August 14, 2013
So ... When I last left this story of an Angeleno trying to fight the system and get my driver's license reinstated or at the very least have my DMV hearing to examine the issues in my case, I was moderately hopeful and pretty stubborn. Today, as the middle of August 2013 approaches, I know I've lost some of my spunk and a lot of pep in my step. Fighting the system wears you out. Or at least it does me.
I first started with my HIV specialist, Dr. Moe, who had a great idea in referring me to a clinical driving assessment program offered through the occupational health program at Cedars Sinai Medical Center. I had to pay out of pocket for the assessment because no insurance companies or Medicare covers such an assessment. Minibattle #1, they win -- but as I succumbed to the testing and the fee, my aunt and uncle donated the funds and my appointment was set. In actuality, I was pumped to have my assessment. Surely I thought, when the nurse on the phone explained they would be simulating areas that pertain to safe driving such as reaction time, ability to see, process, dexterity, physical movement, all items that are necessary for safe driving, I can do this! At the end of the exam, they would give me an on the spot answer to take back to my doctor that said one of a few choices like: no areas of concern found; or she needs a behind the wheels assessment; or she needs remedial training, reevaluate in 6 months; or she is not a candidate for independent driving. I was VERY optimistic because I felt confident that all of those things as they related to driving I could pass. There would not be a vehicle the nurse said but something would be simulated using a computer. Easy peasy ... BOY was I wrong!!!!!!
The tests given to me I would describe more as neuropsych testing. They were difficult, tedious and in my mind had nothing to do with driving. There was one simulated test with me behind the wheel accelerating and braking. The rest were pen and paper tests or computer tests, all like I had inpatient at the hospital or in my formal neurological testing for cognitive delays back in 2005. Needless to say the tester found vision-perception difficulties, attention difficulty with divided attention and processing speed difficulty. She explained that all the research showed that delays or difficulties in those areas correlated to a high crash experience or ratio so with one quick decision, she found me unsafe to drive at this time and recommended a behind the wheels assessment with remedial training to determine further driving safety. I was devastated.
Being the fighter that I am however, I took a deep breath and dove right into figuring out the piece on the behind the wheels assessment. In order to get that piece done I needed a special drivers permit. In order to get the permit -- AHHHHH -- you guessed it if you are following along closely ... I needed the medical form filled out by my doctors saying I was safe to drive!!! SIGH ... I'm sure that people in my neighborhood could hear me banging my head against the wall and wondered what was so wrong in that tiny little house down the block!!!
Once again, I begged my doctors for help. My psychiatrist whom I've grown very fond of just couldn't override the rest of the team. My HIV specialist explained she could lose her license if she signed off and then something happened to me or God forbid someone else while I was behind the wheel. My neurologist presented a similar story. However the neurologist did offer a new plan: get the following things done and let's see where you are and what diagnostic info we get back and maybe I will be able to fill out that medical form to let you get the special driver's permit so you can get the behind the wheels assessment and remedial training. Her wish list included an MRI, a lumbar puncture (spinal tap) and a compete battery of neuro-psychological testing. Phew!! I was off and running to get my tests complete!!
MRI -- I nearly panicked and gave myself a heart attack. This was my second one and it was no easier than the first. They really should find a way to make those things more patient friendly. They are a monstrosity truly! Happiness though ... my MRI was normal. White matter changes seem to have disappeared. Good news for me. Battle #2 -- I win!
Lumbar Puncture -- Done in my HIV doctor's office -- not particularly pleasant but I survived. I pictured myself in some type of jungle warfare, with access to a hospital limited and all medical care done in tents and on the field. I knew I was in great hands but to keep my anxiety under control it helps to visualize a scenario where I knew that the minimalist surroundings were normal and applicable to my care. They were doing the test to see if HIV could be measured in my spinal fluid as well as identifying some other specific proteins. Happiness is ... my Spinal Tap was normal ... apparently my CSF is looking really good! Battle #3 -- I win!!
Now I am on top of the world, I just know that I am going to get my medical evaluation to get my special permit, behind the wheels testing and ultimately signed off to drive. I just feel that once the doctors finish all my testing I will be able to go into my hearing calm and collected and that the judge in my case will see that I am fit to drive and that with some minimal restrictions the DMV can lift my suspension confidently.
Last to get scheduled was my neuropsych testing. There were several glitches along the way in getting this battery of tests scheduled. Unfortunately for me that meant I had to wait nearly five months to get the testing done. A lot can happen in five months. I had a major psychiatric turn of events in those five months where I got into a crisis. It took my psychiatrist, my husband and I that entire time to get on top of it and get my anti-depression and anti-anxiety medication straightened out. Both drugs ended up being titrated up to double their original dosing. As I write this I am now completely stable and so thankful to my doctor for listening to me and helping me through my very rough patch without a psych hospitalization.
