I was nervous about my first appointment. I was not sure what to expect. No one really told me about this service, so I had no idea what we would do to get started. The only thought I had in mind is that I would learn the lessons fast, so I did not have to spend even more money on them than what I already planned to. Delete to All I knew at the time is that it felt good to know that my money was going toward something that would help me regain freedom. I had dumped a lot of money into surgeries that did not work, but this time I knew it was going toward something I knew would be successful.
Right on time at 8 am, the door bell rang and I invited in my instructor. After a few pleasantries, we got to work right away. The first part was the $800 evaluation. The evaluation consisted of simple math problems, cognitive responses to questions, memory assessments, coordination testing, and visual testing. I understood the reasoning behind the tests. It was to ensure that people who could not see properly or think coherently, would not be driving on the road. The company not only dealt with disabled people, they also dealt with people who suffered brain trauma, and they needed to make sure they were able to pass the simplest tasks. However, I knew that I was okay and I could feel the money sliding out of my pocket for nothing.
After a quick assessment and review of my results, we were ready to go practice. The instructor drove us to a vacant parking lot that was close to home to start the training. She went over the three major car parts that were involved in driving with hand controls. The first was the pedal block. It was a piece that attached to the floor of the car that blocked the gas and the brake pedal. This provided a blockade for your foot, so it does not accidentally hit the gas or the brake pedal while the car was in motion. The second was the steering knob. The steering knob is a round knob about two to three inches in diameter that is connected at 1 o’clock in the steering wheel. This bulb was to be used by your right hand to steer the car. On the left side, toward the driver window was a bar that stuck out from the steering wheel. Pushing this bar towards you with your left wrist was acceleration and pushing it down toward the floor board was the brake. It was as simple as that. I just had to get used to the controls and their response time.
It had been a very long time since I drove at all. It felt that some of the chains connected to me and my chair were breaking. I started slowly in the parking lot, making stops, starts, right, and left turns. Playing video games for years must have paid off because the instructor stated that I was the quickest learner that she ever had. She was so confident in my ability that she let me drive on the road and then out on the highway. I did very well, only mistaking the push down for brake for acceleration. After two hours passed, we arrived home. I thanked her and told her it felt good to get behind the wheel. She stated it would only need to take one more lesson before I was ready to test with Penn Dot to obtain my credentials for driving a vehicle with modifications. I was thrilled comma and Amanda was happy with the enthusiasm I showed toward the whole program.
The next day I had to learn how to parallel park. This scared me. I had never learned how to do it properly in the past. I flunked twice on my original driving exam, but the examiner gave my license to me anyway.
I waited in the car in the same empty parking lot by my house while the instructor set up cones to simulate a parking spot. After she was done she joined me back in the car. I think she sensed my nervousness, and told me she would work with me until I got it right, even if I needed to add another lesson.
After an hour of pulling forward and backing up, I was becoming very agitated. I needed to stop, we were not making any progress. I was extremely frustrated at myself. Something as simple as parallel parking was blocking me from obtaining my hand controls and freedom.
I entered my house in a very foul mood. Amanda knew that this lesson had not gone as well without asking a question, and being as smart as she is, she did not. I spent the night trying to find a tutorial video that was simple enough to understand how to park with ease. After an hour of searching I found a video from a driving instructor on YouTube that seemed to make it super simple. I was determined to try again with the new information I learned.
The next week, we were once again in the instructor car, with the cones set up. I told her,”Watch this!” I pulled up next to the cone as the instructor in the video said and backed up just a little. I then turned the wheel to the right one time and backed up until I could see the cone in the center of the window. I then followed the next step of turning the wheel all the way to the left and backed into the space while watching the back cone. Those instructions worked like a charm, and I was more than delighted. I could also see the astonishment on the instructor’s face. She asked, “How did you do that?” I told her I learned it from the video and showed her. After performing it four more times flawlessly, the lesson and training were done.
We drove to and visited Total Mobility Services. We went over everything I was going to need for my car and ordered all the parts I needed for installation. With everything in hand all that we had to wait for was the date Penn Dot would test me. The earliest option was three months later.
Life went on during those three months, nothing had changed and the only thing on my mind was completing the trial at Penn Dot and regaining some of my freedom. I couldn’t drive with a regular pedal due to complications with my right ankle, but if I could just pass this test, I would be able to drive with my hands. I was more than delighted by the thought.
The day came, and right on time the instructor was at my door. We were both excited and nervous. She stated that she believed I would pass the test. As we arrived at the testing center we put the car in line. There were only two others that were in front of me. I watched nervously out the window as I saw once one car having a lot of trouble parallel parking. Sensing my nervousness, the instructor told me, “That is not you. You know how to do it.”
