From 0 to 60: Driving and Hydrocephalus

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Teen with hydrocephalus drivingBy Krishna Jagannathan

I remember how excited my friends were in high school when they first got their license and I also looked forward to the day when I would be able to drive. For most teenagers, driving is an important rite of passage. They are no longer dependent on others to take them where they want to go. It takes a long time to become proficient at controlling the car, observing the rules of the road and exercising judgment about the appropriate response to various scenarios in the driving environment, even for an individual without hydrocephalus. Having hydrocephalus adds a whole layer of complexity to the learning process. Granted, some people with this condition do not have any major medical problems and are able to lead a normal life. Others vary in the degree to which their ability is impaired. So what do you do to prepare your teenager for this milestone given their medical condition?

Most people with serious medical conditions can buy ID bracelets which list their condition and provide information about how to contact their doctor in case of an emergency. It had never occurred to either me or my parents to get one for me because I had my last shunt revision at 11 and fortunately never had to deal with medical complications resulting from a shunt malfunction since. But it is something I would strongly recommend for teenage drivers, even if they have had no past history of medical complications. Some of the symptoms of incipient shunt malfunction can actually mimic alcohol intoxication. If a problem occurs while the teenager is driving, which causes them to be pulled over, the police may delay getting prompt medical help because they misinterpret the cause of the behavior.  It’s critical for the teenager to exercise good judgment by restricting alcohol intake or completely abstaining before driving to avoid such misperceptions by law enforcement (and legally, teens should be abstaining anyway). This requires open and honest communication between teenagers and parents about the teenager’s role in managing their condition.

Most of my challenges in driving have come from the side effects of the condition rather than medical issues.  Hydrocephalus typically affects visual acuity, coordination, judgment and concentration, all of the skills which are necessary to drive. Just learning how to coordinate between controlling the steering wheel and applying the accelerator or brake can be a daunting task when you have poor motor skills.  I initially learned to drive on a stick shift, which was the car I would eventually be given to drive.  Therefore, I had to coordinate shifting gears along with managing the other controls of the car. For someone like me, this was the most frustrating part of learning to drive because I did not have good coordination to begin with and seeing my friends master driving so easily affected my self-confidence. Since most cars today come standard with automatic transmission, this does not pose a problem for the teenager driver.

I still have problems judging distance or relative speed, which is a critical skill, especially in changing lanes. It always amazes me to see drivers effortlessly merging across two or three lanes of traffic on the freeway within seconds because it’s a skill I have never mastered. I never drive in the leftmost “fast lane” on the freeway even if I there is a long distance to my destination, because I need a lot of clearance and time to change lanes and I am afraid that I will never be able to change quickly enough to get into my exit lane. If distance perception is a problem, the best solution is to maintain extra following distance between vehicles as well as teaching teenagers to constantly check their rearview mirror while driving to be aware of what is going on behind them.

I have trouble parking, even in clearly demarcated lanes, because I can’t judge the distance between my car and the next lane once I am in the car so I end up parking closer to one side or the other instead of exactly in the middle of the space. I generally avoid parallel parking, again because I can’t accurately judge whether or not my vehicle can fit into a given space. It also takes me longer to reverse out of a space when there are cars parked anywhere behind me because I can’t judge how far away they are from the back of my car. As of 2016, it is mandated that all new vehicles come with a rearview camera, which will certainly help with this issue, but of course, not everyone has the finances to buy a new vehicle, nor would they want to give a new car to someone who is a beginning driver or has difficulty driving.

When I first learned to drive, I had a lot of problems with navigating by myself. All I had was a Thomas Brothers physical map. So if I wanted to get from one point to another, I had to chart my route out on the map first, then write it down and commit it to memory. People with hydrocephalus can sometimes have difficulty telling the difference between left and right. On a map, of course, left and right are correlated with cardinal directions: north, south, west and east. If I am figuring out how to get somewhere, it isn’t enough to tell me to go west 2 blocks and then turn right, for example because I have no sense of what “west” means in terms of where I am currently located.  Navigating while driving doesn’t allow a lot of time to process and convert directions to an easily comprehensible form. Of course, now smartphones have GPS so route guidance can tell you when and where to turn and even re-direct you in case you miss the turn. It’s definitely a worthwhile investment to have some form of automated navigation system in the vehicle that the teenager will be driving.

