Saturday, 6 February 2016

It's Time To Change My Meds

I've been crying a lot for the last few days. And when I am not crying, there are tears just below the surface. I'm sad, terribly sad. Even if you can't see it, it's there. I'm struggling with my behaviour, with impulse control, although I hide it well most of the time, sometimes it shows up in the most embarrassing of moments and ways. And I am forgetting things; for the last few days I've wanted to log into my laptop with my password from two years ago. I have to stop and think to remember my current password.

All of this is almost certainly a result of FrontoTemporal Dysfunction. I've written about it before, but it rears its ugly head once again. Studies show that up to 20% of ALS patients demonstrate dementia, roughly 30% of ALS patients develop impairment without dementia, and up to half of ALS patients are cognitively normal. I am clearly not normal; I wasn't normal before ALS so I certainly can't expect to be normal these days. Nor do I have demetia, That leaves me in the 30% who develop cognitive impairment without dementia. So I look and seem like I always am, yet I get to be even sicker than if I had just plain old, everyday ALS.

I have the most common expression of FTD, that of loss of executive function. This loss shows up as difficulties in judgment, regulating my emotions, a slow down in my memory recall, and a loss of my already weak ability to be self-aware. For me, you can see it in my increased anxiety, in how easily and how much I cry, in my tendency to engage in socially inappropriate touching, in my inability to recall something I am sure I know, and in my general depression level.

Fortunately, there is medication for this. Fortunately I can mostly live a life without constant embarrassment, without living on the edge of tears, without forgetting things all the time. Unfortunately that medication loses its effectiveness over time, or rather my body builds up an immunity to the drug. That means I can slowly slip back into this madness without even knowing it, all the while thinking I am medicating against it.

The slow slip into the grip of FTD is like the slow slip towards death from ALS. It happens so slightly, so minutely, that you don't even see it. Forgetful? Everyone is forgetful at my age. Depressed? Of course I am depressed. I have ALS. I'm dying slowly, cruelly. Inappropriate words or actions? That should be my middle name. Anxiety? Well, that one at least is a new one for me.

It's easy to see how I could get to what is essentially an un-medicated state without even know it. It's scary, it's frightening. Especially the suicidal part. Suicidal thoughts are a part of living with ALS. What you don't see is the increase in them. These days even the smallest distress makes me think of killing myself. Say something rude? I want to kill myself. Do something stupid? I want to kill myself. It's all about over-exaggeration of feelings and responses.

Of course I am headed back to see the doctor. It's time to change my medications, time to get this monster back into its cage. In the meantime, I have apologies to make. I'll probably stay at home for a while. Clearly I am not safe outside without supervision. I am once again a child.


  1. wow , exactly how I am feeling get out of my head!

    1. Are you taking anything for it? I take Efexor, but it looks like I need to up my dosage again.

  2. May sound extreme, but I wouldn't take anything. Except, particularly for restless legs, Tramadol 50 or 100 mg, as they say it makes everything seem okay. Maybe it is a reaction to getting back home and to routine and not traveling and having more time to yourself especially I think as Katherine may be going back to work?