Thursday, November 26, 2009

My MS Story Chapter 19- Measuring the Immeasurable

Laboratory mouse
Image via Wikipedia
Because I participated in a clinical trial in 2005 - 2006, I have an appreciation for the life of a lab rat. OK, that’s a bit of an exaggeration. I took part in the trial of my own free will, and I got to go home almost every night. Never did I sleep on a bed of cedar shavings, nor did I drink from a bottle suspended on the side of my cage.

But, like a lab rat, I was given a substance that I officially did not know the composition of. I was poked and prodded and measured and tested and treated again and again for a period of two years. At times I felt as if I was in a maze, so the comparison has some merit.

Despite all the trips to Worcester and everything that I was asked to do, I never felt overwhelmed by it all. In fact, I was thrilled to be participating in this experiment. The buzz of activity associated with the trial made me feel that I was fighting back against MS. At least I was doing something. Furthermore, since I was pretty sure I was on the trial drug and not the placebo, I knew there was at least some possibility that I could be winning the battle with MS. The fact that I was contributing to scientific knowledge about MS was not lost on me either.



But how could we tell if the trial was working? In situations like this, it is the nature of engineers, scientists and doctors to try to quantify their observations. It's not enough to say that a patient has MS for example, or even to say that a patient has Primary Progressive MS. We need to measure the patients’ capabilities so that we can assign numerical values that describe just how bad their MS is. Throughout my life I've been as guilty of this need to quantify as anyone. I see the world so much more clearly when I can describe it with numbers.

In this clinical trial there were two primary, numerical measures of my disability. These two assessments were called the EDSS and MSFC tests.

EDSS


Expanded Disability Status Scale

This is perhaps the most widely accepted MS disability metric. A completely healthy patient scores a zero. A patient who has difficulty walking more than 200 meters scores a 5.0. Someone confined to bed but still able to eat and communicate gets a 9.0. Death by MS scores you a 10.0. This is one of those rare situations where a perfect 10 is highly undesirable. When I started the trial my EDSS score was a 6.5. Today, my EDSS score is an 8.0.

MSFC


Multiple Sclerosis Functional Composite

This is a three part assessment that measures walking ability, hand dexterity, and cognitive skills. The walking test was a simple 50 meter timed walk down the hallway. The hand dexterity test measured how long it took me to place 9 little round pegs into 9 holes (don’t worry, there were no square pegs, although on some level that would have been appropriate). The cognitive test was very interesting. Give it a try yourself. Here's how it worked.

A CD player read off random digits between 1 and 9, at a regular and relentless pace, pausing about 3 seconds between each number. My job was to add the previous two numbers in my head and verbally give the correct answer to Roberta, who was keeping track. For example, the red numbers below are the ones that the CD player read to me, and the black numbers are the answers that I gave. Remember, the red numbers were read off at a constant cadence, with a three second pause between each one. It was during this pause that I would do the quick addition in my head and give my answer.

1
5
6 (because 1 plus 5 is 6)
3
8 (because 5 plus 3 is 8)
9
12 (because 3 plus 9 is 12)
4
13 (because 9 plus 4 is 13)
2
6
7
9
7
14

And so on. This went on until 30 or 40 numbers had been read to me by the CD player. I scored very well on the test, but I hated it with a passion. It required a lot of concentration to avoid becoming confused. If I hesitated even a little the damn machine didn’t care and just kept shouting out numbers at me without mercy.

In addition to the EDSS and MSFC tests I was also given a bajillion of those general neurological examinations where you are asked to complete tasks like following the neurologists finger with your eyes, or using your index finger to alternately touch your nose and his hand as fast as you could, etc., etc. I had several of those wonderful MRIs. Before each one I would secretly pop a couple of Valium to counteract my claustrophobia. I was given one spinal tap during the trial. The three spinal taps that my local neurologist had given me over the years were relatively painless. This spinal tap doctor (not Peter) was a butcher. He kept poking and poking without hitting the spot he was looking for. Each poke sent an electrical shock up my spine. I shiver just thinking about it.

And then there was the blood testing- always the blood testing. I was tested every time I showed my face at the hospital. On those days when I had infusions, I was tested before and after the infusion. I was a virtual blood spigot.

