit. I made an appointment with my internist and saw him
the very next day. I was trying to think of what it could be, a tumor, stroke,
cancer, Bell's Palsy, or was it the secret plot that my wife set up to get
revenge on me for keeping the air conditioner so low. It surely couldn't be the
latter but everything starts going though your head as to way it may be.
My internist was an extremely good doctor and I still count myself lucky to have had
him as my primary doctor. My wife went with me to see him and after a short
exam; he had two additional exams set up for me for the following two days.
My first exam was my first experience getting an Electromyography (EMG) and hopefully my
last. I have been shocked many times in my life, while wiring inside homes,
electric cattle fences, and cross wired car batteries and this fell somewhere in
the middle. The first part was sending electric impulses and basically seeing if
there was a reaction (a zap and react). The shocking wasn't the part that hurt
so much, but rather the second exam when the probes (basically a needle) had to be
push into the skin adjusted until it hit the nerve, on each and every nerve. The
findings of the exam showed that my peripheral nerves where my problems are, were
in perfect working order. So this was just another electrocution I didn't need.
My wife went with me to this exam and for some reason she enjoyed making zapping
noises for some time after. She has a great sense of humor with a little touch of
evil as an added bonus.
My second exam was an MRI, which really wasn't all that bad. It was a bit
strange having my head taped down so it couldn't move at all and a metal head
cage then locked down over that. Then there was that clear and cold something
that they had to inject half way through, it was just Gadolinium and I would
soon find out why. Then they put ear plugs into my ears as well as covers over
that, the reason was soon very obvious. Never having had an MRI before, I wasn't
ready for the loud clicking, grinding, banging, and zapping sounds than an MRI
can produce. Over time you become used to the noise and it kind of becomes
rhythmic in its own special way. I did get an hour and a half of "quiet time"
which was not normal especially with a three year old son at home. When this was
over, my wife and I went home and waited anxiously till the next day.
That next day started with my wife and I going out for some lunch and to see
the movie Hannibal, the one where Anthony Hopkins character opens a man's skull, cuts
out part of his brain, cooks it, and feeds it back to him. Not a cheerful movie
to say the least, but entertaining and ironic. Just as we got back into our car
I received the expected phone call from my internist. The MRI of my brain
appeared to show multiple lesions and indicated that it was most likely Multiple
Sclerosis or "MS".
Once again, how ironic, I just saw someone's exposed brain in a movie, and 15
minutes later I find out I have a problem with mine, maybe they can cut it out
My internist knew me well enough so he didn't need to have me drive back just to
tell me, so over the phone was fine. He then informed me that he had already set
up an appointment with a neurologist for the following day and he sounded
hopeful. When a doctor that you have known for a while sounds hopeful, it means
a lot. We proceeded to drive back home and sat down in front of the computer and
were reminded how good the internet is for finding information.
Once again let me just add that I was very lucky to have an internist that from
one single physical exam, knew what the signs pointed to almost immediately.
Many other people haven't been so lucky; they were or have been misdiagnosed for
years probably due to the fact that it has been and still remains a relatively
unknown disease. In the past, many doctors had never seen the first hand
symptoms of MS and didn't know what they may indicate and now most doctors,
hopefully, are at lease aware of its existence and what the signs indicate.
One of the first websites that we ran across was that of the National Multiple
Sclerosis Society and that is where I learned what MS really was. I had never
known that much about MS other than it was just one of those diseases that you
never heard much about if you didn't pay attention. I was just happy that it
wasn't anything worse, not to say that MS isn't a very bad disease but there are
plenty of things that are truly worse than MS. I didn't have a tumor, a massive
stroke, cancer, and my wife wasn't trying to get revenge just yet.
As we looked over a lot of information that day, we were able to sit down and
figure out that we could deal with it. MS wasn't the end of the world, there are
treatments for it, and no matter what, I had my family and that was my greatest
reassurance. Maybe even better, I had a really good reason why the air
conditioner was always set so cold and my wife had one less reason to pick on
me, just maybe.
We met with my neurologist, looked over the MRI, did some exams, and set up a
lumbar puncture or spinal tap. We had the pleasure of receiving that lovely
spinal tap the very next day.
