Saturday, 17 May 2014

Milk In My Coffee

It's difficult for most people to see the weakness in my arms; I can still wheel my wheelchair and can still pick things up that most people would find challenging to lift. I have, through my life, been blessed with a strong body, a body able to do whatever I asked of it. That has changed with ALS and even though it might not look like it, my arms are definitely weaker than they were six months ago.

The thing is, this increasing weakness in my arms has not made a difference in my FRS so far. That's because the FRS that most of us use is fairly "coarse grained". The limited number of data points lack the ability to show smaller, less obvious changes. So it looks like my FRS has not changed in some time even though my arms are getting persistently weaker. What will happen is one day I will reach a threshold, a place where one or more of the data points gets triggered and there will appear to be a sudden change. The change is not sudden, the tools just don't measure the slow slide.

Of course the FRS is a "Functional Rating Scale", rating the ability of my body to function. Given the solid pre-existing strength in my arms and the comparison with a general population on which the scale is based, I started with a pretty big "Functional" reserve. I was really strong, so this new normal for me is probably not all that much different than normal for a lot of people. It's just a new normal for me; I still function quite well in my arms in comparison with the general population.

The best way to show the slow loss of strength in my arms is through a couple of recent incidents, things that have been happening lately that make the loss clear and visible. First there is my ability to wheel my wheelchair up slopes and slants. I am simply not able to quickly make some of the slopes I used to do easily. Now it takes longer, making me work harder. Now I am grateful for help with even the easy slopes, the slopes that seem "invisible", like the cant on sidewalk or the grade of a parking lot.

Then there is the soap dispenser on the dishwasher. The other day I was telling one of the new home care workers that the lid on the soap dispenser was difficult to close. She put a soap packet in the dispenser and with apparent ease closed the lid, something that took a bit more effort for me. I am still functional; it's just not as easy as it once was to close the soap dispenser lid.

Finally there is the milk jug test. It used to be easy for me to lift a 4 litre milk jug. Now it is difficult. These days I find the difficulty in lifting the 2 litre jug of milk about the same as it used to be for me to lift a 4 litre jug. I am losing arm strength but it's not all bad news. I am still highly functional; I can still put milk in my coffee.


  1. Can you cut the soap in half before you put it in the dishwasher. It may make things easier and we use too much soap anyway. that is what Ray does.
    love you

  2. Ah…. To lose strength and the ability to do what was once mundane, and not worthy of notice. To lift a carton of milk. To attend a social gathering and be cheerful and energetic the whole time. To remember where the car keys are. To wake up and be ready for another day. Richard there so many kinds of weaknesses and vulnerabilities. I read about yours with compassion and admiration. I appreciate your candor. It helps me soldier on.