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madam_curry

About 12 years ago, my mom (then about 70) started complaining about fatigue and weakness in her legs. She seemed to shuffle when she walked. The doctors came up with nothing, except to put her on antidepressants which she refused to do.

Sometimes she would drop to the ground with no warning. She had trouble organizing her thoughts and could no longer figure out the answering machine. She'd get lost on the familiar way to the doctor. She 'advanced' to a walker and eventually a wheelchair. When transferring from the wheelchair to the car, her feet would take tiny steps.

In early 1998, her primary care physician, Dr. S. Steve Watson, wrote "can't walk to mailbox, gets 'stuttering steps', legs fold under, get frozen to ground, looses urine sometimes". He referred her to specialists. James W. Aston (ambulatory care center from Southwestern Medical Center at Dallas) wrote that she has gait difficulty, urge incontinence, and that her MRI revealed enlarged ventricles. His 'impression' was "Progressive gait disturbance of unknown etiology". His "Neuromuscular Clinic Follow-up visit" notes were signed off by Wilson W. Bryan, M.D. Associate Professor of Neurology.

She was moved up to Portland to be closer to her family. Her new physician ordered another CT scan. He explained that her ventricles were enlarged because her brain had atrophied. He diagnosed her as having dementia. My brother and I moved her into an Alzheimer's facility in November of 2002. She required assistance with dressing, toileting and bathing. She had neither urinary nor bowel control. She required a Hoyer lift for transferring. She could not carry on a conversation, unable to put two words together.

In January 2005, my brother saw a program about NPH and wondered if that was the source of mom's problem. By August 2005 we had taken all the necessary steps to get her into a neurologist, neurosurgeon, and hospital for the lumbar drain and shunt surgery.

In September, the change was phenomenal and miraculous. She could remember nothing of the prior 9 years. She thought it was 1996 and couldn't believe she lived in Texas for 4 years and Portland for almost 4 years. She referred to the current year (after being corrected) as 'two zero zero five'. Two thousand five was just too weird. She asked 'whatever happened to Mary Kay Letourneau' and boy did I have a story for her.

Mobility problems were aggravated by a broken ankle-- she was determined to walk but fell. She was extremely frustrated waking up from a 9 year nap to find herself in an Alzheimer's facility! After her ankle healed, we moved her to an adult family home near Seattle. This didn't work out too well because the caregivers didn't speak English and didn't follow through on instructions given by her physical therapist.

In June 2006, she had 8 days of inpatient rehabilitation and was discharged into another adult family home. The caregivers speak English and follow through with mom's PT. She can now transfer, unassisted from wheelchair to bed/car and back. She can walk 80 feet with a walker. She can dress and groom herself. She really likes where she is staying and her progress is accelerating.

A year after surgery, she is fully functional cognitively. She reads the newspaper every day and devours non-fiction. She enjoys visiting with old friends and talking on the phone.

As peoples' experiences suggest, responses to shunt surgery are extremely varied. A lot of peoples' lives are miraculously changed. A number of people improve somewhat and others have side affects. A few die from complications. My mother is somewhere in between. I am grateful for the progress she has made, and look forward to her walking again.