The actual tapping of the spinal fluids wasn't bad, but the 15 or 20 shots to
numb my back hurt rather badly, but I kept smiling. I have always had a rather
high threshold for pain but in the words of my good friend Dan, "Holy Crap" that
didn't feel good. Then there was the size of the needle that's standard on any
lumbar puncture, and even though it wasn't, it looked 6 inches long but was only
4. Without asking, my wife was there by my side and she helped to hold this
shaky man still. We laughed during the majority of the procedure, except when
the actual tap was in and then we kept our mouths shut and stayed still.
We went back a couple days later and that test verified that I did in fact have
MS. We were already expecting this and were prepared for the news. We discussed
what we had read and what the neurologist expected for my road ahead.
He had experience with treatment involving Betaseron and it seemed promising.
That was the therapy that we all agreed on and we got the ball rolling. On the
lighter side, as time went on my neurologist called me and my wife "Fred and
Ethel" from the "Lucy Show" since we were always happy, in a good mood, and
usually laughing. I could deal with being called that, it matched with both of
our "dry" and "crusty" sense of humor.
The Story Continues ...
Some of what MS took from me back in 2001 was part of my vision in the form of blind
spots from the Optic Neuritis. My equilibrium has never been the same and the
numbness over the right side of my body is always present. I can't feel anything
hot with my right arm, so I learned early on to use my left hand to test my
son's bath water when I used to give him baths and also when I pick up handles
of pots and pans while cooking.
I learned how to keep my right foot from "dragging" when I walk and keep an eye
on the drop of the right side of my mouth when I talk. The loss of strength in
my right leg and arm has been compensated by staying active, but it still gives
way at times and is a daily battle. That wonderful feeling of my arm and leg always on fire and the
tingling along with the constant pain is from time to time not too bad and then
rather unpleasant at other times, but you deal with it. I've tried many paid
killers specifically for neurological pain, but they don't work.
Now the tremors on my right arm will sometimes be complimented with tremors on
my left arm, thus giving my head and torso a bit of a shake, I won't notice it
till my wife calls my attention to it. It's difficult to sleep at times when you
can feel your body pulse and even shake causing the bed to move without even
putting a quarter in.
The fatigue is enormous and a constant reminder that it drains you. My body is
always hot and I still have to keep the temperature of the house a bit lower
than normal. When days are hot, I can't stay out long but I can recognize when I
should stop and cool down.
Now these are just the most obvious gifts that MS has given me, but you know it
surely could be worse and for that I am thankful. With all this I just smile,
keep my mouth shut, and don't complain. If I were to complain when it hurt or
something was wrong, then I would be constantly complaining and what good would
that do? Seriously, nobody would want to be around me if I did. So other than
these and a few other inconveniences that I don't complain about, I am doing
When I began the Betaseron treatments it took about 4 or 5 months till many of
my symptoms eased up. My job of working my butt off and taking care of my son
when my wife and I swapped off began to take its toll on me. I had to slow down
or I most certainly would be back in the same pile of stuff I was in 6 months
prior. My time with my son was not up for debate, so I was able to cut my time
at work in half for a while.
When it was determined that I couldn't continue working a job that was physical,
stressful, and around high temperatures, the choice was made to stop. The next
year and a half of battling an insurance company regarding the Long Term
Disability Insurance should not surprise anyone. Needless to say, not being able
to do my old job anymore turned out just fine in the end.
I took my Betaseron every other day for 5 1/2 years, that comes out to 1065
injections and I only had problems with 5 during that entire time. The first
time that I didn't receive an entire injection was when my wife encouraged me to
try my stomach after 6 months of avoiding it. That wasn't the most pleasant
experience, but you learn to deal with it.
Besides those 5 "screwed up" injections, I took the 1060 exactly as directed and
I never skipped a day. You become accustomed to giving yourself injections
rather quickly, but you never stop hoping for an end.
Over time, the scarring on all of my injection spots became rather bad and since
I am a rather slim person, I wasn't left with much fatty tissue to inject into.
My wife said that I could take a bit from her, but I really didn't think that
would work out for me. It's kind of funny that so many people would like to get
rid of a couple pounds of body fat and I on the other hand, couldn't seem to add
any. My problem was that I have never really had that much body fat to begin
with and less since I had to be more careful and watched what I ate.
