Saturday, 30 April 2016

This Is A Really Weird Disease

I'm feeling good today. Perhaps it's because I am having a wine bottling party which will produce more than 100 bottles of wine for my cellar. Perhaps it's because a host of my friends will be coming to help me with the bottling effort. Perhaps it is because Katherine is here, helping me along the way. In fact, Katherine is the most likely reason. She has been away, sick, for the last week, unable to visit because of the flu. Now that she is able to be with me again, I am once more feeling very contented.

Feeling good is important, but it is not to be confused with feeling physically good. This feeling I have today is clearly emotional. In fact, from a physical perspective, I am feeling much worse. The decline in the upper portions of my left arm is marked and noticeable. I am now having trouble picking up things like my transfer board, and I am even noticing the heft of a mug of water.

The funny thing is that my lower arm and left hand, while weakening, remain relatively strong, at least when compared to my upper arm. It is the oddity of ALS that I can pick out individual muscle failures, and some muscles live on long after all the surrounding muscles have died. I can still wiggle my toes, but I haven't been able to move my legs for a couple of years now. I still have the tiniest bit of flex in one of the muscles in the rear of my upper legs, even though I haven't been able to move the other muscles since before my diagnosis.

I asked the ALS clinic manager recently about how this could happen, how my left arm could be getting weaker but I could still drive. She pointed out that the muscles I use for major lifting are an entirely different group of muscles than those I use for driving. Once again, welcome to the weirdness of this disease. So my upper arm can hurt while my lower arm feels fine, and my right arm remains strong while my left arm weakens.

All of this, and yet I am still feeling very contented today, very happy. I have Katherine with me, friends coming over, wine to bottle. I have food in my fridge and freezer, gas in my truck, and a cupboard filled with canned goods. I am not starving, although I am certainly not rich. I guess I am feeling good because of all that I have, even though I have lost a lot. Emotionally, one part of me remains strong while the other part weakens, just like my body and ALS. Weirdness at its finest.


  1. What does homemade wine taste like? I'm guessing you can drink it right away? Is it comparable to a particular wine, or most similar to? 100 bottles could be a bottle a day.

    1. The homemade wine I make is from good quality wine kits at the local vintner store. It taste like any other wine you might buy at your local store, only a lot better in many cases. I make a variety of wines. This time we did some Barolo, some Cabernet Sauvignon, some Malbec and some Amarone.

      Typically my average consumption is a bottle a day, but that is not just for me. That includes Katherine's consumption and parties. Last night we went through a half a dozen bottles of wine.

  2. Glad you are happy with your wine collection my dearest. Your cellar is full and so is your life. Thanks to all your friends and to Katherine for making your day. Love you Honey. Mom

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