“May I have your date of birth and is the member ID number on the back of your insurance card?”
I wanted to cry. My prescription was going to be filled and, soon, the world would stop spinning and I’d be able to close my eyes without feeling this feeling.
I read my birth date and member ID number to the young woman on the other end of the phone call.
“I’m sorry, could you repeat that?”
I begin again, using the tips that I had learned in ST: speak slowly, over enunciate, and focus on not running out of breath. It worked, of course. Sigh.
Calm down, I thought to myself. My speech gets worse when I’m excited. And I was getting my prescription refilled, so I was pretty excited.
She was eventually able to understand me enough to process my request. My prescription of Sertraline would be available for pickup as soon as I contacted the pharmacy.
Relief, elation, relief, elation.
That was maybe twenty minutes ago. It’s been around a week since I was last able to take my prescription. A combination of phone and memory difficulties had prevented me from obtaining my prescription for the past week. The vertigo has progressively worsened over the last week; I managed to glean a few hours of sleep last night, but it wasn’t enough. I sleep a solid 8 to 9 hours now that I’ve had a stroke. Pulling 3 to 4 hours just doesn’t cut it.
Why can’t I sleep? Imagine getting on a roller coaster and not getting off of it. Eat, sleep, walk, dress, bathe – do everything that you normally do while you’re on that roller coaster. But don’t fall off. That’s the level that the vertigo has reached.
For the first time in over a year, I pulled a cane out of the hall closet and relied on it to stabilize me. You know, it’s not a great feeling, taking a step backward. Even if it’s only for a few days that I need to use it, it’s a step backward. I know that it’s necessary, but it’s still a step backward.
It was interesting at first, the vertigo. I spent several hours each day for the first few days researching connections between vertigo and the lasting effects of the infarctions in my brain. But it’s not interesting anymore.
I do wonder if the Sertraline (generic form of Zoloft) has been treating depression in addition to vertigo. I mean, that the primary you use of Sertraline, but I wonder about that for me specifically. I was prescribed Sertraline for tremor and vertigo, but I’ve noticed a few things very symptomatic of depression since I’ve been off of it.
I’m thinking that if wean off of the Sertraline for a time, I would likely be on the severely depressed/suicidal side of things. To be fair, it’s a little difficult to really determine whether the depression is due to the current status of my vertigo, or due to an actual chemical imbalance in my brain resulting in depression, as a result of the stroke.
I’m a nerd, right? Who else would study their own symptoms of depression? A neuropsychologist or a neuroscientist. Which is what I’m studying. Go figure.
Anyway. Moving on!
Today was pretty interesting. I had PT and OT this morning, and my orthotist brought my AFO to my PT session. It fit and felt great. So why don’t I have it, you ask? Because I broke it. Seriously.
The tone and foot drop in my right leg and foot actually broke the AFO. Well, it broke the straps on the AFO. My foot was so determined to point downward that the strap that held the AFO to my foot and lower leg simply snapped. It is a rigid AFO, meant to strengthen and support my ankle and whatnot during stride dorsiflexion.
I was originally looking to get the Allard BlueROCKER that my coach, Steven, uses (the featured image of this post is of him on his trike and wearing his AFO), however the strength of my foot drop and tone overpowered it, and the strap holding it to my foot simply broke. So I’ll need a rigid AFO until I have enough strength to move to using something with a flexible ankle piece, like the BlueROCKER has.
So my orthotist took it with him so that he could replace the strap with a heavier one that will actually hold against my level of tone. It should be ready on Wednesday, so I’m excited. Take that, unexpected depression!
I’m strangely cheery given the chemical circumstances going on in my brain, aren’t I?
Okay, well, the room is spinning again. Still. Later.
*sorry (#sorrynotsorry) for the language.
Friend: Is [your sense of touch] even half of what you want?
Me: No. I’ve got a long way to go before I reach that point. I can’t train whenever I want, can’t drive, can’t cook, can’t write, I’m half blind, can’t feel touch, can’t speak like I used to, forget how to read, forget how to speak, randomly forget half my life, can’t always recognize people I’ve known for years, can’t ride my bike, can’t play music or make art and I freaking went to school for music and art, can’t go anywhere without telling someone where I’m going in case I forget where I am or what I was doing, can’t hold a job because I’d likely forget to go to work, etc.
