If you would like to see a less personalized post on hemiparesis vs. hemiplegia, try this recent post.
I was at my son’s latest neurology appointment a few week or so ago, the one I posted recently. I’m not really sure why I didn’t mention this in that post, maybe because it was already so dang long! I do have a bad habit of rambling. Anyway; one of the things about being disabled, at least for me, is that I am constantly ‘researching’ things. I’ll look up one word and I’ll let it take me wherever it may take me. This simple-minded habit/hobby of sorts has led to some pretty interesting things. For instance, did you know there is a syndrome called Alice In Wonderland Syndrome (AIWS)? It’s actually really interesting. It’s basically a distortion of imagery that your mind creates from a lack in spatial awareness/sense. Your mind struggles to present to you a correctly proportionate image of what it is really seeing. It’s no secret Lewis Carroll suffered from migraines, it’s in a lot his biographies (if not all). But did he ever think that one of his biggest burdens in life would lead to one of the world’s top pieces of literary art that would create not only a cult following that would survive his life span by more than a century (and still going) but would also become the name of a syndrome that some of us like to refer to as:
What the fuck was that?
I have only had one major episode and some minor ones with AIWS so I’m fairly positive I don’t actually suffer from this syndrome. It’s a confusing and bewildering experience to say the least. Just like in the story Alice In Wonderland, things are a far cry from normal. People have big heads, rooms appear small , the furniture oversized and things like beds become long and wide, making you feel like you are shrinking. I had no idea this was an actual thing. I’m not a hypochondriac. I know when/where my symptoms end and where my imagination picks up the rest. So finding out about AIWS was shocking, yes, but did it mean I needed to rush to the doctor for a prescription? No. Would it have been nice to know that all of those little episodes meant something bigger and much more destructive than an active imagination was chilling in my brain? Yes, absolutely. How would anyone have known anyway? My big episode happened when I became ill as a kid. It was a fever that came out of nowhere in the middle of the night. I had a nightmare that I was in a hospital bed and people were screaming Happy New Year at me from all sides. Weird, right? I thought so too. My mom woke me up and I slept out in the living room for a day followed by lounging with this fever for about a week. I know now that most likely what happened was the fever might have triggered a seizure which triggered the episode and caused me to freak out every New Years celebration for the next few years like I was some weird prognosticator. Nothing ever happened on New Years…yet.
Aside from AIWS which is not only a symptom of temporal seizures/epilepsy and migraines but it is also a symptom of an AVM. Of course, when I found that out it was like:So this was the same type of way I found out that hemiparesis is not always simply hemiparesis. There is also hemiplegia. What’s the difference? That’s just the thing! I have no idea! Ok, I have a little bit of an idea. Let me ramble on:
When I first suffered my stroke, things were awful. I only felt pain; it was like having my left side wrapped up in high-grade sandpaper. It was brutal. I didn’t want to be touched and I had trouble finding my arm….A LOT. How do you lose a limb that is still attached to you? I have no idea but I managed to…often. When I was first asked to move parts on the left side of my body I was immediately diagnosed as hemiparetic. I couldn’t move anything. Hemi- means half, -paretic (or p-aresis) means of or pertaining to weakness. Okay, I get it, because within a couple of weeks I had learned to ‘walk’ again. So I could step, just not evenly. I could raise my arm after a couple more weeks. So I could move my arm but just my arm so yeah, ok, I get it: weakness. I am weak on the left side, not completely paralyzed. It makes sense. I just figured that these guys in whites coats knew what they were talking about even though I could not do anything more than slightly do this or that with the main joints of my left side (shoulder, elbow, hip and knee). I mean, I was the one with brain damage, what did I know, right?
Some time passes, I guess we could safely say a year and a half goes by. I joined my first support group and discovered that no one is familiar with the term hemiparesis. Why? Well, haha, because it appears to be that in the cases with one-sided weakness developed from a ruptured AVM, once the blood is reabsorbed into the brain, patients typically start to regain their affected sides. But not this girl, oh no. This girl decided to hang on to that ‘weakness.’ So I started to Google, and Google I did! I wanted to know why I was the only one. Why was I so left out. Well the answer is simple and obvious. I didn’t just have a bleed, things ruptured and were sprayed. It was not a gentle oozing but an all out spray of blood that caused great damage. I’m actually lucky that I survived with what little I have.
While on my search for knowledge I found this other term: hemiplegia. Hemi- meaning half, -plegia meaning paralyzed. What is this new term, I wonder while opening many new tabs to figure this out. No; I don’t think I have it. I have too much movement. I am not completely paralyzed on the left side. I am weak…severely weak. I go over this again and again, always trying to find a new definition that suits me best as I am not comfortable with the term hemiparesis in regards to my own diagnosis but don’t feel that I qualify for hemiplegia, either. Where do I belong?
I’ve discussed Boonshka recently. He has been Google diagnosed (by me, of course) with spastic diplegia cerebral palsy after I researched the diagnosis his neuro gave him which was PVL (periventricular leukomalacia). The reason my son even has a neuro is because he is weak on one side of the body. I am comfortable with the term hemiparesis when we discuss my son. It suits. He has full function it’s just not precise or well-coordinated. His fine motor skills are slightly lacking and certain muscles don’t exactly fire when they should while he walks…because his muscles are weak. So as I was discussing his hemiparesis with his doctor, I asked the obvious since I keep forgetting to ask my own neuro and other doctors.
How wide or long is the spectrum of hemiparesis because we have both been officially diagnosed as such yet he has so much more going on than I.
The neuro looked at me, looked at my balled up hand in my lap, asked about my foot and fingers and I told him bluntly, “No; there is nothing here” when talking about my hand. He easily replied that if he were my doctor he would not have said I am hemiparetic but hemiplegic. I have so many new questions for my new neuro (note to self: blog about second neuro quitting their practice because of ‘Obamacare’). I am more familiar with medical terminology now, especially when it comes to the types of disabilities my son and I face. My continued search brought me towards spastic hemiplegia. The thing is, -plegia means paralysis but if you dig deep, actually read articles and medical journals, not just the straight definition, you will discover that it doesn’t actually mean completely paralyzed. Every patient is very different from the last and the next. This means that no one diagnoses of syndromes and conditions could ever really define you (skip over the whole my disability doesn’t define me mantra thing). So these terms are actually quite broad. Many may wonder what difference does it make anyway? But for someone like me it means a world of difference. I have to know what is going on with me. Where on the chart of statistics do I fall? How do I treat myself when doctors are unable to treat or help me? I need this textbook definition of myself. It seems to bring me comfort somehow. This changes nothing for me except maybe a few things get rewritten on a chart here and there, maybe it will somehow affect my SDI but I doubt it will alter that too much.
I just wish doctors could all be on the same page. This is exactly why it is very important for us as patients to pay attention, take notes if need be. Bring a recorder or have someone accompany you on doctor visits so two sets of ears can hear what is being said and shared. And ask questions. Even if your doctor looks upset and impatient, ask those questions until you are satisfied you asked them all. And if this pisses off your doctor, get a new one because this one is clearly overwhelmed and has little time to spare for your concerns.