The type of MS (progressive) I have is unlike nature and has
no recurring cycle. It is a steady decline. Looking back the first symptom I
recall was difficulty standing in my John boat. This was in 1999 and now in
2015 I am wheelchair-bound and require a caregiver to get me out of bed and
into my chair. I can no longer pull myself up on my legs. My left hand and arm
mostly are useless. I can no longer grip with my right hand and my right hand
curls up in a ball. As bad as my current condition is I realize it can only get
worse. I want to share how it has progressed over the years. To do that I need
to start out with a little of my history.
I have lived in the Midwest all my life. I’ve held a number
of different types of jobs. I have been a sheet metal fabricator, welder,
drafter and engineer. I started out work in a factory and worked at factory
jobs until the late 80s. That is when Computer Aided Drafting (CAD) came about.
I’ve always had terrible handwriting and this seemed perfect for me because I
could type letters rather than make them by hand. I took a course at Kirkwood
to learn how to use CAD and moved away from manual labor to drafting and engineering.
I switched to work at a manufacturer in Marion Iowa in 1995.
They supported me as I went to Kirkwood to get a degree in Mechanical
Engineering Technology. I graduated in 1999 and weighed 250 pounds and was very
out of shape. I continued working at this manufacturer until 2014.
After I was done with school I had enough time on my hands
that I decided “get healthy”. I became much more active and started to lose
weight steadily. I joined a gym, started biking and jogging. Over the course of
the next few years I lost over 70 pounds and had an exercise rotation where I
jogged, biked or walked every day of the week. During this time I started
noticing problems with my left side fatiguing faster than my right side. I
sluffed it off and thought I’m just getting old and working out a lot so I
should expect these things.
The symptoms grew steadily worse but I still thought it was
just my size and age that were the cause. In 2005 I started getting tingling
and numbness in my left hand and arm. I went to the doctor. He ruled out Bell’s
palsy and a stroke. He wanted to send me for a test where they threw balls to
me in the dark. It seemed a very strange test and I had to sign a sheet saying
I would pay $900 if insurance said they would not pay. I decided to skip this
step due to the insurance aspect. I’m not sure if they would have found MS at
that point. It is very difficult to diagnose so I doubt it.
The tingling and numbness in my left hand and arm improved
somewhat. I noticed my left leg dragging and my left ankle was very weak. I
have rolled my left ankle numerous times playing basketball. So many that I
attributed the weakness in my left ankle to that. Not sure what year I went to
the doctor for this. He sent me to a foot specialist who was pretty much worthless.
He told me I walk funny and that was it. Next step was an orthopedist. He
x-rayed my ankle and found bone spurs. He performed Orthoscopic surgery and
removed a large amount of buildup. This improved my ankle problems but did not
restore it to full functionality. After the surgery I started thinking that
something more was wrong with me and started researching on the Internet.
I was still very active but found I was dragging my left leg
after workout. When I jogged I would often have my left leg locked backwards
and hyperextended. As a consequence I quit jogging and just biked, kayaked and
walked. Some days after exercise I would come home and stretch on the floor.
One time I could not get up. After consulting the Internet I came to the
conclusion I had ALS. There were no real treatments or cures so I kept it to
myself and thought if it gets worse I will go to the doctor.
During this same time frame I found I had difficulty
standing in the water where there was a sandy bottom. I kept falling backwards and
thought to myself this is very strange. Again I just attributed to old age and
I’m sure I was in denial about my overall condition.
There were too many episodes to detail them all but over the
next few years things kept happening with my mobility and mostly my left side.
Finally in 2008 I went to the doctor with my left arm problems. He sent me to a
neurologist. Dr. Krain is my neurologist. Neurologist tested the nerves in my
left arm and hand and found there were no problems. He asked if there were other
symptoms and I said my left leg was weak and I dragged it along with me much of
the time. He set me up for another test. It was called and invoked response
test. In this test you are shown a black-and-white checkerboard pattern that
switches black for white and white for black. Why you look at it they measured
differences between your right and left brain. This was done with electrodes
placed near the back of my head.
While he drew no conclusions directly from this test it did
indicate further tests. They did blood work and an MRI on my head and neck. MS
is difficult to diagnose. The blood test ruled out Lyme disease and the MRI
ruled out a brain tumor. The MRI also showed numerous lesions on my brain and
nerve bundle going to the spinal cord. The lesions and my symptoms together
implied I had MS. Dr. Krain performed a spinal tap. The results from that led
him to conclude I had progressive MS and not relapsing remitting. On June 19,
2009 I received the positive diagnosis that I had primary progressive MS.
Relapsing remitting causes inflammation and this
inflammation causes the symptoms. In the case of progressive MS inflammation is
not the active cause. The lesions themselves remove the myelin from the nerves
and the nerves then die after a long time. This is why progressive MS shows up
late in life. There have probably been decades these lesions have been doing
their dirty work. It wasn’t until I was in my late 40s that the damage was
significant enough to show up symptomatically.
There is no cure or medication for these lesions regardless
of the MS type. There are numerous drugs available that addressed the
inflammation that accompanies relapsing remitting MS. None of these have proven
to be effective with progressive MS and as such are not available.
Another sad reality with my disease is that it has
progressed significantly faster than typical. My original diagnosis led me to
believe I would be able to work and walk with a cane until I was in my late
60s. It has advanced much faster and now I’m in my late 50s. Due to the arm
problems, that I did not expect, I'm no longer able to work. I still am able to
feed myself breakfast after it is given to me. Usually I can lift my arms to
feed myself lunch. By dinner time though my arms are dysfunctional and I cannot
feed myself. I’m almost completely dependent on caregivers. Primarily this is
my wife. I have three adult sons. They help when they can and the youngest
lives a few blocks away and helps me almost every day of the week.
As a consequence of my disease these are some of the things
I can no longer do: drive, bike, walk, fish, kayak, hike or care for myself. Of
all the things I’ve lost the one I miss the most is cooking. I really enjoyed
cooking. Grilling was one of my favorite things to do. A few years ago I bought
a smoker and I loved the smoking meat. I only had it for a year and a half
before I could no longer safely use it. I don’t really miss driving but miss
the freedom that comes with going places on my own.
Now I read quite a bit. I can only read on my tablet or PC
since my hands cannot hold the book anymore. I watch a few hours of TV a day
but really don’t enjoy it that much. I’m still able to go out on the screen
porch and enjoy our backyard. We live in a neighborhood with many mature trees.
We have a huge sycamore and a huge maple in our backyard. My cat Macy joins me
on the porch. For some reason she seems afraid to go out there without me.
Since
2009 when I was diagnosed I have expected my MS to plateau as far as symptoms
go. This has not happened and it just keeps going. I have rarely prayed that I
be spared the disease. I have prayed that I keep the use of my right hand and
pointer finger so I can continue to use my tablet and my PC. Only time will
tell how this progresses. Of course right now it appears very bleak but God is
able. He will either help me physically or provide grace to accept and overcome
these physical restrictions.
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