Hydrocephalus can also affect memory. Even though I have lived in the same city all my life, except for familiar routes which I travel on a daily basis, I still have trouble navigating without GPS even if I have been to a place frequently before in the past . Before I go somewhere for an appointment, I usually do a preview drive the day before. While GPS may get me to the actual address, I still need to familiarize myself with where to park, how to get from the parking area to the place where my appointment is and anything else that may interfere with finding my way, like construction activity. Anything that deviates from my expected route creates problems for me so I always have to plan ahead.  I am currently self-employed, but it would have been a serious obstacle in my career if I had to for work and was expected to drive in new cities to get to a conference or a client meeting but didn’t have the time to prepare in advance.

Driving at night is one of the skills a teenager should be comfortable with before getting a license. Just getting experience behind the wheel is insufficient because hydrocephalus can affect vision. For a long time, I used to avoid driving at night, because I could not see very well. Many high-end vehicles now have an array of technology available to assist drivers, including adaptive headlights, adaptive cruise control and braking, blind spot monitoring and lane departure systems. (Car and Driver new night driving features.) In time, these may be standard features in all cars, allowing teenagers with hydrocephalus to experience the same freedom and mobility as their peers without experiencing undue anxiety, as I did.

Compounded with problems judging distance and depth, I was afraid of making mistakes because I could not accurately distinguish the road in front of me. At first, I had to have someone else with me in the car. Of course, that is not always possible on a daily basis. Over time with continued practice, I am fairly comfortable driving along routes I normally travel in the daytime. It does impact my social life, though. I can’t meet friends for dinner or other social activities at places that fall outside my travel radius unless they are willing to come and pick me up. I also can’t offer to drive other people at night, so most of my socializing has to occur during daylight hours. I have learned to accept these limitations but there are other options available.

Programs for vision therapy can help people who have difficulty with depth perception, seeing things in 3D and other associated visual problems that are common in those living with hydrocephalus. If you choose to pursue vision therapy for your child, the therapy should be started with children with visual deficits well before they begin learning to drive because the same problems affect other areas of their lives like reading and athletic ability. Although having hydrocephalus can make learning to drive more challenging, there are many resources available to help a beginning driver deal with the limitations of their condition and to allow them to live as normal a life as any other individual without those limitations.

Krishna

Krishna is a new guest blogger for the Hydrocephalus Association. She is private tutor, a mom of two beautiful children, and an adult living with hydrocephalus. We are excited to have her share her ideas and experiences through our blog.

 

15 Comments for : From 0 to 60: Driving and Hydrocephalus
    • ruth Garcia
    • November 10, 2017
    Reply

    Thank you so much for this article. It has helped me understand my daughter and her reluctance to drive. I think she needs to learn to drive. We have had to push her. She was doing well with me and a driving instructor. Her permit expired and she has a new one but has expressed no interest in driving again. She was doing so well. She tells me she is nervous and I tell her the only way to overcome is by practice, practice practice! She is 22 years old and was diagnosed with hydrocephalus at the age of 18 months. A complication of her premature birth. She has had several shunt surgeries in her first 4 years of life. She did well until she was 16 yrs. old at which time her 12 yr. old shunt failed and the doctor performed a Endoscopic Third Ventriculostomy. Basically it is a hole made in the bottom of the ventricle to let the fluid drain, thus negating the need for the shunt. When we are driving she does seem to have difficulty judging distances and gets confused using the turn signal. I thought it was just her but I now understand that is a difficulty of HC kids. You have helped me so much to understand her. How can I encourage her to keep driving without being a nag?

