Thursday, 4 May 2017

My Arms Have Gone Away

I am struggling with a deep depression as I write this post today. My arms have been failing me for the last year, the last six months at an increasing pace, towards a tipping point where a great many things would become impossible for me. I seem to have passed that tipping point. Today, while getting dressed, I was unable to sit up solo. My HCA had to help me sit up straight. In addition, I was unable to maintain that position unless I held onto my M-rail, lest I tip and tumble backwards.

Yesterday, while trying to transfer from the bed to my wheelchair, I had some issues with the guard rail on my chair snagging the back of my jeans. No problem, just a slight forward lean, the thing I have done hundreds of times before. Only this time, I kept on going, right down to my bedroom floor. It wasn't a long drop; I was relatively unhurt. It just hurt my pride, or rather confirmed in my spirit what I already know is going on.

There are so many small things I can no longer do. I can't pick up a full laundry hamper from the floor. That's why I keep one atop the taller hamper in my bedroom, so I can just slide it into my lap. If there is one on the floor, and there usually is one on the floor, I must first empty about half of the laundry from the basket, lift it, then pick up the laundry and return it to the basket. I couldn't lift my bag of groceries the other day; I had to half empty it from the back of my power wheelchair, then untwist it and lift it onto the counter.

Transfers in general are impossible without assistance these days. Yesterday's episode with the transfer board and the subsequent fall demonstrate the risk and danger. I'm now using my sling to both get into bed and to get out of bed, unless I have someone helping me who is aware of what might happen. Even Micheal, my HCA, has trouble with the transfer process these days, although Kathy, my other HCA, seems to do it just fine. But doing it solo is now fraught with difficulty and danger.

There are so many things; doing wine, roasting a turkey or even a lamb of leg, wheeling over the carpet in the spare room, moving my table and chairs, picking up stuff from the floor, arranging groceries in the pantry or freezer. It's all becoming too much, well past the abilities in my now totally weakened arms.

The next marker point for this process is when it becomes too difficult to life a cup of coffee or a glass of wine. I hope that's a while off yet. That will be the worst tipping point of all.


  1. I am so sorry, Richard. I am getting a little taste of what is to come in a rented condo on the Maine coast. I wasn't able to lift myself off the toilet and had to crawl to a low couch and climb up on it. And of course, getting off the couch is a challenge too--I have to grab a throw pillow to to sit on for some height. My friends aren't here yet, so I am trying to figure things out before they arrive. Maybe a transfer to and from the wheelchair will be the ticket.

    1. I have learned to trust and depend on my friends. Let them help you. Also, get yourself a transfer board. They cost about $75 and are at almost any medical supply store.

  2. Hi Richard...I am sorry that you are struggling with depression. My father was diagnosed with ALS in August 2016. He only focuses on what he can't do anymore and can't seem to find any positives to his life. He has tried a couple of antidepressants, but can't get over the hump of the side effects in the first couple of weeks.
    Are you on or have you been on antidepressants since your diagnosis? If so, have you found a particular brand that hasn't had horrible side effects.

    I really love the honesty of your blog. It gives me a little insight to what my dad deals with everyday.

    1. I have had to deal with mild to clinical depression for most of my adult life, so I know a lot about antidepressants. The feelings your Father has are quite normal for someone so recently diagnosed. I was like that for most of the first year post-diagnosis. The doctors have me on something called Venlafaxine (aka Efexor). We've had to increase my dosage a couple of times to keep up with the FTD I have. It works, though, and that's what counts.

      The other thing to remember is that your Father is not just dealing with the disease. He is going through a continual process of grieving, a process that leaves him emotionally exhausted. It looks a lot like depression, but it is more sadness and sorrow than anything.