My disease had progressed without interruption beginning when I first noticed my left foot slapping on the treadmill many years earlier. Then something most peculiar happened. After my first pair of Rituxan infusions the disease progression stopped- dead in its tracks.
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Monday, November 23, 2009

My MS Top 10 Lists

The Top 10 Reasons Why I Hate MS (at least my version of MS)


10. Accessibility problems in general, bathrooms in particular. 


9. MS costs too damn much money. Most years I spend enough out of pocket money on medical expenses to exceed the 7.5% of AGI required to claim medical expenses as a tax deduction, even after insurance payments are taken into account.

8. Because this is a progressive disease, sometimes I don’t know what it is I can’t do until all of a sudden I can’t do it anymore.  I spend a lot of times on the sidelines watching people take part in fun activities.

7.  I miss all the good things that come with working, including income; sense of accomplishment; sense of being engaged in worthy endeavors; spending time with customers, vendors, and coworkers who are some of the nicest people I know.

6. It’s hard to stay healthy and maintain good body weight when I’m so inactive.

5. I miss outdoor activities like snowmobiling, ATV riding, camping, and actually walking in the woods when I hunt (I still hunt from my wheelchair). No thanks, not interested in handicapped skiing.

IMG_1122
4.  I am completely reliant on technology. If a disaster struck (nuclear war, asteroid smashes into the Earth, Yankees win another World Series) how would I survive?

3. I hesitate to talk about things in the distant future, because the future is so fuzzy for me.  When others talk about their long term hopes and dreams, I don’t participate in the discussion.

2. So many people- my wife, my kids, many others- need to go out of their way to help me. I know they don’t mind, but I’m bothered that I must ask them to.

And the number 1 reason I hate my brand of MS is…

1.  No known cause, no disease modifying treatment, no cure.

The Top 10 Silver Linings of Having MS


Let me be perfectly clear about this- MS sucks! But my life has changed so much due to MS, and some of that change has been for the better.  It's been a one step forward, ten steps back process.  Here are some of the steps forward:

10. I have time to keep up this blog.

9.  I’ve met so many wonderful people I would have never otherwise met: people with MS, medical professionals, people who just care.

8.  Lifetime, complementary hunting license and state-wide doe permit.

7.  I can now justify the “3 movies at a time” option at Netflix.

6.  Wheelchair accessible tickets for Red Sox, Patriots, and Celtics are so much easier to get than normal tickets.
Fenway 03
5.  I physically cannot clean a bathroom, rake leaves, or vacuum the house- three things I hated to do anyway.  Please, do not forward amazing new discoveries that will allow me to do any of these things again.

4.  I’ve become a better person in several ways. I’ve had to adopt Zen perspectives like “living for the moment” and “mindfulness” that I should have adopted anyway, but probably wouldn’t have if not for MS. I keep things in perspective better now. I don’t sweat the small stuff as much.

3.  I get preferential treatment wherever there are long lines: amusement parks, museums, boarding airplanes, etc.

2.  I’m out of the corporate rat race.  I run a lot of “if I had it to do over again” career scenarios in my head.  If I had a do-over, I doubt I would choose the corporate life again.  I missed out on my calling, whatever that was.

And the number 1 silver lining of having MS is…

1.  Handicapped parking.  Enough said?

106/365 uno, dos, tres, quattro, count 'em cin...

For those of you with MS, what are your top reasons to hate MS, and what are your silver linings? 
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Thursday, November 19, 2009

My MS Story Chapter 18- Mobility aids, who needs 'em?

A day when you first incorporate a new mobility aid is a milestone day indeed, but not in the way you might think.

Sure, as my disease has progressed and my abilities have diminished, I’ve employed assistive devices that are more and more, well, assistive. So looking at the big picture, it would seem reasonable to say that the use of increasingly elaborate mobility aids correlates with increased disability, and that’s not a good thing, so mobility aids are a bad thing.
 
But this would be a mistake.  Although mobility aids are markers of disease progression, they are not causes. In fact, they are allies in the war I’m fighting. In every case, when I’ve first adopted a new mobility aid, I’ve thought something along the lines of, “This is really cool. I’ve needed help for so long. Why didn’t I get a (cane/crutch/scooter/wheelchair/sexy nurse) sooner?” These have all been happy days, like Christmas, or at least like Root Canal Appreciation Day.

The sad days have been those days when I realize that I can no longer do something that I’ve always done in the past, but that sadness has never been the fault of a mobility aid.

So rather than use a phrase like “Mitch is confined to a wheelchair,” it would be appropriate to say “Mitch is confined by MS,” or even “Mitch is liberated by his wheelchair.”


