Wednesday, March 30, 2011

through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.
Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 


  1. Bless you for finding good times, and humor, with this frustrating disease. All the best to you and Patti.


  2. What a contribution you make, not just to Patti's life, but to all who read you who can understand better through you what it is like to live with this illness. Thank you for not letting Patti, and by extension others in her condition, become voiceless.


  3. Patrick, what a great husband you are. You see beyond all the negatives of this lousy disease, and you allow yourself just to enjoy being with Patti. Yours is such a true love story -- thanks for sharing it with us.

  4. I love what Muffie said and I echo her comment. Of course I'm here laughing at Patti's last comment, but regardless, it was a fun time for her and that is what mattered because you made it fun. Thing is I know you balance many acts when you guys go out, keeping track of Patti, holding popcorn, watching out for dysphagia, being prepared for "outbursts" and trying to keep track of the plot too to potentially talk with her about it afterwards. And you make it all work time after time after time. Amazing!!!


  5. You describe all the ugly symptoms of MS very well. It is tough to live with your body acting like this and tough for you to watch it. Thanks for caring!

  6. You describe everything so clearly it really paints a picture of what MS does to someone's body. The fact that you still appreciate everything that makes Patti who she is (even the MS dimension to her movie going experience)is great!

  7. Thank you all for the kind comments and encouragement, after all 'silence' may be the most dangerous MS symptom of all.

    Caregivingly Yours, Patrick


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