Polen Family battles ALS

Stand For Corey. Corey Polen Vs ALS #StandForCorey

Originally started on YouCaring. Moved to GoFundMe due to YouCaring being acquired by GoFundMe.

Hello, my name is Corey Polen. Many of you visiting this page know who I am. However, for those of you that don’t I would like to provide some background. I graduated from Ball State University in 1998 and married my college sweetheart. We built a home in Brownsburg in 2001. I am so blessed to have Jennifer in my life. We have three amazing children. I love being a husband, father, and uncle. I’ve always been active; enjoy working out, swimming, hiking, and coaching. At 40, I was in the best shape of my life. Then it all changed.

In October of 2015, Jennifer and I went hiking through the Tonto National Forest in Arizona. I noticed that my right ankle began to roll on some of the slightest of angles. I found that odd because I was being extra careful not to get hurt in such an isolated location. It happened at least a dozen times. We made our way back and I brushed it off. As a family, we continued to enjoy the rest of our time in New River, AZ. A couple weeks later while walking to work in downtown Indianapolis, I noticed my right calf getting real tight and causing some burning sensation. Over the next couple weeks it progressed to a foot drop. From there I finally, sought some medical guidance. My first of many EMGs was performed. At first, I was told that I had a compressed nerve behind my right knee. It would heal on its own over 18 months. Not too concerned, I was happy to have an explanation.

In February of 2016, I began noticing more weakness in my other leg. I also started getting short of breath when walking around the ½ mile mark. So I sought out a 2nd opinion. After meeting with another Neurologist, another EMG was performed. That’s when I was told the life changing news. He suspected that I have Amyotrophic Lateral Sclerosis (ALS) or commonly known as Lou Gehrig’s disease. ALS is a progressive terminal neurological disease. Over the next year, I went through many other tests and treatments to eliminate every other possibility that could mimic elements of ALS. In March of 2017, there was nothing left to eliminate. The only way to confirm ALS is through a biopsy of your brain after you die.

Let me tell you this, I hope none of you ever have to go through it, but there is nothing worse than telling your spouse and children such horrific news. As a father, my responsibility is to protect and provide for my family. This disease steals that from me.

Generously, many of you have asked about helping us out. Asking for help has never been an option in our mind. We've worked hard all of our life and we have always been proud for being so independent. A trait we want to pass on to our children. Throughout the last year and a half of this disease though, a realization has set in that each day has become more of a challenge than the day prior. The sad part, the disability is just beginning and the rest will be extremely costly. 

My biggest physical change are my legs. It’s difficult to walk, climb stairs, and bend my knees to pick something up. When I fall, it is difficult to get back up. I get some very painful cramps. They were in my legs for several years, but those are minimal now that my muscles have atrophied. My abdominal cramps are the worse right now. I can’t do simple things any more like take out trash, carry in groceries, or mow the yard. Getting dressed is more of a challenge every day. I’m so blessed for the family I have though. Without hesitation they have stepped up but I worry about the future burden they will carry.

Some items down the road that are needed are home modifications, powered wheelchair, mobility vehicle to take me places in that wheelchair, communication devices, and more medical bills (much more). These all can easily run in excess of $100,000. The recent Pete Frates ALS fundraiser states patient care can run upwards of $90,000 a month. If you feel moved to donate in any way it would be greatly appreciated. If not, I’m glad you took the time to learn about our battle.

Now, whether you donate or not there is still something you can do. ALS has had little to no medical advancement since Lou Gehrig announced having it in 1939. A couple medications that on average extend your life 3 months. I wouldn’t even call that a treatment. People like me have no option and often think of the torture we inflict on our loved ones; either by seeing us suffer, or being caught off-guard by a suicide. Some States have a Death with Dignity law; Washington, Oregon, California, and Vermont. Having a mother who died from Colon Cancer at the age of 50, I know all too well the pain and suffering someone goes through with a terminal illness. She was a wonderful mother and I would have supported any decision she made. It’s a lot for a family to observe.

Indiana has created some “Death with Dignity” bills, however, the Republican house has never allowed the bills to progress. The bills are routinely left to die each year, like patients like me. I know this is a controversial topic. However, it is one that needs addressed by our legislatures and citizens. I ask that you reach out to your State representatives here in Indiana, or those in your State and voice your support for a Death with Dignity law for terminally ill patients. These bills have worked very well in the States allowing patients the freedom to choose. I feel all terminally ill patients (including those with ALS) have earned the ability to decide. I love my dogs as well. I’ve made that horrible choice in the past for one. It was hard, but I did so out of love for my dog to no longer suffer. Why does a pet have more options than me? Timothy McVeigh, who killed 168 people and injured over 600 in the Oklahoma City bombing, was put to death compassionately in my State of Indiana. Why does he get to die compassionately? Yet, my State wants me to have a torturous death in front of my children. I don’t understand.

So please, email your representative. Tweet at them (feel free to tag me @coreypolen). Do what you can to help bring some Dignity to those with terminal illnesses. Give us the freedom to make the ultimate choice. 

Here is an example:
I support Indiana’s #EndOfLifeOptions bill for @coreypolen. You should too @GovHolcomb & @Brian_Bosma #StandForCorey www.gofundme.com/StandForCorey

Feel free to share my fundraiser. I’ll use this platform to provide updates, such as, progression, clinical trials I’m on, Death with Dignity law updates, and much more.

God Bless,

-Corey & the rest of the Polen Family


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Corey Polen 
Brownsburg, IN
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