After twenty minutes the examiner came to my car and the instructor left. The examiner never had seen hand controls before, which baffled me, but she stated if I could prove I could drive with them it would be good enough for her. So, with that statement the test began. I pulled up to the stop sign that was on the track and used my turn signal to make it to the area of parallel parking. It was time. I knew if I could do this, I could do the rest. I took a deep breath and followed exactly what the video showed me. I slowly pulled up, then pulled back a little from the cone. I whipped the steering wheel around like I did before in the empty parking lot, and to finish, I backed up a little bit. There it was, I did it. I centered the car. I was so relieved, and I knew my instructor was, too. The examiner stated, “Well I can see you know what your doing. Let’s go out on the road. road.”
We traveled on the road for five minutes and came back to the parking lot. For the first time in a long time, nothing went wrong. Nothing went wrong. I repeat nothing went wrong. It was a long time since nothing had gone wrong in my life.
After finishing the test I parked and we went inside to fill out the necessary paperwork to place the hand control restriction on my license. Both the instructor and I felt jubilant. I looked at her with sincerity and stated, “Thank you for giving me some of my freedom back.”
With those words we went home, and within the next two weeks the controls were installed on my car.
I would like the reader to take away from this entry about getting over your nervousness or doubts. I pushed off the hand controls for a long time because I thought I was going to get better. Once I realized I was not I doubted that I could pass the test again considering I never did. The only thing we can do is to keep pushing forward and try to regain our freedom that the obstacles in our life take away.
I was truly excited to get the hand controls. It meant that I did not have to depend on everyone driving me everywhere due to my right ankle being in pain all the time. I was relieved and joyful when the controls were put on. It was worth every penny.
I know it has been a long time since I made an entry. I will explain that later . . . just know I had been going and continue to go through a hard health struggle once again. I was having serious doubts about continuing this blog. I wanted to end this blog on a high note. Now I do not know if I can. However, I know more important than ending on a high note is that we keep fighting. That also means telling my story. If I can touch one life with my story, all of this was worth it.
This is the video on You Tube that taught me how to parallel park in minutes. It is good for anyone who has trouble parking or is about to obtain their license.
It took many weeks and even months to go through, understand, and appeal the Explanation of Benefits to the person that was helping me. It took even longer for them to be reprocessed and to receive a check that I could put towards the medical bills that were piling up.
Between the bills, needing to recheck each and every one of them to make sure I owed that amount, I was starting to feel exhausted and stressed out. To help Amanda I was also handling all of the finances, bills and investments. Anything at home that didn’t require an exorbitant amount of movement became my responsibility. Some chores had already been my responsibility but now became physically draining.
The pain kept increasing, and my pain manager increased mydoses of narcotics. They certainly helped, but they made me more dizzy and drowsy giving me less and less time to handle anything at home. This put more pressure on Amanda to get things done, and to continue working to support both of us.
During the coherent times, when the bills were taken care of and my home duties were done, boredom was setting in. Our house is not the biggest, I spent most of the time in a chair in the living room which is small. As each day passed the wall my chair was against seem to lean forward over me and the wall on the other side with a small aquarium on top of it seemed to move closer and closer. My living room was starting to feel like the size of a Cracker Jack box. Before things got worse I knew I had to have some type of change, but I was not quite sure what it was going to be, until Amanda found the answer, that I already knew but had forgotten from a suggestion Brad gave me many years ago.
Amanda was browsing medical articles on the internet and found an article on hand controls for your car. She looked at me and said, “You need these, so you can get out of the house when you’re not feeling drugged or tired.” It took a minute to process, the aspect of regaining my freedom would be incredible. I spent most of the past years having to rely on her, parents, or friends to get me out of the house. It sounded all too grand. I looked at the article and I told her I would start doing research right away.
The next day, as luck had it, I found a mobility store only two miles away. I wanted to gather information on hand controls and the cost of the items. After fifteen minutes of waiting for the salesperson to get done, he came over and ask if we needed help. I explained to him my situation and he walked over to a stand and offered me a flyer. He then asked what car I drove. I told him a compact car, he looked at me and the car outside and stated I would have to buy a new car. He then excused himself and went to the back, but before he did he told me I would have to pass registration for Penn Dot to use the equipment and stated there was a place in Hershey. He gave me no name and he did not have information on how much it would cost to install at his own location. The balloon of freedom almost popped.
