I was Chief Information Officer at Autoland (an LA auto brokerage) where I’d worked for eleven years. I was an accomplished ballroom dancer. My wife (Nancy) and I have been married since 1989. I have a boy (Jacob) who was 6 and a girl (Samy) who was 3 at the time this occurred. You can read about my family here.
With no prior indication of anything amiss, I had a grand mal seizure in January 1998 at the age of 38. I had always eaten healthfully (and still do), exercised 3 to 4 times a week (and still do). It was shortly discovered that I had a brain tumor (oligodendro-astrocytoma or "mixed glioma"). The golf ball-sized tumor was removed from its right frontal location (a) later that month. I went home three days after the surgery in generally good condition! As the remaining cells were malignant, I took the chemotherapy drug Lomustine (CCNU) in March, but overdosed by taking two pills per day for six days instead of two pills the first day then getting a shot of a different drug on the seventh day. This was due to confusion with the instructions and by receiving too many pills (instead of receiving only two pills that was a customary practice, they gave me a bottle filled with twenty so I didn't think it unusual to take twelve pills during those six days).
In layman's terms, what happened next was that my white blood cells overreacted to the poison and in their zealousness to get rid of the chemo, 'ate' the myelin sheath (b) coating around my spinal cord at about my T-4 vertebrae (bottom of chest in front). (technical description*.) On May 2 I woke up paralyzed at that level. Sometimes my condition is referred to as Transverse or Diffuse Myelitis. The tumor led to seizures every couple of months through May 1999. Since then, I've had only four seizures. The doctors say my condition is permanent, but doctors can't know the future. I rehabilitated in two hospitals until my return home in October 1998.
(a) The tumor was in the area of my brain behind my forehead, which is correlated with executive functioning. The prefrontal cortex as it is known is responsible for our ability to inhibit inappropriate impulses. I often find myself doing or saying the wrong thing at the wrong time, most likely due to this injury.
(b)What is Myelin you ask?
It is the white matter coating our nerves, enabling them to conduct impulses between the brain and other parts of the body. It consists of a layer of proteins packed between two layers of lipids.
Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons which make up the nerve fibers. Each oligodendrocyte can myelinate several axons.
My paralysis began when the immune system attacked nerve fibers and myelin sheathing in the brain and spinal cord. The abnormal immune attack caused inflammation which destroyed nerve cell processes and myelin, and interrupted these electrical messages. Because the messages do not get through efficiently, both conscious and unconscious functions of the body are impacted.
(You wanted to know...)
These are events that have occurred due to my unique condition:
- I took a Neurological-Psychological evaluation in early 2000, which showed that my IQ has not changed and my long-term memory has not suffered. However, my short-term memory has been impaired and my personality has changed a little. I also lack many executive functions (such as ordering important items) because the tumor was in the part of the brain known to affect these areas.
- In April 1998 I had a seizure and dislocated my left shoulder that has led to ongoing challenges.
- I am taking many drugs throughout the day to offset one effect of the chemotherapy or another: one for pain (Neurontin), one to control spasms (Baclofen through a pump in my abdomen), and two to prevent further seizures (Tegretol and Keppra).
- I developed a decubitis wound (pressure sore) at UCLA in mid-1998 over my coccyx. When I came home in October 1998 it was a level 3+ (a large hole). The wound took another 10 months to heal to a level 1 (flat, new skin). It must still be treated with caution (e.g. I can't lie on my back when sleeping for extended periods, must sit on a special cushion, and do a pressure relief while sitting in my chair by pushing myself up every hour).
- In July 2000, I found out that some infected urine had backed up into my kidneys and their function had been impaired to about 60% efficiency. Related to the kidney problem, my red blood cell count became low and as a result I became anemic in August. In a one-month period, I had three blood transfusions. I took Epoetin injections weekly to augment my red blood cell production. After a month of taking the Epoetin, my red blood cell count stabilized and has remained normal. I've not had to take this medicine since.
- In November 2000, I developed shingles (herpes zoster) on my head and forehead extending down to my left eye. Shingles can be triggered by any number of things as an adult who had chicken pox as a child. In my case, an impaired immune system and a cold seem to be the best guesses as to the trigger. As a result of this disease, the vision in my left eye deteriorated rapidly due to corneal scarring, I had a corneal transplant in my left eye in July, 2007.
- At that same time I had a Baclofen pump installed in my abdomen. It is about the size of a hockey puck; it is most commonly used with Morphine. I had been taking Baclofen orally to relieve my leg spasms. The pump puts the drug directly into my spinal cord, which is where it is needed, at doses measured in micrograms vs. milligrams when taken orally (instead of 120 milligrams, I only need 2,000 micrograms). As I no longer ingest the Baclofen, I do not get as drowsy during the day and my organs are spared the trouble of processing the drug. In March 2007 and then again in August 2009 I had a new pump installed. When the pump was replaced, the rate of Baclofen was set too high and I ended up in the hospital for three days. They turned the rate down and I recovered.
