Hallelujah! Miss Independent

I feel I have gotten a glimpse of independence.  I have gone from missing independence to Miss Independent, well sort of.  I have come to the realization I need help to regain this sense of freedom.  The most useful tools, my car hand controls and my cane.  The hand controls in my car have helped tremendously.  I have now been able to start physical therapy because I can now get myself there, take my daughter to school, and even enjoy a trip to a small clothing store by myself.  

I had a hard time embracing the cane though.  I have to admit, I did not like the looks and the comments of “Oh! What happened to you? Did you hurt your leg?”  Or, “Why are YOU using a cane?   You are so young!”  Well, o.k. the comment about being young is kind of nice.  I will take that one.  But it was hard feeling everyone was watching, wondering “What does she have?”  I tried it without a cane for a few weeks, but after attempting to maneuver Charming Charlie, an accessory store, without it; I changed my mind.  I think the sales lady was totally convinced I had visited the Mexican cantina next door and had WAY too many margaritas.  I was falling into every other display, trying to regain my balance.  My pre-teen daughter was with me, and I caught a few sympathetic glances from the sales clerk to my daughter.   You know the look, “Oh that poor girl, having to be out with her drunken mother like that”.  The truth is, I don’t need my cane every single second of the day, but I reach this moment in time where my body totally locks up, my muscles are too fatigued to go on any more, and I lose my balance.  My walk becomes more of a slow shuffle of pain.  The problem is I never know when that moment will come.  So now I walk proudly with my cane, because I certainly don’t want to be thought of as the local lush.  

 

This whole experience of my adverse reaction, which in my opinion has now turned into chronic disorder, has taken many things I enjoyed away from me.  One of them is singing.  My voice tires easily with long phone calls and singing simple hymns cause me to get out of breath.  I think this is one of the areas where it bothers me the most.  I miss my weekly practice with our church choir and singing the occasional solo for my church.   My voice has a hard time reaching those first soprano notes that at one time was achieved so effortlessly.  This week my choir did a surprise “Random Act of Culture” at a local mall.  They sang Handel’s “Hallelujah Chorus”, one of my favorites.   I haven’t been able to sing with them the past 10 months, but I stepped out of my comfort zone and pushed my out-of-shape voice to sing along with them.   It was glorious, and for a short time, I certainly felt I was Miss Independent.  Hallelujah! 

Thanks for reading!

Driver's Education

I went back to driver’s education this week.  I had my much anticipated evaluation for hand controls for my car.  The evaluation was done by an Occupational Therapist (OT).  It felt quite strange being on this side of an OT evaluation and treatment.  We swapped OT stories, which did dampen my anxiety, some.

The evaluation was required by the installing company, not the state of Georgia. I found out that my assumption was correct.  There are NO laws in Georgia regarding adaptive driving equipment or training.  So the experience for me in my state may be different from what may be required in yours.  My training required was simply based on the OT evaluation and her recommendation of what I needed to safely drive. 

My evaluation consisted of vision, cognitive, physical evaluation and of course, a driving test.   The whole process took 4 hours, which totally drained me.  I have not had the endurance for much without frequent rest breaks, so this was taxing on my body. 

 

I have never had test anxiety, yet this day I was overwhelmed by it.  The vision test was pretty simple, testing acuity and depth perception.  Which, I have no depth perception and never have my entire life, because of a lazy left eye.  Even though I did not “pass” this portion of the test, it is a deficit I have had my whole life, and I am used to accommodating for it.  

The cognitive test was stressful for me.  I had to remember lists of words, do simple math in my head, comprehend a paragraph read to me and answer questions.  I passed in the “average” range, but it did confirm deficits which I knew I had.  My short term memory and math skills are no longer in their top performance. These are test that I, myself, would give to head injured clients.  It was frustrating that I now could not pass with flying colors.  Thanks Levaquin!

My physical evaluation also did not reveal too many unexpected areas of deficit.  Overall my strength is significantly weaker than it was prior to Levaquin.   My muscle strength (for any OTs reading this) was in the fair plus range proximally.  For those who are not OTs, my hips and shoulders were much weaker than my hands and feet. However, I know from just doing normal activities around the house, such as even typing this, my hands are also weak and fatigue quickly.  The one area that did surprise me was how slow my reaction time was with my right foot.  The OT had a gas and brake pedal attached to her computer to measure my reaction time with my foot, and then with my left hand to see if I could benefit from the change to hand controls.  My reaction with my hand was much quicker and in the safe range.  Because I did not have the movement of the car and feedback from the surrounding environment, I had a difficult time maintaining the correct speed with my foot.  The proprioception in my foot was impaired and I no longer was getting feedback from my ankle and foot where it was positioned.  This also surprised me, because I was not aware that I had this problem. 

 

I also was given the Georgia state written road test.  Good grief, when will the testing end!  The above testing took a total of 2 ½ hours.  The road test was about to begin.  Based on my evaluation, the OT recommended the push/rock hand control with a hand spinner knob used for steering.  After a quick review of how to work the controls, the driving practice began. 