If you read my post on Judy the Physical Therapist, you may recall that when I visited her for the first time I was using a wooden cane to help with walking. One of the first things Judy did, in an act that I characterize as picking the low hanging fruit, was to grab a pair of demonstration forearm crutches, adjust them for my height, and let me try them out. Wow! What a difference.

These crutches were an improvement over the cane in two ways. Look again at the photo of my wooden cane, above. Notice that the connection to my arm exists only at my hand. This is not a very rigorous connection. It’s the weak point of the whole arrangement, kind of like that little piece attached to each leg on the underside of a folding table. If the piece is locked in position, then all is well. If you break that link though, the table leg folds, whether you want it to or not.

Now look at the photo below of the forearm crutches. They link up with my arm in two locations. My hand connects in a similar manner as with the wooden cane, but there's a second connection point further up on the forearm. So using even one forearm crutch is already much more stable than using a cane. The crutch feels like a natural extension of my arm.

The other improvement with the forearm crutches is obvious- there are two of them. Your body makes contact with the earth in not two places, not in three places, but in four places. Think about the stability of a bicycle, versus a tricycle, versus a car.

Another nice feature of the forearm crutches is that you can let go with your hands and the crutch doesn't fall to the ground, as depicted below. This frees up your hands for whatever activity you need them to do.

Quick aside:  How is a fulltime wheelchair user able to stand for these photos?  Well, because of the spasticity in my legs I am able to stand for a few seconds as long as I can hold on to something for stability.  I can’t move my legs (take a step) anymore, even with both crutches.  Spasticity is not all bad (just half bad). 


The same day that Judy introduced me to forearm crutches I went to a medical supply store and purchased a pair. Initially I would often use only a single crutch, to leave my other arm completely free, and, well, frankly to appear less disabled. A person using a single cane or crutch has some difficulty. A person using a pair of forearm crutches is a cripple, or so I thought. Over time though, I naturally gravitated toward the added stability that came with using two crutches instead of one. This migration was due both to overcoming my feelings of conspicuousness and to simply needing more support as my condition worsened.

After just a couple of weeks with the forearm crutches I realized that although they gave me a lot of added stability, they did not address the issue of fatigue. I still could not walk very far without my legs becoming too weak to continue. Luckily, I knew just the device I needed for those longer walks. I had rented one a year earlier when I toured Washington DC. It was time for an electric scooter.

I did my due diligence (as those of you who know me personally can imagine) and found the ideal electric scooter. Insurance paid for most of it. I also bought a portable ramp so that I could get the scooter in and out of my minivan. We removed the minivan’s middle seat for this purpose.


I also purchased an attachment for the back of the scooter so that I could carry my forearm crutches with me. I would use the scooter to get from point A to point B if these two points were sufficiently far apart, and then use my crutches at the destination. For the longest time though, I did not use the scooter in my house or at my place of work. I’ll write about those transitions in a later post.

If a cane implies some difficulty, and crutches shout out “cripple,” then what does a scooter say? How about old, miserable, frail, overweight, mentally challenged? These are not nice terms, I know, but actual connotations nonetheless. That’s why I always made an effort when driving my scooter to engage people that I encountered, to show them that I was none of these things. Well, I was a bit overweight.

For the next three years I was a crutches and scooter kind of guy. In May of 2005 I was using my crutches 95% of the time and my scooter 5% of the time. By July of 2008, just before I got my iBOT wheelchair, those percentages were reversed.

Thursday, November 12, 2009

My MS Story Chapter 17- There Will be Blood

Roulette Wheel 08
Image by marc e marc via Flickr
I was entrusting my healthcare to complete strangers, and these strangers didn’t even know what substance they were pumping into my veins. Maybe it was a powerful immunosuppressant, or maybe it was sugar water.

I’ve always been a bit of a risk taker. You probably know several people who’ve had laser eye surgery. Maybe you’ve even had Lasik yourself. Back in 1993, before laser eye surgery was available, I allowed an ophthalmologist to reshape my corneas by hand using a procedure called radial keratotomy. (Dr. Werner, wherever you are, I hope you eventually had your medical license reinstated. You got a bum rap.) As you can see, accepting risk in return for potentially significant rewards was not exactly out of character for me. By the way, I’m now on year 16 of not wearing glasses or contacts. I hated glasses and contacts. I hate MS even more.

Roberta, Kathy and Peter, employees of UMass Memorial Hospital, would become very important people in my life. Over the coming years I would see more of them than I would of anyone other than my wife and kids or coworkers, and certainly more often than I would see my local medical team.