About 2 1/2 years after being diagnosed, we moved to Georgia. We had always
talked about moving toward the east coast and there was no better time than the
present. Instead of a long hot summer we can now enjoy all four seasons. When
it's hot and humid, it's not for too long and it's not as extreme as it was back
in Texas. My body seems a little better off with the move and we have a chance
to get out and see even more of our great country.
I found another good neurologist that has been right in the front lines of MS
research and he will talk with you, not down to you. The scarring from the
Betaseron had taken its toll on me but still it gave me 5 1/2 years without a
single exacerbation. All of my symptoms and loss of function never grew worse
during that time. I have days with small flair ups where one day the numbness
increases, the next day it's the tremors, and so on. The big picture of it all
is that the Betaseron did its job for me and held back the enemy - my enemy.
My neurologist to this day has been involved with Tysabri during the beginning
of all of the clinical testing, when it first came on the market, during its
withdrawal, and then its reintroduction. We had discussed this for some time and
with the scarring issues making it rather painful to get a complete injection of
Betaseron, we both felt that it was time to change.
With the PML scare and the inconclusive findings, it was allowed back and there
were so many people that were so happy, including me. The side effects of the
Tysabri seem to be fewer and less severe than my previous treatment. You don't
have to worry about giving yourself injections every other day, but rather just
receiving an infusion once every four weeks, and that is pretty good in my book.
During the summer of 2013 and 83 infusions of Tysabri under my belt,
treatment has ended. The better testing for the JC Virus and PML risk has given
me a "titer" level of over 3, giving me the risk of contracting PML at 1 in 135.
When the risk was 1 in 1000, it was an acceptable number for me, but a 1 in 135
chance of getting PML makes it unacceptable. If I had not tested positive for the JC
Virus and my risk was at the new 1 in 2000 level, I would have stayed the course
since I had no major changes while on it. Tysabri is effective and safe for
those who do not have the JC Virus.
Timing could not have been any better for me and Tecfidera. I began treatment
with it early autumn 2013 and it seems to be working fine as of now. Even with
the JC Virus in me, my chance of contracting PML is the same as the general
population and I can live with that.
I haven't had any significant increase in any of my
symptoms and there is no marked progression. Several of the lesions in my brain
have faded a bit and showing that regeneration of the myelin could be taking
place. For anyone with MS, the best that one can hope for is a "status quo" of the
progression, and that seems to be where I am.
Does the story end here, I certainly hope not. You tend to look at life a bit
differently, and as far as life goes, I am a lucky man. I can say that I'm lucky
because despite all that my body has lost, I've gained so much more. Sometimes
you may be too busy to see or appreciate all that you already have before you,
but now I'm not quite as busy and I have the time to enjoy it all. For this I am
I am a lucky man ...
I have always been someone that has tried to look at the brighter side of
things. I have always been able to sit back and objectively view just about
anything. MS has taken a bit of the physical part of me and screwed it up a bit,
but it hasn't taken a single bit of me away. I'm not the same person that I was
when all this began, but rather a better person now because of this wild
journey, and I am without a doubt a lucky man.
An ironic fact is that when I was 18 years old I contracted Mono (lucky strike
#1) and I was born in El Paso, Texas (strike #2). Of the four main clusters that
have been identified, I am from one of them. I also know of the metal smelter
that is mentioned as a possible link. Could that be the reason I have MS? I'll
probably never know if being born and raised in and around El Paso was the cause
of my MS. What I do know is that if it were a contributing cause or even the
cause, it's all in my past and there is nothing that I can do about it.
Is there a "strike #3" for me? Who knows, but what I do know is that I live in
the present and I can only be concerned with what lies ahead for me. The past is
to be remembered and not dwelled upon. My past played a part in the person that
I grew to be, but it's not what defines the person that I am right now. The
person that I am comes from the people, experiences, and the events that have
shaped my life.
When my son was born I was able to spend a good amount of time with him as
chaotic as it was with work. Then when I had to stop working, the time I spent
with him increased, and he should grow up to be a better and more caring man
because of that, and I am a lucky man for that. I am able to tell him everyday
of my pride and love for him and that has never waivered. What a lucky man I am
to have him as my son.