Me: But I’m studying neuroanatomy anyway, practicing art and music, learning how to write, learning math and languages I’ve forgotten… It’s just going to take a while to be able to do those things again, but it’ll be so freaking worth it. Getting to learn how to do things that you used to love to do – not everyone gets to learn to do those things twice. So, we’re the lucky ones.
Friend: I’m not afraid of cars. I’m not going to sit still over a car. Isolation is my biggest fear
Me: I hate the isolation. I live in one of the biggest cities in the country but end up going for days, weeks without seeing a ‘friend’. Isolation fucking sucks ass. Sometimes I wish I’d get hit [by one of those cars] but then remember I’ve died before and it fucking sucked, so I stay alive for people like Adam and Andrea and Heather and Christy and John and Guy and you. It’s worth it.
Real friends – people are worth it. ‘People are precious, and sometimes we forget that. …they need friends, they need love. …love everybody, even the little and dumb and fat and ugly and weird, and, well, if we all lived like that, then maybe terrible things like we’ve just seen wouldn’t happen… and I guess that’s it.’
Well, I don’t know. I’ve been asked a few times since having DBS surgery and I don’t know is the simplest answer that I could come up with. I definitely hope that I’ll be where the gentleman in the below video is, but there’s no way for me or anyone else to predict that. The brain heals the way it heals, and no brain heals exactly like any other brain. Even if two brains have the exact same injury (not possible, by the way), they’ll heal differently.
My hopes are that I’ll be walking more normally – my truncal strength and stability, gait pattern, and affected leg strength – in a year; that I’ll be on my way to running; that my speech will be clearer; that my memory will have improved; my ataxic balance, coordination and speech will be more stable; my affected hand function will be more normalized; that my aphasia won’t irritate the crap out of me anymore, and I hope that I’ll be able to write my name without it taking upwards of two minutes.
Let me explain. I can do all of those things. I I can walk, run, talk, remember, balance, speak and understand what’s being spoken to me (for the most part), write… just not well, or at least, not as well or as easily as I would like. But there’s always room for improvement.
I hope that you, whoever you are, don’t take anything for granted, though I know that you do. It’s an inevitability; it’s likely that I’ll be taking my vision for granted again within a short amount of time.
Taking things for granted happens. It’s a part of being conscious. But that doesn’t remove any of the value of whatever it is being taken for granted.
Common normality is what the majority of people can do with relative ease – those things are what some of us regret having taken for granted. You don’t know that you took something for granted until you realize it’s gone. And, like my vision, I didn’t realize that I’d taken it for granted until I had an inkling of an understanding of what I no longer have.
But it’s perfectly okay to miss out on things. In fact, simply because an ability has been removed does not mean that the person it was removed from will miss it or wish that they could have that ability again. Humans are amazingly adaptable. We’re incredible.
I’m going to go look at more stuff now.
I can’t even begin to describe what this is like. Sure, I can describe what this looks like. But I can’t describe the feelings that go with it. This is freaking amazing. I haven’t seen so much at once in so long. It’s not perfect, but I can see. I can’t believe I’ve missed so much for almost three years and had no idea that there was an entire half of the world that I was missing out on. A video will come later. I’m busy looking at things.
…like pre and post-surgery stuff. Thanks for the reminder, Jeff!
Below is a quick video of me at my movement disorder specialist’s office before programming. Literally just before. I was actually there to get programmed and they took a video of a movement before programming me.
Next is a video of my walking 1 week post-surgery. It’s improved since then and will continue to improve the longer I keep the DBS device turned on.
I will be returning to therapy in a few weeks to resume OT and PT. I’ll try to be more frequent with progress videos.
Everything can only improve from here. The longer my DBS system is turned on, the better my results and the better I respond to the treatment.
Something to note is that since my movement is better and I’m more stable, I’m down almost 15 pounds since the surgery. Most of that is due to the surgery, what with recovery and everything. The rest is from a combination of being able to be active more easily and with a reduced frequency in episodes of fatigue. So that’s nice.
Okay, as usual I’m running late to get ready for it an appointment. I’m off to my neuro opthamologist to see about some prismed glasses, will update later.