A friend, Tammy Schuman, who blogs from the perspective of living with Spinocerebellar Ataxia (SCA), graciously allowed me to reblog her post. With Ataxia, a person may have problems with coordination because parts of the nervous system that control movement and balance are affected.
Through her blog, Tammy shares her experiences and observations about her condition. What I like about this post is Tammy’s description of the day-to-day challenges of managing simple bodily functions with Ataxia. During the most painful and uncomfortable days of my cancer treatments, I had many of the same thoughts, panics and frustrations that she describes.
This is my first attempt at re-blogging someone else’s post, I hope it works!
Update – a few minutes later:
Well, it didn’t work, and it should have, and I’m not sure why, and it’s late. Here is a link to Tammy’s post.
Whether it’s poop, pee, gas, snot or saliva––I’d like to choose when, in whose presence, and where it exits. Ah well…such is the life of an Ataxian. Fortunately, I have understanding family and friends. Another reason I love Skeeter–she doesn’t care how gross I am.
I watched a movie the other night (of course). Harry Belafonte’s character and Anthony Hopkin’s character were having a drink and trading barbs about the effects of aging.
Harry Belafonte: “At least I don’t have to get up three times a night to pee.”
Anthony Hopkins: “At least I get up.”
I’m not quite that bad, but I’ve come to look at the bowel and bladder more globally, like the nose and throat–increased sensitivity. I haven’t had major issues yet, but I sense they are coming. Perhaps it’s advancing age or the Ataxia, but I’ve noticed increased bladder sensitivity and decreased capacity. I’ve always had a capacity less than many people, particularly males. Like I needed to get worse? Lying awake at 2 am, trying to convince myself to just go back to sleep, is a waste of time. Get up, don’t fall and just do it, Tam (don’t think this is what Nike had in mind).
Consequent to the increased sensitivity, I (probably most people already know this):
–Avoid large volumes of fluid from early evening on (tea, caffeine, and wine are big offenders). I do have to get my wine in though.
–Go to the bathroom before bed (duh)
–Get up during the night whether or not I feel the urge.
–Hit the bathroom before I need to; Not having the “not now” ability I used to, I don’t dawdle.
–Never pass up a bathroom (duh).
–Never get into a car without going to the bathroom (double duh)
Depends, Rely, Dignity, Sillhouette? Nice try at confidence branding (that ship has sailed). The various products out there make me much easier to rescue on a long scoot, should I underestimate my bladder capacity. One thing about Ataxians that indirectly affects “untoward exits”. First of all, hurrying puts us at greater risk for falling. Secondly, we just don’t move as skillfully as we used to. Consequently, we have to compensate using some anticipation, rather than shouting “Get out of my way!” Now THAT’S embarrassing.
I go before Earl occupies the bathroom, before the grandchildren wake up and come in our room, before guests arrive, before getting on a plane, before going out–before just about anything.
The lesson: Go to the bathroom, blow your nose, check your teeth–Just do it. And have understanding friends.