Once we got out to the car Amanda and I agreed we were not going to deal with a person that treated us so dismissively. According to him I needed a new car, I knew he was wrong because I already researched that information. He then only gave me a flyer about the product, and he had no information about training for registration. However, I had enough material to research from the flyer and ask about hand control training, so our effort was not all wasted. All I knew, is I was not going back to them. For a salesperson who works in a facility that sells equipment to disabled people, he did not show any empathy. It was as if he were questioning the genuineness of my disability, considering how he was treating the customers that were 70 or older. It left a bad feeling in my stomach.
I shook the feeling by the time we were home, and took the information that I was able to obtain to start my research. The first thing I needed to know was if insurance would cover any of the costs. The second was to find a school to learn how to use hand controls and learn how much that was going to cost. The third was to find a facility to install controls and show me which ones I needed. Once again, I found myself a purpose. To get back some freedom I lost. It was the only thing on my mind: freedom, and get out of these four walls when I can.
I started my search of hand controls on the internet and found the facility in Hershey they were talking about. I quickly picked up my cell phone and called with paper and pen in hand to take notes. It rang four or five times until someone picked up. The young lady said she did not know much about the scheduling because the person who was supposed to be there was not, but she could tell me the cost was $150 an hour with about an 8 hour course and an assessment of my capabilities of $800. My heart dropped. That was $2000 just to learn how to use the controls! And then the knife went in. She perkily stated, “Insurance usually does not cover this.”
When I hung up the phone, I struggled to breathe. Another $2,000 on top of the $20,000 I paid for out of pocket expenses, deductibles, out of pocket maximums and physical therapy over the last eight years for six surgeries that did not work. I could have cried then and there, but I sucked it up and made my next phone call.
The facility I called was $120 an hour with an $800 mandatory assessment. I felt a little better: at least it was less. Than I called the last facility on my list. Genesis Rehab Services. A wonderful-sounding lady picked up and stated she would love to help me learn controls. She also stated at no cost they would come to my house to pick me up. I thought that was a great advantage. I then asked her for the cost of her services. She revealed it would be $100 an hour with a 4 to 8 hours of total sessions divided into 1-hour daily sessions so the person does not get tired, and there would be a one time fee of $800 for the assessment performed by her. She added she would help with everything I needed and stay by my side until the controls were installed in my car. She then said to get started she would need a doctor’s note and we could schedule the appointment. I told her that sounded great compared to the other ones I heard. I just had to talk it over with my wife and call the doctor to get the note. We both said our goodbyes and with this knowledge hope entered me once again.
Making the phone calls was like a roller coaster, my stomach kept going up and down learning about the costs, but knowing that this company could pick me up, an offer the others ones did not mention, was the biggest plus. I then called my doctor and with no arguments a script was faxed over. For a second I wondered why they had not suggested I get hand controls to help regain my freedom, since they were so willing to write the script, but I got rid of any negative thought and went back to researching companies that could install the parts in my car.
The first company I went to would not do, so I called the second one I found on the list and learned it was also right down the road. When Amanda woke up and went over everything I learned, she agreed it would be quite the expense, but worth it for me and to relieve some stress from her running all the errands. We went to the company that was much different from the previous one. We entered Total Mobility Services and were greeted by a pleasant woman in a wheel chair named Ann. She went over everything: How the installment was done, my options, and even took me out to her car to show me the hand controls in her car. With pamphlets in hand, and a lot more knowledge, she handed me a quote of $1,635.00, which was also not covered by insurance. She agreed with my frustration over why the insurance company would not cover devices to help people regain their freedom, but they did not. I thanked her for all her time and told her when I pass my tests, I will be back.
The research was over, and with a quick phone call to the insurance company, I did learn what I already knew and that was, I was going to have fork over all of the money myself. The government did have a plan to help with the $800 assessment fee only, but Amanda earned too much to qualify for it, but none of the other costs would have been covered anyway.
Ann confirmed that I was lied to when told I needed to replace my car because the other company only sells one type of control and if it did not fit your car they told their customers they needed a new one. She also knew of three people that fell for that pitch. She stated that here at Total Mobility Services they sell all types to fit any car. My heart went up and down as I learned of the costs, and I found myself at a crossroads, do I spend $3,000 or more? I always thought I was going to get better over the last six years. I never did, and after $20,000 what is another $3,000?
With my decision confirmed, I called Susan back at Genesis Rehab and scheduled my appointment…
This was truly the first time I was doing something to regain my freedom that I knew would work, if I tried hard enough. The surgeries were not in my hands, they were in the doctors, but this, this was under my control, and I was going to pass.