Kathy, the trial coordinator and a nurse, was my primary point of contact and eventually my good friend. Within five minutes of meeting her, she was poking around my arms and hands looking for a vein from which to extract a blood sample. Because the trial protocol required so much patient health data, Kathy became bloodthirsty. I wonder just how many vials she filled over the next couple of years- too many. This blood collection adventure didn’t go smoothly at first.

Kathy was not an experienced phlebotomist. She understood the basics of taking blood samples and was technically qualified. Clearly, however, this was not her area of expertise. To complicate matters, I don’t give blood easily. I've managed to frustrate even the most veteran phlebotomists over the years. My veins are just not visible. If you determine where there might be one, by feel, the vein is likely to roll out of the way when you poke it with a needle. After a couple of months, however, we identified a magic spot in my right arm where Kathy could almost always strike red gold on her first try.

Roberta was also a nurse. She administered two tests called the MSFC and the EDSS (more on them in later posts). These were the primary tests used to evaluate the condition of the trial participants by measuring feats of strength, dexterity, vision, and cognitive ability. Roberta was a lovely lady- pleasant, engaging, and always professional.

Peter was the medical director of the MS clinic. He was both an MD and a PhD, as this was a teaching hospital. Peter was absolutely brilliant. He was a renowned leader in the field of MS treatment, but remained down-to-earth and unassuming despite his lofty credentials. He even asked that everyone refer to him by his first name.  I wonder sometimes what sort of doctor decides to specialize in MS. Why not choose a less depressing field where you occasionally cure patients, like maybe oncology?

On June 2, 2005, on my fourth visit to Worcester, I received my first infusion. In my previous post, My MS Story #16, I described my serious reservations about sticking with this trial for 2 1/2 years if I suspected that I was on the placebo instead of the trial drug. Before my first infusion I had studied the side effect profile for Rituxan, which was well documented. If I was on the trial drug, all was well. If I was on the placebo, all bets were off.

During the first infusion my blood pressure slowly dropped and my body temperature steadily increased. These were both classic Rituxan side effects. In fact, as I later learned, if my temperature had risen any a higher the nurse would have suspended the infusion. On the drive home I spoke with Kim about whether or not this was conclusive evidence that I had just received an infusion of Rituxan. I wondered, “They wouldn't give me a placebo that would raise my body temperature, just to throw me off track, would they?”

Later, before we had arrived home, I developed a significant headache. I didn't remember reading about headaches as a side effect. When we got home I pulled up the information I had on Rituxan. How had I missed it? One of the primary side effects of the initial infusion of Rituxan is a headache. I was inching ever closer to concluding that I was on Rituxan. There was just one more piece to the puzzle.

With Rituxan treatment, any reactions you experience during the first infusion are typically not present at the second. Two weeks later, on June 16, 2005, I had my second infusion. Sure enough, I had zero side effects. I was convinced. Hooray! I was getting the real thing. I had some hope of stabilizing this damn disease.

Stabilization was the ultimate goal of this treatment. Suppressing the B cells in my immune system, which is what Rituxan was designed to do, might slow down or even stop the progression of my disease. There was no reason to believe that any of the damage already done could be reversed by Rituxan. With a progressive disease like MS, the primary goal is to halt the damage- to stop the bleeding. If you can do this, you can buy time while you wait for some medical advancement that will repair myelin and re-grow axons.

That's all I was doing by participating in this trial. I was just trying to stop the bleeding.
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Thursday, November 5, 2009

My MS Story Chapter 16- The Clinical Trial Begins

Experiment
(Photo credit: jeff_golden)
In early 2005 I was accepted into the Rituxan clinical trial, or so I was told. I kept waiting for word on when I should show up in Worcester for my first appointment, but the months kept going by. The start of the trial was perpetually imminent.

Finally, in May of 2005 I got the call instructing me to report to the UMass Memorial Hospital in Worcester, Massachusetts for my first appointment. I was excited about the trial, but not in the way that some people get excited about prospects like this. Let me explain. Oftentimes, when people who are in dire straits see a rare opportunity, they invest emotionally in a positive outcome. They seize hope and hold on tightly.

“I know this will work.”

“Fate has brought me here. Everything happens for a reason.”

“This is the answer to my prayers.”

I'm not finding fault with people who operate in this manner. It's just not me. I had a modest level of optimism because the pharmaceutical company was investing a lot of money in this trial. Some project manager or product manager or vice president had stuck his neck out to advocate for this very expensive experiment. The fact that a board of directors was allowing the expenditure of precious corporate assets made me feel that this trial had a better than average chance of success.

