My psychologist was visibly distressed at my physical condition yesterday. He had not seen the cane yet. Amy sat in the hour long session for the first time, as my memory has been incredibly unreliable for weeks. But I definitely remember she was there!
My seizures are considerably worse this week. What used to be convulsions are now actual seizures and they prescribed yet another Rx yesterday for these. My whole body stiffens like a board so much that my head shoots back with my face toward the ceiling and my eyes slam shut for a second or two. I told the doctor that I am not comfortable driving like that. He agreed that would be a good idea.
It's been almost a month since I have been able to drive. I had no idea the frustration and sense of powerlessness that I would experience by losing that one freedom. At least I have three different visitors scheduled to come by the house today, which is both awesome and scary. How can I be so simultaneously lucky and unlucky?
After talking to me for the full hour, the psychologist assured me that I am taking this new development surprisingly well. Really? I'm not so sure about that. I am a decent actor and have been successfully portraying someone who is not dysfunctional or terrified for quite some time now.
I told him that this trial might so far be my worst, but it is not my first. Amy said she has watched me battle so many impossible obstacles for twenty years, that she has only assumed for the last six weeks that this will be just one more test that I overcome.
Two hours later, I had a follow up phone call with one of the leading tremor specialists for Kaiser Neurology in the Portland area. He prescribed yet another Rx for the seizures. I said I know he will not commit to a diagnosis until more tests are run and time has passed. But I said we were going crazy, waiting for some answers. I asked if he could at least indicate what by now he thinks it may or may not be.
He said they are overwhelmed with patients and thus playing triage, but he will see me again in person August 19th for another visual examination and can make that sooner, if my condition worsens. He also has me trying a new Rx for my seizures and another final increase on the Parkinson's meds for my tremors. He said I am definitely too young for Lewy Body Dementia. He said it is probably not MS or ALS based on the tests so far. He said the brain MRI did not show atrophy, but this ataxia still could be residual damage to the brain from years of severe alcohol abuse. Or it could in fact be Parkinsons, even though that usually presents less rapidly. They are still somewhat understandably dragging their heels on a diagnosis, but that is still one of the most indicated options at this point. I finished by agreeing to email him my father's years of medical records, with page after page of identical symptoms that started six years ago with dad.
One of their biggest concerns with my condition is how rapidly it onset, as mine progressed extremely fast. I slowly shuffled into his office two weeks ago, but without a cane. Now, a cane is barely enough to keep me from falling each day. If it worsens just marginally or even stays the same, eventually I will fall. I have so many close calls every day, even leaning deep into the cane.
The neurologist finally said last night that this could be another nerve disease entirely. He said it will require further tests, like super fun spinal taps. (He didn't really call them that.) They're going to continue to run some tests and try this new Rx for the increasing seizures for now, but it may be a few more weeks before we hear anything more.
Things not worsening for two whole weeks would be an improvement.
Amy is driving to California tonight with Brittany for her uncle Ivan's funeral. Ivan was a great guy and will be missed. Amy and Brittany will be gone for four days and she said it is time to determine if I am a big boy and can take care of myself. I have not told her that I am pretty sure I will fall over and take out some important furniture, then try to hide it from her later. (I hope she does not read this!)
Obviously, I am a big boy and take care of myself just fine. To prove that, I have invited about one hundred people to visit until my bride and firstborn return next Monday. And we have a guest room!
Regardless of what this is that I am dealing with, I still hope and plan to get better. Of course, my health problems getting better has literally never happened in twenty years beyond a cold, but I will positive the hell out this. You watch!
My dad also started to lose his ability to walk just six years ago, but he also suffered dementia almost immediately. There are a number of differences with me that could indicate this is not the same problem, but temporary.
I still enjoy time with loved ones, fully aware of who is here or on the phone.
I have had persistent memory loss, but only short term.
I can still think.
I can feel.
I can type.