My Terrible, Horrible, No Good, Very Bad Day!

Editor’s Note: I wrote this post in September 2010, saved it in draft, and promptly forgot about it. So here it is —-

You may know that I’ve borrowed this title from a children’s story we loved to read to our kids “Alexander and the Terrible, Horrible, No Good, Very Bad Day!” Well, I had that kind of day a week ago on Wednesday. Maybe I should have seen it coming. I have a new symptom – ‘dropped head’ due to weak neck muscles, plus I’d been feeling dizzy lately.

It started well enough – breakfast and coffee with my wife Valerie before she left for work about 8 am. About 8:40, my friend Dede picked me up for Aquafit – my first such class in 10 weeks! (They limit summer classes, and we were away a lot as well.)  I had a horrible time in the water – I was fighting neck pain trying to keep my head up, and I could not keep my balance. I fell once, and quickly regained my footing and got my head above water. I spent a miserable 40 minutes and started to get out of the pool as the class moved to the deep end. When Kate (another good friend and Aquafit ‘chauffeur’) came over and asked if everything was OK, my emotions burst and the tears poured out. [Those readers with MSA or who are MSA caregivers know about wearing emotions 'on our sleeves.']

When I had returned home and was preparing my lunch, I got up to my clumsy tricks again. I wanted to work on a Sudoku puzzle in the morning paper. First of all, I dropped a pen on the floor.  No problem, I said to myself. I’ll use another pen and I’ll pick up the first one later with my ‘picker-upper’ (a gift from my friend Winkie), which unfolds into a three-foot device with a handle to squeeze that operates the tong-like claw to pick up things on the floor. Next, I drop the Sudoku newspaper on the floor. I didn’t need the pen, but I needed the newspaper. Why I didn’t go and get my picker-upper for both of these items I will never know.

Yes, you are right if you thought I fell stooping to retrieve the newspaper. I decided to try to get up myself rather than calling LifeLine to ask my concierge to come and help me get up. Instead, I managed to gently topple a kitchen bar stool that I then used to boost me up. It ‘only’ cost me 15-20 minutes(!) and a t-shirt I had to change since it was dripping of sweat.

Other than getting over the shock of falling, the rest of the day went OK – of course, I did next to nothing since I knew bad things often come in threes. And sure enough, after I had fallen asleep, I suddenly had a coughing fit and when I sat up in bed, I started coughing up lots of sticky ‘bile’ from my throat. This was a first such instance for me. My throat was very sore once I was finally done with the coughing. So the result was that I ‘slept’ in a chair that night and woke up with a very sore back.

So that was my terrible, horrible, no good, very bad day. I may have more of them, given the pain I’m now experiencing, so it became important to me to write about it.

Editor’s Notes:

  1. This  post was written about 16 months ago in September 2010. I have no idea why I didn’t publish it then.
  2. The Aquafit class described above was, sadly, my last class, due to my weakened neck muscles and drop-head symptom.
  3. The pain described in the closing sentence had ‘disappeared’ by year-end, and 2011 plus January 2012 represent 13 pain-free months!
About these ads

5 Comments

Filed under Exercise, Family, MSA, Socialize

5 responses to “My Terrible, Horrible, No Good, Very Bad Day!

  1. Stephen Devine

    Hi Paul,
    HAPPY BIRTHDAY!
    I hope you’re having an exciting and special day!
    I hope you received the e-mail I sent you in reply to your note back in the fall?
    If it’s at all possible, I’d be very happy to come by for a visit!
    Best Wishes,
    Steve

  2. connie lopez

    i wish i could write i have msa for 2 years dx

  3. Tony

    There is a drug which has radically improved my relatives msa, but its not available in the US/UK.(read this: http://www.shy-drager.org/ForumRetrieve.aspx?ForumID=2683&TopicID=10812)

  4. Sent from my iPhone

  5. Anonymous

    Dear Paul,
    thank you so much for sharing your story with me. My mother just passed away last month of MSA, and it is good for me to see that other people shaired some of her symptomes and struggles since MSA is such a rair thing We did not have the best idea what to expect with her over the last few years.