I was enthusiastic and cautiously optimistic, but I knew that no trial in the history of clinical trials had ever produced a treatment for PPMS.

The protocol for this trial was double-blind, placebo-controlled. The placebo-controlled part, at least in this case, meant that two thirds of the participants would receive Rituxan and one third would receive a placebo. The double-blind part meant that both the patient and the treating physician (and his/her staff) were blind to whether the patient was receiving Rituxan or a placebo. Only a few nameless, faceless (at least to me) data analysts would know who was who.

Each trial participant was making a 2½ year commitment that we would not undergo any other MS treatments and that we would show up in Worcester between one and four times a month for treatments and examinations. For me, it was a two hour drive to the trial hospital, each way. This was a huge commitment.

It bothered me that I might forego all other treatment options, as unpromising as they might have been, while receiving nothing but a placebo for 2½ years. This was a frightening prospect, especially since I had a progressive disease. Left untreated, I could only guess what my condition would be 2½ years down the road. Those of us who participate in clinical trials are often heralded for our unselfishness. We risk our health for the cause of science, but let's examine that concept a little more closely.

If I knew that a certain placebo-controlled clinical trial would produce results beneficial to mankind, then that would be one deeply personal decision for me to make. However, in the clinical trial world it is very unlikely that patients’ sacrifices will contribute to significant medical progress. Most clinical trials fail, especially clinical trials for PPMS. Scientists are quick to point out that even failed trials yield important scientific and medical information. Okay, I'll concede that point, sort of.

My health and well-being may be worth sacrificing for significant medical progress. However, there is no way that my health is worth sacrificing for tidbits of scientific information that may or may not ever make a difference to anyone. Furthermore, my health is clearly not worth sacrificing simply for the financial gains of a pharmaceutical company.

But evaluating all of this from the front end of a trial is daunting. You don’t know anything. You don’t know if this trial could be THE trial. You can’t possibly know if you’re making a huge mistake. You just can’t anticipate what your world will look like 2½ years down the road, with or without the trial.

There was one fact that made my decision to go forward easier, though. I simply had no better option.

So I came up with a plan. I decided to break the rules and make every reasonable effort to ascertain whether I was on the placebo or the trial drug. If I determined that I was actually getting Rituxan, I would stick with the trial until the end. If I determined that I was on the placebo, that would be another story. I would secretly reserve the right to withdraw from the trial if I felt that I was missing out on some other opportunity to fight the disease.  This might mean that I would be a quitter, something Mom and Dad and the President and Jesus told me I shouldn’t be. Nevertheless, this was the only plan I could live with.

So how in the world could I outsmart these brilliant doctors and figure out if I was on the trial drug or a placebo? I couldn't figure it out with certainty, but I had some ideas.

Because Rituxan was already being used for cancer patients there was a lot of documentation about its side effects. I learned that when somebody gets their first infusion of Rituxan their blood pressure typically drops and their core body temperature typically rises. Sometimes they have a more severe respiratory reaction that forces the infusion to be temporarily stopped. On subsequent infusions there are usually no side effects at all. So my plan was to see if I had the side effects on infusion one, but not on infusion two, which would come only two weeks later.

As a friend of mine said to me, “You need to be in this trial because it might make Mitch better, not because it might further scientific knowledge. If you happen to contribute to a medical science in the process, then that’s just a bonus.”

Selfish? Perhaps. Do I regret taking this position? Not one bit.

In fact I did withdraw from the trial before its completion- not because I thought I was on the placebo, but for a completely different reason.
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Sunday, November 1, 2009

My MS Story Chapter 15 – Judy the Physical Therapist

In February of 2005 I developed a mysterious pain in my right shoulder, and I just couldn’t shake it. My doctor recommended that I see a physical therapist. Her people made an appointment for me with Judy. By a cosmic stroke of luck, Judy was also the rehab clinic’s MS specialist.

I told Judy about my sore shoulder, but frankly she could not have been less interested, and rightfully so. Here was a real, live MS patient in front of her- a patient at that critical juncture where walking was beginning to fail. Furthermore, I had never received the services of a physical therapist since my diagnosis. That meant that I was a physical therapy MS virgin, gift wrapped and left on her front doorstep. Judy tactfully explained to me that I had much bigger issues than a sore shoulder, and she was right. The shoulder pain soon cleared up on its own, and, well, I still have MS.

