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Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

Our frazzled reality

Our frazzled reality

It seems like yesterday that we received confirmation of THAT diagnosis ... MSA. The diagnosis that turned our life upside down even more than the initial diagnosis of Parkinson's.  "Okay, so I don't think it's Parkinson's disease but one of the diseases in the Parkinsonism umbrella..." says our faithful physician. "It's not good, but I'll be here with you every step of the way". Enter Multiple System Atrophy, the "thing" that consumes our daily life.

Multiple System Atrophy, what I call the rogue cousin of Parkinson's, is a degenerative neurological disease that controls your autonomic body functions, the involuntary things like breathing (great), blood pressure (wonderful) and muscle control (see where this is going?). Treatment includes medication and changes in lifestyle with the goal of managing the symptoms, not the disease.

There is no cure. The condition progresses gradually and eventually leads to death.

We've experienced (I say "we" like I walk in my love's shoes) so many changes over the last handful of  years. The first challenge was syncope, or passing out/fainting. Can I tell you how many times he fell into/thru walls, on top of me, and even on the control desk at work? That was an exciting phone call from the facility as your love is being driven to the hospital in an ambulance. The kids even became experts in seeing the signs that dad was going to DFO (done fell out to those of you not in the know). The syncope was attributed to a rapid rise and fall of blood flow to the brain. We heard terms of "vasovagal" and "neurocardiogenic"; we had tilt-table tests and CTs, adjusted blood pressure medication and took constant BP readings.

Within a few years came loss of sense of smell. We literally spent days sticking horrible smelling things under my love's nose and asking, "you can't small that? UGH!" It was actually pretty funny as we selected the most foul smelling things and he just looked at us and shook his head. Occasionally, rarely, he would get a whiff of something and we'd get so excited, like watching your child take their first steps. And then like that (poof), it's gone.

The changes in voice popped up and we all had to giggle at least a little bit. The high pitched squeak of a little old lady danced with the deep whisper of a 1-900 phone operator. I always wait in anticipation of "who" will answer the phone when I call. We giggle and compare the high, squeaky voice to that of my sweet mother-in-law bringing back wonderful memories of a great lady.

The loss of vision was as eye-opener (pun intended). "Hon, I literally can't see out of my left eye ... it's like dark and fuzzy." Off to the ophthalmologist for an evaluation that determined that the retina had minimal blood supply, thus a repair was in order. Solution? Nada, zippo, donut. The culprit? The blood vessels decided to take a permanent vacay, "most likely" a side-effect of MSA.

The other complications just show up, no slow progression, just BAM! The balance issues and slurred speech are like that of a drunk, the ongoing challenge with eating/swallowing, cognitive concerns, and a variety of other issues that no self-respecting caregiver/wife would discuss. Every day seems to bring a new adventure that causes us to giggle, cry, or both.

Sometimes you don't realize you're drowning when you're trying to be everyone else's anchor. - joyofmom

Do you have your papers ready?

Do you have your papers ready?