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Ed Clabaugh
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                                                            My Story

 

Hi, my name is Ed Clabaugh and I live in  Mechanicsburg, Pennsylvania. I have a C2 Spinal Cord Injury. I was 69 years old when this injury occurred.  My injury is the result of a one-car accident on Route 81 near Frackville, Pa., on July 31, 2002. I was working for Enterprise Rent-a-Car part time, driving cars from point A to B and back. I had just been to New York to drop off a car and was returning home when my accident occurred. I was retired from the Quaker Oats Company of which I had worked for 32 years. I then worked for Enterprise Rent-a-Car for 9 years. That is the day my life and my family’s life changed dramatically. My wife had been retired for 16 months when this occurred. We had just been on vacation and were planning another vacation sometime in the fall. We were deciding where we wanted to go. Life was at its grandest for both of us. Both retired and both had a part-time job.

 

My long stay in a place worse than “hell” began that day for my family and me. For two years I was left lay in bed with not even passive range of motion to my extremities. I was very sick in that time frame. I was destined to die, but hung in there. My family was by my side everyday supporting me.

 

I have had people come into my home and say ”what’s the point?” meaning why are we doing therapies on me when obviously they think I will never get better. When do we say enough is enough? Let me live out the remainder of my days by watching TV and looking at the four walls? Having a C2 SCI automatically labels you as being “not worthy” of staying in this world. My wife certainly did have other plans for me.

 

I have been to a few doctors who say, “I do not ever see you walking or breathing.” They did not give me any hope whatsoever. Only my family.  I ask, “Are there any additional therapies I can do, such as breathing exercises.” Their response is “no, there is no end goal.” Well, yes there is. Everyone must have hope that around that next turn; something new will come out to “cure the spinal cord injuries.” It will happen, I may not see it, but it will happen one of these days and hopefully spinal cord injury will be in the same category as a broken arm or leg. You must be ready for the breakthrough. Be healthy, do your therapies aggressively. Don’t ever let anyone tell you that you are not worthy. If your doctors won’t give you a regimen of therapies, follow what Christopher Reeve did. This is what I did. It will get you started.

 

I live in my own home that I moved into in 1971. It has been modified for me. My home is small compared to the size of homes today. I had to live in my family room for 1-1/2 years until my addition was completed. I did not have a shower in that timeframe. I would get bed baths. My bowel program was also done in the bed. Today, I have a shower chair that enables me to have a shower every day and my bowel program is also completed in this chair. What a difference the addition has made to my life. Before the addition, I only had one way out of my house in the event of a disaster. Today, I have three. 

 

It has been a very long road to travel. I was destined to tube feed for the rest of my life. I spent time in a rehab facility in the Middle West. At our monthly meetings, I was told, “Mr. Clabaugh, you will be on tube feed for the rest of your life.”  I would aspirate 50% or more of everything that I swallowed.  I was not eating, but my secretions were abundant and I would have pneumonia from time to time.  Once in a while a nurse would let me have some ice and even that liquid would aspirate. Well, today I am eating anything I want. From soup to steak. I had a laryngectomy to enable this. This where they take out your voice box and connect everything from your throat to your stomach. I cannot aspirate at all anymore. The decision was all mine to do this. I have always loved to eat and could not face the rest of my life without food when there was an option for me to eat. I do have an UltraVoice plus device implanted into my teeth that enables me to speak. I have speech lessons every day, which consist of over articulating my words. I have become quite understandable. My mouth would not open very far due to not eating, so I then had to have a speech therapist massage my mouth and then open my mouth as far as I could. This was not enough. She then ordered me a TheraBite device that helps to stretch your mouth opening. Today I am maintaining with this device. My mouth is now opening just fine. 

 

I was also told that I would never breathe on my own again. Well, I just returned from Cleveland, Ohio where I had the diaphragm pacer implanted. This was on January 10th. I returned home the 11th.  Everything is going well. On February 7th, I went to Baltimore, Maryland and met with the doctor who did this surgery. His name is Dr. Raymond Onders who is with University Hospitals Health System in Cleveland, Ohio. He, at that time, “turned on” my pacer and I am now beginning to wean from the ventilator. This is a huge goal for me. Being on a ventilator for long periods of time will take its toll on your body and shorten your life span. I have been on the ventilator for 4-1/2 years.

 

I just received the RT300-S cycle ergometer purchased by the workers comp insurance company for me to have the use of this device in my home. Previously, I would go to Kennedy Krieger Institute in Baltimore, Maryland to ride the bike. A few of the things this bicycle can do for you is relax muscle spasms, prevent or retard disuse atrophy, increase local blood circulation. Maintain an appropriate body temperature, and maintain or increase your range of motion. At the beginning the workers comp insurance company had denied this. I appealed this decision.  I have the best care possible and do not waste any money or supplies that are not needed. I want to walk and I will do whatever it takes to get me to this point.  It may never happen, but I am being given the chance. 

 

No one has ever suggested doing these things. It has been my wife who keeps me motivated. She constantly does the research and finds the things I need to rehabilitate my body. 

 

I will tell you that this is not easy, but I stay very focused and do all of my therapies every day. Most of the time I take Sunday off, but if there is nothing to do or on TV, I will end up doing them also on that day. There are times that if it would not be for my family, I would have given up, but they have supported me 100% and keep me going. I went from doing everything for myself, taking care of my home, taking care of my vehicles and working to having everything done for me. I am working to change this and hopefully someday I will be self-supportive again. I have been home with my wife for 3 years now. We have a little girl cat now whose name is Annie Sarah. My cat, Sarah, died on September 13th, 2006 that we had for 9 years, so we decided to get another kitty. We got her on April 6th.  She is the most loving cat and seems to tell you every day “thank you” for taking me home with you.  

 

 I go out to eat, go to get my haircut, go to the grocery store/shopping with my wife. I am going to a local flower show soon. I will be going to a concert in July also. I may go to Pittsburgh this year to see a Pirates game. I am from the Altoona area and try to go up there twice a year for the day to see some of my family and friends that I grew up with. I live my life as best I can and each day I try to get a little bit more normalcies to my life.  I have joined the Spinal Cord Injury support group in our area and have made some wonderful friends who also support me. 

 

Getting good quality, aggressive care is hard to find in our area.  We needed to go out of the state to find good spinal cord injury care. Since going to a doctor in another state, I have been started on the Restorative Therapy Program that includes the Easy Stander, electrical stimulation and the RT300S bicycle. We now have an excellent team of doctors, some from our area, and one from Cleveland and some from the Baltimore area.  

 

Most doctors want the 5-minute fix where they can spend limited time with a patient, give them a pill, and then move on to the next patient. You need to have a good doctor who specializes in spinal cord injury and who will be aggressive in the care they give you.   Someone who is dedicated and wants to see you fulfill your potential instead of telling you that you have no potential and you should be in a nursing home or an institution. Both my wife and I would like to change this mentality. You can go home. It is a lot of work, but you can do it. Don’t just sit your life away. Do your therapies, become involved in your local spinal cord support group. Learn what others do for themselves. They can help you and you can help them. Most of all do not give up.  

 Call us at  717-766-7161 or email below!