My neuropsych testing was finally scheduled right toward the end of that psych crisis where I thought I was good but in hindsight I probably was still a little bit in crisis and we hadn't yet found the exact combination of drugs and drug dosages to help me. I think now looking back that maybe I should have rescheduled the testing but I didn't because I wanted to get it over with because I had waited so long for it to be done. Anyway, the testing revealed many deficits in my cognitive abilities. They found some that have stayed the same since 2005 and 2012 (dates of my last testing), a lot that have gotten worse and a few that have actually improved.
They also found some deficits in the frontal temporal lobes that are not consistent with HIV dementia and are more related to a genetic or developmental dementia and primarily manifest through behavior changes and impulse control. Those were the psychiatric crisis issues I was having at the time which are now stable on my medication so I can't really believe them as applicable now. The only way to diagnose between dementias apparently is to diagnose by exclusion. They excluded any dementias caused by mood disorders and to delineate between frontal temporal dementia and HIV dementia 100 percent they would need to at this stage of my treatment do a PET scan. No one is confident that my worker's compensation that pays for all my treatment would cover a PET scan since I have had two MRIs in one year. So most likely in diagnosing by exclusion and using my treatment history, history of cognitive deficits, neurological findings upon exam and diagnosis of AIDS, the frontal temporal lobe dementia will be excluded in its entirety. Anyway ... the testing did show the following areas of significant dysfunction: nonverbal intellect, simple/divide attention, information processing speed, visual-spatial construction/organization, learning and memory, grip strength and upper extremity motor speed, aspects of executive function and neuropsychiatric changes. If we look at what these areas really mean in layman terms it's the inability to do complex vs simple tasks, the inability to learn new skills or immediately process new information, the inability to visually understand an object's spatial placement or usage, anything as simple as changing batteries or as big as parking a car, the inability to safely and confidently process information and make decisions that involve planning and judgment and higher level thought processing, the weakness in upper body strength and speed which can affect several different areas of activities of daily living and then the psychiatric changes which for me happen to be mixed episodes of mania and depression. All of these areas my husband and I could relate to as they impact my life on a daily basis across many different spectrums and aspects of daily living.
Areas relatively or entirely intact were: Verbal intellect, language, sustained concentration and executive functions (verbal). These areas are important to me to remember because, like the testing indicated with my verbal strengths, I am able day to day to basically pass by. I have learned to compensate for my weaknesses and have my crutches built into my lifestyle -- although many of them are not healthy crutches; and I do need to start reshaping our life to accommodate the more acceptable ones and opening our lives up to accept the care that is being offered so that a piece or two of my life may indeed become a bit easier. I would say that my writing has not been affected either. It appears to be an extension of my verbal ability for it is through my writing that my voice is heard.
The final diagnosis after all the results were tabulated and all scores were considered and both doctors were involved on the testing team, is DEMENTIA DISORDER. There was no formal recommendation for or against driving so I asked the doctors very calmly what their thoughts were on that matter. The primary psychologist said they didn't need to make a recommendation because the diagnosis spoke for itself. Dementia equals no driving.
Right at that moment I could literally feel the blood drain from my face and the wind get knocked out of me as the tears started to roll down my face. This dementia diagnosis was ruining my life. I had fought so hard for the last year to set it straight and move beyond it. I had all these little battles. I had looked on the positive side. For the most part I had been a decent patient and I had worked with my doctors even when we didn't see eye to eye.
I am the Case Manager of my own care. I have been that case manager for the past 20 years and now as I try to take a reprieve in that I am grateful for the support of the team at APLA; but, this last battle, though, was mine to win, and with those words I realized in that moment I had lost not only the battle -- I had lost the war. There was no turning back. I truly was out of options.
It hasn't been long since we got my testing results. I haven't even seen my HIV specialist or my neurologist yet. There is nothing they can do. I understand their hands are tied. I have however processed this in my mind and with my family. The bottom line for me is that I have already for the past 6 months been in a grieving pattern for the loss of my independence and my license. I am already in the final stage of acceptance.
I have two teenagers with permits who are learning to drive. They have claimed my red Hyundai as their car. I won't drive with either of them for two reasons: 1. I legally can't as the licensed adult unless they have another licensed adult over the age of 25 in the vehicle; 2. It gives me a panic attack if we even go 0.5 of a mile. I am just not ready!! But I will be someday I promise! I've heard this has nothing to do with my disease process; it's a parent thing!
My dad asked me the other day,"If they gave you your license back do you think you could drive?" I answered him, "You know what Dad, I'm not even sure anymore. They have me so crazed and nervous about the issue I don't even know if I could trust myself. I don't even know if I could do it."
Always Daddy's little girl ... He said " Aw -- that's just the anxiety talking you'd be perfectly fine!" If only the DMV could see it that way and maybe lower the hoops a bit; maybe I'd get a chance to find out. Right now I promise to be a great passenger on Access Para-transit and the Metro-bus when needed and I will pray that my two teens do get their licenses in a reasonable amount of time so that I will one day enjoy being chauffeured around by my children.
Until next time,
Read Lynda's blog, Get Outta My Head, You Crazy Virus!.