 

I was suddenly catapulted into feeling like I was 15 again, learning how to drive a standard stick-shift.  The sensation of being on those quiet Mississippi country roads with Dad trying to get me to understand how to release the clutch and at the same time apply enough gas came rushing back.  The anxiety and the sweaty palms were included.  The difference here, I am now MUCH older, and the roads are definitely not quiet in the Atlanta area.   I first started in a business parking area, and gradually progressed to divided highway driving.  The driving consisted of many turns, start/stops on inclines, merging etc.  The controls actually require very little pressure and allow my left arm to rest on my knee or on the door arm rest.  The steering knob is used to help with one handed steering.  She originally had it place in the 2:00 position on the wheel and my shoulder quickly became fatigued.  She later moved it to the 5:00 position which was markedly better, but my arm was already so fatigued at that point.  By the end of our drive, I was feeling much more comfortable with it and could carry on a conversation with her while driving. However, my right arm felt like a noodle.   She will give me one more road practice in my own car once the controls are installed.  

I could have never driven that much with my foot, that is for certain, but I was discouraged with how quickly my arms did fatigue.  As I write this, it is 2 days after my road test, and my right shoulder is still quite sore and fatigues even more quickly than normal.  I have come to the realization that long car drives are no longer in my future.  But at least this gives me the ability to take my daughter to school, or run an errand. I am hoping with having the steering knob installed at a lower position, and not having my body so tense from the anxiety of learning something new, I will be able to withstand the driving better.  I also have an option to add in additional arm rests if I need them.  However, I am going to just try what they have recommended for now and see how that works.  They are getting installed on April 11. 

For those that I have spoken to that have been contemplating hand controls, I hope my experience helps you.  I am not going to lie; it can be quite a costly item.  It is not covered by insurance, however it can be applied as a deductible for your taxes as Durable Medical Equipment.   I am sure the cost will highly depend on your state law requirements.  You have to consider the cost of the controls with installation plus, in my case, the cost of the OT evaluation and the amount of training needed.  In my situation, since I still have children dependent on my driving and my husband is out of town a lot, the need outweighed the costs.  I have spoken to some in other states that did not have to undergo such an evaluation that I did, so they only had to pay for installation costs.  Others have told me their state required 10 hours of training, which certainly would make the cost astronomical.   In my opinion I would not get these controls without having someone really show me and train me in how to use them.  In this case, I say driver’s education is a must.   

Thanks for reading!

I Can't Drive 55

Well, it is official.  I can’t drive 55, or at least I can’t unless I have the help of my cruise control.  My reasons for not driving 55 are very much different from Sammy Hagar’s.   My husband has been hounding me, yes HOUNDING ME, to look into getting hand controls for my car.  I am having increased pain and weakness in my right foot.  I keep thinking it will get better, hoping, praying.  However, it has now been almost 9 months of very limited or no driving at all.  The day it really hit me that I needed to give into this request was an early Monday morning.  My husband was out of town, and it was up to me to get my daughter to her school that was 15 miles away.  I got into the car, started the engine, put it into reverse to back out of our garage.  I pressed the gas, nothing, tried again, still nothing.  My muscles just were not going to cooperate.  So I gave it some help by pressing down on my knee with my hand to force pressure on the gas.  Hmmmm, I don’t think this is safe anymore.  I dropped off my son on the way, and FINALLY, I was on the divided highway.  Aaahh, relief for my foot!   I could use the cruise control now.  With the constant pushing of “accel, accel, accel” on the cruise, I finally got the car up to the right cruising speed to finish getting us to our destination of her school.  By the time I got back home, I was in tears from the pain and the frustration.   I called my husband.  “I think it is time for the hand controls”.  Since then I have done little to no driving, and the loss of independence is disheartening.
 

The task of finding out how to go about getting hand controls has not been easy.  We finally found a facility that installs them, but not until I undergo a 4 hour assessment from an occupational therapist.  This therapist is about to go to therapy, a weird change of roles for me.  Early in my profession I too would assess head injured clients to see if they could be deemed safe to be drivers.  Now it is me in that “drivers ed” seat, being assessed for hand controls.  My evaluation is coming up this Friday.

One of the most difficult things has been to find out Georgia laws regarding evaluations and drivers training for such things. Do I need a doctor’s referral?  Will I be required to have a certain amount of hours of training?   We searched everywhere, and could only find laws on PARKING.  So in Georgia, I guess you can drive however you want, but you better be careful where you park when handicapped.  Go figure!  We found plenty of laws for other states, but none for Georgia.  We still are not clear about this. From what we understand, I will need to undergo the evaluation, and then it is determined if I will need further training from that point.  After the evaluation, I will then need a written prescription of what type controls I exactly need.  Then the appointment will be set up with the installers.  I have also called many times to see if a doctor’s prescription is needed with NO returned calls.  I will not be happy Friday, if I get there and they don’t have everything they need to proceed.  This whole process is not very clear cut, and very frustrating. 

 

I am not exactly jumping for joy with the thought of getting hand controls.  I want to fix me, not change the car.  I have said this hundreds of times.  However, for me to become more independent and drive safely once more, I know I need them.  Because without the use of the cruise or the dangerous use of my hand to apply pressure, I just can’t drive 55!

Thanks for reading.