    • Peggy
    • October 19, 2017
    Reply

    Hi: I have a son who is 12, who loves computers and learned to drive by using the x box one playing with the racing games with a steering wheel and shifter with gas brake pedals for the floor. He had his first shunt vp at 6 mths. then again a year and half later a revision. Still on the same shunt now 12 years. He has brown belt in jujitsu working towards his black belt. He has reading comprehension difficulties, has a grade 3 learning skill in grade 7. He learns orally when read to, answers all questions correctly, but has trouble reading on his own. His strength is through pictures and oral, video communication. His automotive knowledge is unbelievable. Learned through u tube and watching shows ie: Gas Monkeys Garage, Top Gear, Road Kill etc.. the list goes on. But very street smart and very aware of his surroundings. He can’t wait to get his drivers licence. He was wearing glasses to correct his lazy eye, now no longer needs them and has 20 – 20 vision. His hand and eye coordination improved greatly by using the x box one with racing games. Thank you for your article it gives me great hope!

    • Sallie Parker
    • May 31, 2017
    Reply

    Thank you for your article. We adopted our daughter with hydrocephalus. She is18 and learning to drive. She can’t tell where the center of the road is and stays too close to the yellow line. Is there something I can do to the car that will help her with that

    • Rebecca Perry
    • September 20, 2016
    Reply

    I am 35 and I am attempting to get my licence. I have very similar problems as far as memory and directions and coordination. I have been through driving school twice and am currently being helped out by friends. It is so frustrating but I am not going to give up. I finally gave in and booked my test for the 2nd time (I failed my first test a number of years ago and gave up) This time I am not going to give up!

    Do you have any suggestions on getting around these issues?

    • Sheila
    • August 13, 2016
    Reply

    My son aged 28 is desperate to learn how to drive. He has hydracephalus ( no shunt). He has no confidence that he will be able to as he has the classic symptons of judging distances, concentration and motivation. It was interesting to read your statement and given me the confidence to inspire him. Thankyou

    • Pallavisree Vasanth Tambraparni
    • July 11, 2016
    Reply

    Hi krishna,

    Nice to meet you. My name is Mrs. Pallavisree Vasanth Tambraparni, and I also have hydrocephalus and was diagnosed at 12 years of age. Now as an adult at 39, I had severe headaches, blurred vision, vomiting. dizziness, trouble with balance and other symptoms. My cognition is pretty good. In April2016, I had to have she shunt tubing replaced and then the shunt valve in my head replaced. Two surgeries in one month. Right now, I am able to do some things around the house like folding clothes, washing dishes, wiping the counters, wiping the appliances, loading the dishwasher, unloading the dishwasher, transferring cooked food into containers, but I am not able to cook yet. The thing is I still get headaches. Sometimes they are bearable, other times they are not. Sometimes, I wake up with headaches, other times, the headaches keep me up at night. I take medications for my headaches and I use cold compresses and tiger balm. Sometimes they help, and sometimes they don’t help. I want to start working again. I was working as a contractor for xerox, as a data entry specialist, and my contract ended in the middle of February.
    My husband is afraid to let me drive. I do have a drivers license, but he does not want me to drive. Is it okay for me to drive?
    What is your opinion on this?
    Please let me know

      • Peggy
      • October 19, 2017
      Reply

      Hi Pallavisree:

      Get the xbox one and try driving with the games need for speed, fast and furious. get the steering wheel with the gas and brake pedal for the floor. It will help with your hand and eye coordination. My son’s coordination improved greatly with it.

      Regards,
      Peggy

    • David
    • April 27, 2016
    Reply

    Krishna, it is so nice to read your blog. I will be 70 years old this year, had my H diagnosis and shunt placement operation 3 years. My recovery is coming along but not fully there yet. I was seen by neurologists for 5 years before I obtained the H diognosis 3 years ago at NYPrespetetianHospital. The symptoms were screaming out: total loss of balance, falling all over the place, H gait, worst of all – declining cognition. I was a software entrepreneur for 25+ years and built a very successful company with very large customers – and I had to retire because I lost my ability to think critically. I took all of the neuropsychological tests which proved my IQ declined 25% or so.

    I would love to connect with other H patients and hear about their experiences, treatments, and recoveries.

    My neurologist tells me some people recover in a few weeks and some are not diagnosed until their 80s and still undergo the shunt implant. These have not been my experiences.

