Its taken me a while to decide to fill out this part of my profile. So here is my story, MS is affecting my life, but it does not define who I am.
I am first and foremost a proud dad of two of the best sons I could have ever wished for (eventhough they drive me nuts sometimes). I use to be able to do things with them in the outdoors (hunting, fishing, boating, camping, and hiking to name a few). But my MS prevents those as of about 2017. My sons are my legacy and will continue to make me proud long after I am gone.
I am a very proud member of my local volunteer fire department and have been since 1991. I was a department executive officer from 1993 to 2017. I have been a line officer (fire command position) since 2000. I voluntarily stepped down as captain at the end of 2018 due to my MS preventing me from being able to do the job the way I wanted the job to be done.
I started having symptoms in 2010. My symptoms started with blurry vision in my left eye. I went to every eye doctor and specialist in my area. All they found was damage to my optic nerve but they did not know what caused it. Eventually I got an appointment with a neurologist. But I had to wait a few months for that appointment.
While I was waiting for that appointment I had my first major relapse.
On Monday when I got up my pinky finger on my left hand was numb. Tuesday my pinky finger on my right hand was numb to. By Friday I did not have any feeling in either arm from my shoulders to my finger tips or in either leg from my hips to my toes.
While this was going on (and since I enjoy woodworking) I decided to make a new entertainment center to pacify myself and to distract myself from falling apart. I dropped a full sheet of 3/4 oak plywood on my left foot. I did not realize I completely ripped off my big toenail until I took off my shoe at the end of my day and my sock was blood soaked.
After telling the doctors office about that, I got an appointment with a brain and cervical spine MRI the next day. The MRIs showed 3 old and 3 new brain lesions and 3 new lesions on my cervical spine. They immediately started me on 3 days of IV steroids. Soon after I started taking Avanox. I was on that for the next 4 1/2 years. Then I started to have weakness in my left side and started to have side effects that were to much to deal with. Then I started taking Tysabri and have been on it ever since.
In 2018 I hurt my back (for the 5th time since 2001) this time I needed to have surgery to fix the herniated disc. Surgery was in January 2019. During recovery I had a MS flare up and my left leg would not work, and I struggled to walk. This caused me to fall near the end of January. Unfortunately when I fell I re-herniated the disk worse than before surgery. This caused a redo of the back surgery in March 2019 and I am still struggling with the left leg not working well.
I am still active in my fire department and doing what I can. But I can not respond to emergencys any more.
Since I enjoy woodworking and I air conditioned my garage a few years ago so I can do it during the summer. I carved myself a custom cane that looks like a firefighters pick head axe and use it to walk. I get stopped all the time by people who want to see it. I have even been stopped by security when I was walking to my infusion appointment at the hospital. This is my attempt of being broken with style.
MS is slowly taking away the things that make me who I am, Making me constantly redefine who I am. But I am fighting it, I refuse to go quietly, and surrender is not an option.
I have been the first person off the first fire engine on scene of more bad incidents than I can count. MS is a tough opponent. But it dose not compare to responding to a message from dispatch for: the block of houses on fire. I am proud to have been there do defeat that fire, I am never going to let MS win. No matter how many times it causes me to trip, stumble, limp, or fall.
MS will knock me down, but I will always get back up!
To me MS is a fire that needs to be put out and I will never stop or I will die fighting until MS has been extinguished...
The year 2020 has been rough for almost all of us. But for me there is a silver lining. With all the cayos that going on my doctors managed to do back surgery #3 before the virus shut everything down. I now have two titanium rods and six screws holding L4-L5-S1 vertabra together while the bone graphs fuse it all together. Its been over 4 months of recovery so far. My back is finally doing good, I have almost no pain and no pain running down my legs. My MS did not handle the 4 plus hour long surgery very well. The first month of recovery was more about getting my MS under control. I had no feeling or strength in left arm or leg and no coordination in my right arm. Two days after surgery both hands got stuck like T-Rex hands and I could not even feed myself.
Right now I am stuck with Lhermittes sign, which shuts off my left leg when I look down. This makes walking on uneven ground, steps, curbs and a bunch of other every day things a challenge. I need to walk up to what ever I need to step over, stop, look down to see where it exactly is, look back up, then step. If I step in a low spot in the yard, or my foot does not quite go where I expect it to I usually fall. I cant move fast enough to recover from the miss-step. Since surgery I have fallen more times than I can count...
But I am getting better at learning how to deal with it and I have only fallen once in the last two weeks.
But like I have said before, MS will continue to knock me down but I will ALWAYS get back up (even if I need to call for help and I have had to do that a few times during this process).
Eventhough this site is being shut down, we all need to keep fighting. If at least one of us keeps fighting then MS will eventually be defeated!