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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.

Yep, we have shrinkage...

Yep, we have shrinkage...

Shrinkage is rarely considered to be a good thing, from George Kostanza's foray into the pool to the value of my savings account with a grandson. MSA shrinkage isn't any better.

Through all of the doctor visits we've had over the last couple of years, our doctor has always completed the same barrage of coordination testing, from the arms outstretched to the sides and touch your nose, to doing the motion of turn doorknobs (both directions), to the amble (unassisted) down the short hall with all of us waiting and watching the big guy like he's a toddler taking his first steps. He sways down the hall, shoulders hunched, wide legged and dragging his right foot and looking a tad drunk before making the short, little hoppy steps to turn around. Once heading back in the opposite direction, I see the frustration in his face ... parts of his brain realize his gait is funny and the other parts are saying, "Yeah right, not happening". 

Isn't the cerebellum cute?

Isn't the cerebellum cute?

A normal cerebellum fits snugly at the back of the brain near the brain stem (the junction of the brain stem and the brain). Divided into two separate halves, the cerebellum coordinates voluntary movement (i.e. posture, balance, coordination, and speech). While it's tiny in comparison to the rest of the brain, it's mighty in that it holds about half of the neurons that transmit information producing fine motor skills. When the cerebellum is damaged (in our case, shrinking), paralysis or intellectual impairment doesn't appear; instead, balance issues, movement that is slowed, lack of muscle tone, speech difficulties, lack of control over eye movement, difficulty in standing upright, an inability to perform accurate movements, and tremors.

Recently completing an MRI, the verdict was in, "Yep, we've got shrinkage" which wasn't a surprise necessarily based on Mr. Wobbly Legs, but also confirmation that this crazy,  unpredictable disease is alive and well in our life. Diagnosis is a challenge with the definitive diagnosis coming from a list of "red flags" including dystonia/involuntary movement, dysarthis/slurred or low-volume speech, dysphagia/trouble chewing and swallowing, visual disturbance/one retina already gave up, tremors, REM sleep behaviors, sleep apnea, cold hands/feet (and I mean Fricking Freezing COLD), syncope, and hypertension. Yep, we've got them all!

So where do we go from here? Down the same path that we've been traveling for the last handful of years. Currently, there are no drugs specifically that can influence the course of the disease. It's all about treating the symptoms, individually; with a lot of creativity and finger's crossed.

Shrinkage on the left, normal on the right

Shrinkage on the left, normal on the right

A day in the life of a service dog

A day in the life of a service dog

It's all about the bucket list

It's all about the bucket list