    David

    • Karen Newport
    • April 19, 2016
    Reply

    Krishna,

    Thank you for your article. I am a mom of a 20 year old who has had a variety of challenges in his life, from being a preemie, having open heart surgery at 3 months, being diagnosed on the Autism Spectrum at the age of 4, to finding out at the age of 14 he had hydrocephalus. His surgeon performed a third ventriculostomy and he has recently been released by his surgeon. I am realizing more and more that I have been focusing on the Autism diagnosis and maybe I need to look more into the effects of the hydrocephalus. My son is very bright, yet struggles in many ways. We hope that one day he may be able to drive, yet we are very hesitant. Your article mentioned there are many resources available for individuals with hydrocephalus. Would you be willing to share some of those? My son struggles with executive functioning, self-motivation, self-starting, spatial perception. He is currently enrolled at a junior college and taking 2 courses, and although he is doing OK, I am very concerned that he does not present the skills necessary to live independently and maintain a full time job. Thank you for any information you may be able to share!

      • Anjie
      • February 15, 2017
      Reply

      Hi Karen,
      I just came across this organization and was reading people’s experiences. I’m 29 and had hydrocephalus diagnosed at age 7, but had apparently had it in since in utero, was misdiagnosed and was treated for several years prior for scoliosis, which I apparently did not have. This was followed by 14 shunt revisions and some nerve damage from an issue with one of the revisions.
      I have often thought when reading and hearing about autism, that I would have been diagnosed with it had it been a prevalent diagnosis earlier on in my life, especially when I remember my behaviors as a child and adolescent. I think autism is usually diagnosed when other known neurological disorders are not present. I know there are ranges of autism, but I have always been extremely sensitive and reactive to loud and/or unexpected noises and prone to extreme emotions. I was extremely withdrawn as a child, socially disinterested, and still now have trouble being around people for too long. Bright lights hurt my head and mood..basically super-over stimulation, and flashing lights are a nightmare. Too much wi-fi around me is a problem. I get super emotional over music and other people’s (and animals) sadness, anger, physical pain, joy, loss, whether in person or on a screen. I’m also really sensitive to chemicals and unhealthful foods. I get lost going places Ive been before and then have embarrassing panic attacks. I’ve had a slew of mental health diagnoses and learning disabilities since adolescence, but I’m beginning to think hydrocephalus, especially when present without treatment for a long time might have caused all of these..eccentricities and many more.

    • Stacy G.
    • April 5, 2016
    Reply

    Thank you so much for this article. I have a 12 year old daughter with Hydrocephalus and my husband and I have been discussing this topic alot lately since it is almost time for our daughter to learn to drive. I am so worried about her memory and coordination affecting her ability to do it. Thanks so much for the insight and helpful tips!!

      • Peggy
      • October 19, 2017
      Reply

      Hi Stacy:

      Get the x box one with the racing games, my son is 12 has a vp shunt, he’s doing fabulous. It really helps alot with there hand and eye coordination with regards to the roads. Purchase the steering wheel with gas and brake pedals for the floor.

      Regards,
      Peggy

    • Lisa
    • April 5, 2016
    Reply

    I have hydrocephalus but decided not to drive as I take tablets at night for the headaches and they make me drowsy.

    • Marcia Nannarone
    • April 4, 2016
    Reply

    Great article. My daughter has many of this issues and we use some of the techniques you nention. I just wish friends,and family would understand.

    • Hannah Samarripa
    • April 4, 2016
    Reply

    Thank you for writing this article. I’m a 21 year old pediatric brain tumor survivor with aquired hydrocephalus and an abdominal shunt, which was surgically inserted in me at the age of 14. My peers were all in the process of taking driver’s ed classes while I was in recovery, which has set me back a few years from them. Although I did take a community course not long ago, managed to get my permit, and was even gifted a decent used car, not being able to get myself anywhere (work, class, doctors’ appointments, friends’ places, etc) by myself has been difficult on my family and myself. I’m the oldest of 5 children, so naturally my parents have their hands full raising the little ones. Aside from transportation I can do most things on my own. I do feel bad I have to rely on them to help me with something most people my age have been doing since high school, but I have to keep trying. My goal is to pass the road test soon and move in with my S.O. this summer while working to afford tuition in the fall. It’s been a long time coming. Thank you again for raising awareness!

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