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Losing My Driver's License: The Battle Continues

August 14, 2013

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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,

Lynda

Read Lynda's blog, Get Outta My Head, You Crazy Virus!.

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