- From the outset of the paralysis I had extreme skin sensitivity (allodynia) in my chest, sides and back (called Central Pain Syndrome as it relates to a spinal cord injury). It hurt so much on a daily basis that I had trouble wearing a shirt. I tried acupuncture for this pain and although I got some relief, it wasn't consistent enough to warrant continuing. In 2003 I tried lidocaine laden patches (Lidoderm) on my chest and sides. Even though I had to shave my chest weekly, for the first time in years, I was relatively (but not 100%) pain-free. I could wear a shirt! I gave up the patches on 1/1/06 and now enjoy a relatively pain-free day so far as it relates to wearing clothes. The sensitivity has completely subsided, but after sitting for several hours, I get a tingling sensation that is very painful..
- As I must use a wheelchair to get around, I don't get the intestinal benefit that walking produces (peristalsis), so I have a daily challenge with constipation. (I became more regular as I started walking with leg braces beginning October 2003.)
- I'm allergic to Dilantin and Cefapime, and have a strong negative reaction to sedatives. However, I've seen twice that when taking a new drug, sometimes the side effect of the drug is worse than the intended benefit, so I had to stop taking it. The two drugs were Topamax and Fentanyl.
- In December 2001 I developed hyponatremia (very low sodium) due to some medicine I was taking (DDAVP) to reduce night time urination. The hyponatremia caused me to have a seizure (first since May '99). I spent a week in the hospital while they figured out which drug caused this. At first, they only had me cut down on the DDAVP. This was not as effective as it should've been and in May 2002 I had another bout with hyponatremia. I've since completely eliminated the DDAVP. My sodium level is now consistently within normal range.
- In February 2006 I developed bronchitis and sinusitis at the same time. I also had to deal with a minor pressure sore on my spine due to a bad back brace.
- I continue to have bouts of insomnia where I'll get three or four hours of sleep and find it hard to make it up by napping or going to sleep early the next night.
- In August 2010 my Baclofen pump had to be moved higher up on my abdomen due to the curve of my back. (I started physical therapy to hopefully correct this.)
- October 2010 I fell out of my wheelchair and broke both legs: tibia and fibula on the left and tibia on the right.
- In January 2011 I had the ball head of the humeris in my left arm replaced with metal as the cartilage had been worn away and there was bone on bone rubbing to the point where the ball had nearly squared off making most movements painful. By the time the next six months rolls around, I'll be as good as new.
- In February 2011 I took another Neurological-Psychological evaluation and the only large change was that I'm a little slower than in 2000.
- In May 2011 I had eyelid surgery on my left eye to correct it from drooping, which affected my peripheral vision.
- In June 2011 I developed a very high temperature from a nasty UTI and ended up in the hospital for a few days.
- I had a supra-pubic catheter installed in 2013. This eliminated the need to catheterize myself every couple of hours.
- In October 2013 a pump study sent me to the hospital for three days, after having slept for two days.
- I developed significant hyper-lordosis (spine bending to the front) and scoliosis (spine bending to the left). You can see what my back looks like here. The only real treatment option is surgery, which I had done in October 2014. It was a spinal fusion locking my back from T9 to my pelvis.
- In January 2015, my pump stopped working, so it was replaced. This is the fourth pump I’ve had.
- My pain medicine doctor tried combining a new medicine, Prialt, with my baclofen to reduce the neuropathy in my chest and sides, but I ended up in the hospital for two days.
On the other hand:
- I was on the kids' grade school PTA board as newsletter editor for 3½ years.
- I volunteered in their classes.
- My general health is good; I rarely catch a cold. I'm even blessed with low blood pressure and a lean body.
- I started a website design business and joined the Castaic Chamber of Commerce.
- I started working out at the Center of Achievement for the Physically Disabled and working with a private trainer (Taylor Isaacs) at Gold's Gym. I've since transitioned to a regular gym and continue to workout 3 to 4 days each week. Now I go to C.O.R.E. in Northridge to see Taylor and to work out independently.
- I began walking with RGO leg braces and crutches almost every day. This has been a fantastic source of pain relief, cardiovascular exercise and strength building.
- I've participated in several 5k races walking the last 200 feet across the finish line. I did a CSUN event twice, for which I raised over $500 for the Center of Achievement for the Physically Disabled in 2005. I did the Long Beach Marathon and the Santa Clarita Marathon (twice).
- I received recognition from Congressman Buck McKeon for my efforts in the LA Marathon in 2005 as well as being written up 3 times in local newspapers and being interviewed by ABC in November 2005 (see video on media page).
- I spoke to several grade schools about my disability as part of More Like You, which shows kids that people with disabilities are just like them.
- I participated in a Diversity Day presentation at the local middle school.
- I designed this personal website to share my experiences and knowledge of disability with everyone.
- I walked across the finish line at the 2005, 2006, 2007, 2008 and 2009 LA Marathon coordinating the event as its team captain.
- I volunteered at the Henry Mayo Hospital for two years where I did part of my rehab back in 1998.
- I started a website design business called Spider Design.
- I became a Distinguished Toastmaster, participating in three Toastmasters Clubs.
- I wrote a book describing my experiences as a paraplegic in mid 2014.
In closing, paraplegia itself has a number of issues. Having to deal with the pain and the additional issues on a daily basis adds another level of complexity to my condition. I'm still me. My body is just challenging me every step of the way. I have a positive attitude and hope that against all odds, and what the doctors have told me, that my injury can be reversed. (I shocked my neurologist in January 1999 when I showed him that I can wiggle the big toe on my left foot! Unfortunately, there has been no other return of movement.)
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