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Multiple Sclerosis Centers of Excellence

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My Story, With Some Life Saving Advice

Frank Helenberger -- Athens County, OH

I am Frank Helenberger. I am 56 years old and live in Athens County, Ohio. I was diagnosed with MS while working as a firefighter and paramedic, 5 years after my discharge from the US Navy Submarine Service. I was at the top of my game. There was nothing I couldn’t do. I had a beautiful wife with two lovely children. Who could ask for anything more?Frank and wife Hellen

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 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.

Well, soon I 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 referred me to a neurologist.

Long story short, 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 5 years after my discharge from the US Navy, the last thing that occurred to me was to seek out a service-connected rating through the VA.

I came into contact with Cheryl Johnston, the Spinal Cord Injury Nurse Care Coordinator at my local Chalmers P. Wylie outpatient clinic in Columbus, Ohio. She informed me that MS can be service-connected on a presumptive basis if it manifests to a degree of 10 percent 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.

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.

I don’t believe I am being punished by God for my poor choices in life. I do not believe God had any hand in my being diagnosed with MS. That would make for a cruel and uncaring God given all that happens in this world. There are those who may believe that God controls everything that is in this world. I am not one of them. God has given us a choice and we get through this life with God by our side to help us through whatever happens, if we so choose him.

“It is, what it is”, that’s my philosophy. Just make the best of it and try to help others to do the same. As such, I would like to further share some other issues I have had as a result of my MS. Specifically, the incontinence due to my neurogenic bladder and how to perhaps make the best of it.

Over time, my MS has been further refined to primary progressive MS. My symptoms have only gotten worse over time. There have been others that have come and gone, but most, including the incontinence, are here to stay. I do not have any control, but I do know when the urge presents itself and the urine flows.

I was not immediately aware of the numerous ways to combat this problem until I visited a urologist. This was before I was diagnosed with MS, so I was really at a loss for what was going on. The urologist, Dr. Joshi, introduced me to the leg-bag. What a life changing discovery! I am sure that there are thousands of you that know what I am talking about. There are many different varieties out there. I have found there is very little in the availability of a high quality, efficient, and comfortable leg bag. After literally dozens of different leg bags used, I found the right one for me. I also had to find the right catheter and leg bag straps to make the bag snug and safe. “Safe?” you ask. Let me explain…

As the MS disease progresses, you become less active and your lifestyle changes. Perhaps you don’t walk a lot anymore or even worse, not at all. Due to lack of physical activity in your legs, you may experience atrophy of your leg muscles. Firm and formed leg muscles, specifically calf muscles, are required to hold a leg bag in place so that it does not slide down your leg. Atrophy in my leg muscles had forced me to over-tightening the leg bag straps, trying to keep the bag in place. It took the life-threatening occurrences of pulmonary embolism, and one year later, deep vein thrombosis (DVT) to make me understand that I can’t keep the leg straps too tight. It was like I was placing tourniquets on my legs, one at the upper strap and one at the lower strap of my leg bag, just trying to keep the leg bag from sliding down.

The reason for my pulmonary embolism did not occur to me until after my DVTs were diagnosed in my lower leg. There were two DVTs and they were exactly where my leg bag straps were fastened to my leg. The straps had been too tight, constricting the blood flow beneath them. I have found a solution to this, one that could have prevented these blood clots. It could prevent them for you as well, and perhaps save your life. I now wear my leg bag on my thigh. It is not “strapped on”, but rather loosely “held in place”.

Wearing your leg bag on your thigh is not easy as there is not adequate muscular form in your thigh to keep the bag from sliding down. My solution for holding the leg bag in place on your thigh begins by using wider leg bag straps that are less likely to create a tourniquet effect. Using multiples of these straps, first I fasten the straps together, making a wide strap that will fit around my waist, like a belt. I then apply two more of these straps each to the top and lower strap locations on the leg bag. Using multiples ensures that they will fit around my thigh. Finally, I attach the belt together with the top strap of the leg bag using one more strap.

The bag will now stay put and will not slide down your thigh. The leg bag tubing, that comes attached to the leg bag, is then shortened to make the connection to your catheter. Since wearing my leg bag this way, I have not had any further blood clotting issues. I make sure to allow a looser fitting of trousers or pants around my thigh area so that the leg bag is not restricted, causing back pressure. Back pressure can cause your catheter to become detached.

I am not a representative for any products. I just think you need to know your options. Wearing your leg bag on your thigh could be just the solution you have been looking for. And it could save your life.