Sunday, December 30, 2012

Multiple Sclerosis and Dementia

A cortical variant of Multiple Sclerosis characterized by progressive dementia may be more prevalent than previously suspected and may be an important factor in nursing home admissions in this group of patients, or at least a Texas A&M University study back in 2005 concluded.

As one family living with MS for 23 years, “we don’t need no stinkin' studies.”

When I ‘just happened’ to return home shortly after leaving to find flames coming from the kitchen stove about 15 years ago while Patti sat oblivious at the kitchen table eating lunch – I needed no tests, scans, or neurologists … MS cognitive symptoms no matter how mild they are labeled by a neurologist are dangerous to a family’s health.

After 23 years, I better than anyone understand the fine line between hope and denial that is the life thread of living with Multiple Sclerosis as a family.  Who wouldn’t clutch at ‘MS brain fog’ instead of ‘MS dementia’? Except that one can kill you and those around you.

Reading a news story two mornings after Christmas about a local man who was found dead less than a football field from his home I could not help but remember the pivotal moment when home care ended for us.

In the tragic news the man was in the early stages of Alzheimer's disease and "unfortunately the weather conditions — the rain, the snow and the wind — were just factors that were against him."

In our story, eight winters ago … an artic chill throughout the house awoke me. Sitting in our wide open front door were our three cats staring at Patti outside in sub 0˚F (sub -17˚C) weather in her wheelchair dressed in just a nightgown. Her wheelchair had crashed to a halt in a bank of shoveled snow where our sidewalk turns. I have no idea how long she had been out there and when asked she responded something to the effect she needed to walk the cats. ???

Just suppose I had not returned home when I did, suppose the wind had blown the door shut?

Dementia is a scary word and we seem to go out of our way to invent diagnostic euphemisms.

I pray families can find the balance between hope and the safety of those they care about. 
Patrick Leer
Caregivingly Yours, MS Caregiver @

1 comment:

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