Thursday, 13 July 2017

Post Clinic Depression

It's official. I am living with a nasty, ugly, debilitating, destructive, cruel illness. I have ALS. That was confirmed, once again, yesterday at the ALS Clinic down in the South Health Campus here in Calgary. I'm not really sure why I go to the clinic anymore. Pretty much everything they tell me is something I already know. The only real outcome is adjustments to medications, something which could just as easily happen in the office of any family doctor.

There was a medication adjustment yesterday. I take something called Efexor, also known as Venlafaxine. This drug is actually an anti-depressant, however it is also very effective in handling some of the more visible symptoms of Frontal Temporal Dysfunction. This is the part of the disease which leads to uncontrolled emotional outbursts; for me that was uncontrollable crying. It also helps with impulse control, not normally a good area for me regardless.

The increase this time had nothing to do with FTD. These days I am struggling with good old fashioned depression, situational though it may be. So for the first time we have increased my dosage of Efexor to a level suitable for treating depression. Prior to now I was on what might typically be considered somewhat below a half dosage. The typical dosage for this anti-depressant is between 250 and 300 mg per day. My dosage is 112.5 mg per day, and that's after increasing it due to a behavioural incident last year. We are moving it to 150 mg for a couple of weeks to get me used to the increase, and then to 187.5 mg after that. This is still a fairly modest dosage. I hope it will help with the worst of the depression, however not living with ALS would be better.

My weight was another focus in the clinic yesterday. After my complaints about diminishing arm and leg muscle mass, the folks at the clinic wanted to ensure I was eating well and maintaining my weight. I am, and I am. My weight has been constant for a couple of years now, other than a scare last January were I was down a bunch. I have it back now. Unfortunately the weight I have is all round my belly, not in my arms and legs. My appendages continue to shrink; my belly continues to grow. My weight remains constant, or at least nearly so.

Yet another focus was my respiration and lung volume capacity. As it has over time, my lung volume continues to diminish very slowly. When diagnosed, I had 85% of normal lung capacity. This is now down to 79%, not much of a decline after the initial slide. The more significant issue is increasing weakness in my diaphragm and general respiratory system. I run out of breath more easily these days.

In discussion with the respirologist, I suggested that after I lose my arms, I might succumb to Bulbar ALS. She said she didn't think so. I asked what it might be that would finish me off, if not that. She said I was more likely to die from respiratory failure. She didn't express a timeline, but I am failing in that regard so it will come eventually. I am not sure I want to wait it out. We'll have to see how it looks when I get there.

The final conversation of the day revolved around my truck. I was telling the neurologist how I was thinking about selling my truck, since I cannot get into it, and buying a van that I could get into. He suggested that the logistics of selling the truck to buy a van might be a lot of work from which I wouldn't get a lot of benefit. His intimation was that I would not be driving for as long as I thought. I'm not surprised. My shoulders and upper arms are just about done. My fingers and lower arms will stay with me for a while, but I need upper body strength to drive that truck.

The conclusion on the truck was that I not sell it, that I keep it and ask friends to help me get in and out. When I am completely unable to drive, then I should simply sell it and accept that new reality. Either that or make my last drive through the Rockies and miss a turn along the way.

There is nothing in all of this that I did not know. There are no surprises here. As my neurologist said to me a couple of years back, "If you think it is happening to you, it probably is."


  1. :( ....yes, similar here but I seem to lose both upper arm and hand strength all at the same time. Very interesting about the respiratory probably going before bulbar.... I get very short of breath talking, of all things, more than any other activity..

  2. Me too, the short of breath while talking thing.