Navy submarine Veteran describes life with multiple sclerosis

I am Frank Helenberger. I am 56 years old and I live in Athens County, Ohio.

I was diagnosed with Multiple sclerosis (MS) while working as a firefighter and paramedic, five years after my discharge from the Navy Submarine Service. I was at the top of my game. There was nothing I couldn’t do. I had a beautiful wife (pictured above) with two lovely children. Who could ask for anything more?

Then it started…

Weird sensations while running. An electric charge running down the back of my neck, continuing down my back and into my feet. This happened whenever I would bend my head down and look towards the ground. I now know this is called Lhermitte’s sign.

“I started to look for what I needed to do.”

I hid it and didn’t tell anyone. I was afraid of losing my new job as a firefighter.

During a fire, I began to become easily overcome by the heat. While driving the firetruck I began to have difficulty controlling my legs on the accelerator and brake pedals. My feet developed a severe shaking and quivering. I now know this is called clonus.

I began to have a tightness around my chest, like a tightly wrapped cummerbund, but placed a little too high, just above my navel to my nipple line. I now know this is called a MS hug.

Again, I hid it and didn’t tell anyone

I soon couldn’t hide it anymore. I began to completely lose all control of my bladder. I now know this is called a neurogenic bladder. Depends and Attends, you know the “diaper things,” they aren’t perfect, so my secret was out. Something was wrong with me.

Finally, while investigating a neck injury I sustained during firefighting, an MRI was performed on my neck. The doctor took me aside and told me that the neck injury was something that needed to be monitored, but there was something more significant that needed attention.

He told me that I might have multiple sclerosis and then referred me to a neurologist.

After continued denial on my part, and continual research on this MS thing the doctor told me I might have, I finally became overwhelmed by the fact that all my symptoms were those that would happen if I had MS. I checked myself into a hospital, telling them I had MS.

After many cross-eyed looks, I was admitted and discharged a few days later with an official diagnosis of MS. That day was the best day I remembered having for a long time.

At least I had an answer

I had been through most of the grieving processes – denial, anger, bargaining, depression, and now the acceptance. I felt as if a huge weight was taken from my shoulders. I could think clearer now and started to look for what I needed to do.

Being five years after my discharge from the Navy, the last thing that occurred to me was to seek out a service-connected rating through VA.

I met with Cheryl Johnston, the Spinal Cord Injury nurse care coordinator at my local Chalmers P. Wylie outpatient clinic in Columbus, Ohio.

“Make the best of it and help others.”

She informed me that MS can be service-connected on a presumptive basis if it manifests to a degree of 10% disabling or more within seven years after separation from service.

Turns out, she was correct. After filling out all the paperwork and finding potentially corroborating entries in my military medical record, there were no further questions asked. Nine months after submitting my paperwork, and a few appointments with VA doctors, I was granted a 100% service-connected disability.

It’s still difficult

I would not be here today without the support and care I have received at the Columbus VA. Kudos to my nurse, Cheryl Johnston, and neurologist, Dr. Jennifer Mejilla. When I am seen at the clinic I feel as if I am the only person there. My VA care has gotten me to where I am now.

It is still difficult getting through the depression part. That’s still a work in action. But now I know where I stand, and I accept it.

My life as I knew it is gone. It sometimes feels like I can no longer do anything I choose to do; total independence, it is no more. I am no longer the firefighter and paramedic that everyone looked up to.

I was proud of all that. I still am.

Looking back on all that has passed, I find myself mostly beyond the depression phase and well into acceptance. I don’t feel cheated and I don’t believe that it has all been unfair.

“It is what it is.” That’s my philosophy. Just make the best of it and try to help others to do the same.

Read Frank’s full story.

For additional information on MS and Veterans living with MS, please visit VA’s MS Centers of Excellence website at www.va.gov/MS.