THE ODDS (Debbie Does ALS)


The day after

 Well, except for an unexpected-change-induced shriek-fest, last night was a quiet night. The Klonopin allowed me to weather  another meltdown  with rather a detached air.

After a very restful night's sleep, I woke up to several inches of snow covering my car and all the roads.  Prudence dictated that I stay home so I bundled myself down to my serenity room where I had a good day, did much work without distraction, congratulating myself the whole time that I had made the right choice.

Time for a progress report.

In recent days -- okay, weeks -- it has become more difficult to get out of bed. I can still do it but it requires much more exertion. I sleep on the left side of the bed which allows me to lower my legs over the side and then hoist myself up on my left elbow. The leg lowering action is still very doable; the hoisting part is what is causing the problem. I fear it will not be long before I require assistance in this regard. Very disheartening.

I don't know if I mentioned that I am no longer able to use the hooks to put on my socks or shoes. I discovered this quite by accident on a day when the weather actually permitted me to go  outdoors. I don't know whether it is fortunate or not that I have not been out for several weeks. I suppose it is fortunate for the poor souls who are now forced to perform this function for me.

I've become very clumsy when trying to hold a brush so I have abandoned that tool altogether. My mother  always told me I was lucky to have curls and, though I question whether it is luck, it is what it is and I must make the best of it.  Just as with my clothes, I must accept that my limitations require acceptance of a new look -- a Louise look, if you will -- since I can't do anything about it.

Breathlessness while talking has become more noticeable. It is the rare conversation where I don't find I have to stop and sort of gasp in order to continue. I am very curious what my April FVC  reading will be.

Laughing (and occasionally, crying) and yawning are on the upswing. This past weekend while Becky and I were shopping I found myself laughing so hard that I bent over and could hardly breathe. Poor Becky! I just thought about Uncle Albert from Mary Poppins, and old Mr. Dawes (the chairman of the bank where Mr. Banks worked) and how their laughter caused them to float. In Mr. Dawes' case, it was also how he met his end -- not a bad way to go.  But I digress.

It is time, too, to purchase some grab bars. Just as getting out of bed has become more problematic, so, too, is getting up from certain seats -- particularly those made of porcelain. No TMI, just adding it to this list.


I have added something to my bucket list: I think it would be very, very cool to float around in a weightlessness chamber. I think there might be a facility nearby Washington and I'm going to explore the possibility. If any of my dear readers (all six of you, by my count) have any insight into  how I might make my scheme a reality, please do tell.

I promise I will not become Mr. Dawes.

No comments:

Twitter Updates

    follow me on Twitter