At one appointment Judy asked me if I had driven myself to the clinic. I sensed where she was going with this seemingly innocuous question. I was taken aback, maybe even a little insulted. I replied that I was fully independent, and of course I had driven myself to the appointment; thank you for asking. She pleasantly but firmly indicated that she was surprised, given how weak my legs were (speaking pleasantly but firmly is a required skill for a physical therapist).

After that session I began to pay closer attention to my driving. Holy crap! I was taking some serious shortcuts. Leisurely drives along the interstate were not the issue. The issue was with city driving, where I frequently had to move my right foot from gas to brake and back again. I was actually compensating by using my right hand to grab my pant leg just above the knee and assist my right leg in these brake-to-gas-to-brake transitions. I hadn't even realized I was doing it. Judy was right again.

As luck would have it, there are ways to drive a car without using your legs. The first step was to get hand control driving lessons, which Judy set up for me. It was a bit odd at first, but I got used to it. I simply needed to practice enough so that the connections in my brain that had previously traveled to my right leg for driving were rerouted to my left hand. After a couple of weeks it became automatic. The next step was to find a company who would install the hand controls into my two vehicles for me. I did find one, at $1,400 per vehicle, and no insurance help.

One day I received a letter from the State of Maine, indicating that I needed to take a driver's exam with my new hand controls in order to continue driving. Judy had forewarned me that an exam would be required, but I hadn’t really thought it all the way through. I was expecting to have it both ways. I was expecting to drive with my feet when they felt strong enough, and with my hands when they seemed like the best option (hand controls are set up so this is possible when others drive my car). Whose business was it anyway how I chose to drive?

It turns out that it was the State’s business. Once I started the process of acquiring hand controls there was no turning back. As far as the State was concerned I had to get my new license for hand controls and surrender my old license. These people were treating me like I was disabled or something. Come on.

I showed up at the Department of Motor Vehicles at the appointed time. I then sat down among the 16-year-olds and their parents to wait for my name to be called by an examiner. My parents did not accompany me.

Fortunately, this examiner was unlike the gentleman who failed me on my first try as a 15 year old. He seemed human, and quickly put me at ease. He was the special medical examiner. If you had suffered a stroke or had a limb amputated then you needed to demonstrate to this guy that you could still function adequately behind the wheel, in order to get your license back. Or, if you have a progressive disease and needed certain driving adaptations, like I did, then you had to pass muster with this guy.

The examiner shared a story with me as I drove around the streets of Portland, more deliberately than I had ever driven these streets before, or since. A few weeks earlier a person who had lost his license due to mental illness was taking the driver’s exam in order to get his license reinstated. The examiner asked the driver to parallel park. As everyone knows, this is easily the most stressful part of the driver’s exam. The driver struggled with the task and began arguing with himself in two different voices, as if the examiner was not even present.

“You idiot! Can’t you even park a car correctly?”

“Shut up. Leave me alone. You’re not helping things.”

“You big dummy. You are going to fail this test, aren’t you?”

“Shut up!”

And so on…

The mean spirited personality was right. The examiner was compelled to fail this driver. Breaking that news to somebody who had already been through hell and back (or not quite all the way back) was not fun. I guess, in the grand scheme of things, MS was not the worst driving handicap that I could have.

I passed my driving exam without any difficulty. For a while afterward I would still use my right foot to temporarily operate the brake or the gas pedal, usually if I had something else to do with one of my hands. But now I can’t remember the last time I touched a brake or gas pedal with my feet. In fact, since I was issued my special driver’s license I have not operated a vehicle unless it was equipped with hand controls (I learned that you can rent cars this way).

My advice to anyone who is indecisive about adaptive driving controls- don't be.  They will only make your driving easier and safer, and they don't take long to get used to.

Thanks, Judy, for helping me out so much back in 2005. You are the best. It’s probably time for me to come see you again. I’ve got a whole new set of issues for you to look at- you lucky girl, you.




Below is a quick hand controls tutorial.  Pictures were taken in my wheelchair accessible minivan. 

Legend


A: Primary control lever
    I push this lever forward for brake and down for gas

B: Right hand turning signal controller
    I need to be able to operate the blinkers with either hand, whichever is least busy at the time

C: Spinner knob
    Also referred to as the suicide ball. If you get in an accident you don’t want this to impale you. Allows me to easily operate steering wheel with one hand.

D: Horn


E: High/low beam switch


(click on photos to enlarge)

IMG_1174A
View from driver’s side door

IMG_1179a
Driver’s view

IMG_1176
View showing the connections at the pedals.  Note that the connections do not interfere with normal operation of the brake and gas pedals.