My wife has never had the attitude of "boo-hoo, look what we lost" but rather
the attitude of "ok, how do we deal with it?" She has never waivered in her
commitment to me or fighting this disease, it has just made her stronger which
in turn makes me stronger. She has always had a sense of humor that matched mine
and she still picks on me every chance she gets, just like I do to her. My wife
and I both look at the future knowing that things will be fine no matter what is
thrown at us. We laugh as much as possible and enjoy every day together because
we are blessed. Again, what a lucky man I am to have her as my wife.
Concerning MS, I have never had time for the mental issues; I just try to deal
the physical ones. I'm sure that somewhere in the back of my mind all the
emotional things were there at the beginning, and they may have even manifested
into a thought or two, but if you can examine the big picture carefully, you
learn just to deal with it. If you break your arm, deal with it, get it fixed,
and move on or life will pass you by. If a problem seems to be overwhelming,
break it down into a few smaller ones and take it all one step at a time and
then it will be easy to deal with. Time won't stop and wait, so you had better
not waste it and keep up with it.
I have never gotten angry since no one did this to me, and what purpose would
that serve? I certainly have no anger knowing that I grew up in El Paso, Texas
and it being the fourth cluster. I certainly know where the metal smelter is,
maybe if I were to walk over and kick it I might feel happy, or I may just break
a toe. Nobody has positive proof that any metal smelter could have triggered or
caused my MS. For me personally, it really doesn't matter.
I have never been sad because I have MS, why should I, since I already have all
that I need. MS has changed my life a bit but I didn't loose it. As far as I
know, the road I may have traveled without having MS could have killed me. I'm
happy for what I have and that's a lot.
Regarding denial and guilt, I've never denied that I have MS, especially after
seeing the proof, and it was more of a relief just knowing what was wrong. Guilt
never even entered my mind, except when I had that second piece of chocolate,
As far as depression and fear, the only depression that I have ever been in was
when I would dig a hole in the ground. I can say that I learned a long time ago
from my father how to get out of any hole that I may have dug myself into. As
far as fear goes, there might have been a bit of fear from not knowing at the
beginning, then an hour later we had our plan set out and that was that.
Nobody has time for all of this BS, it's time to move on, and it's time to live.
To quote one more person, my uncle Mike was very fond of telling you to "piss or
get off the pot" and that still holds true today.
Even to this day, the only fear I have is of my wife, and that is a good thing
if you can believe it. As far as the other five stages of loss or whatever you
may want to call it, nobody has time for all of that crap: the denial, anger,
grief, depression, and guilt - whatever with that.
This is the road that I am going down and it's not quite the road that I would
have chosen, but that's alright with me, just bring it on because I can deal
with it. MS isn't killing me and I am a stronger person for
going through all of this crap. There's that old saying that "what doesn't kill you
makes you stronger" and from where I stand today, I have to agree with that.
Where I'll be 10 years from now, I have no idea, but I'm sure that I'll have fun
every step or limp of the way.
I have known so many people that constantly live in the past and not in the
present. They always talk about the "what if's" and "should have's" and not
where they are or where they are headed. They can't get it in their heads that
you have to live in the present and to plan a future. Just going through the
motions and existing can never come close to living your life. Regret is and has
always been their best companion and it acts like a blinder that never lets them
see what their life could be like. They never could look forward and see what
the future could have in store for them other than more regrets.
In regards to the future, just remember that future plans are made to change and
are not written in stone, so be flexible even though your body may not be. Don't
dwell on the past, remember it and learn from it because there is a future just
waiting for you. The future can hold so many possibilities and they can sure be
wonderful. Your past is just that, plan your future, and live in the present,
this is what I try to do with every step, every moment, and every day.
There's a saying in that "a positive attitude may not solve all your problems,
but it will annoy enough people to make it worth the effort!" Having MS and a
positive attitude can create a bit of fun.
I still count my blessings everyday because my wife still see's me as her
husband, nothing more and nothing less. She see's the very same man that she married, the very same man that she picks
on every day, and the very same man that she loves.
I am blessed that my son see's me as dad and to him all this other stuff is just
another part of life that can happen, but none of this has ever changed the fact
that he loves me and simply see's me just as dad.
I am blessed because I can tell my family that I love them every day and I see
that love returned in how they look at me, talk to me, and treat me. Everyday,
to my constant amazement, all of this gets even better. Now what more can a
person ask for than a family that loves them?
All I can say is that I am blessed and...
...I am truly a lucky man!