Thriving with NPH – Dorothy Sorlie’s Story

Normal Pressure Hydrocephalus (NPH – What is it?)

A serene evening, a daring and frightful adventure. Can I swim, actually swim again? As I stepped into the river, the water was cool. I proceeded carefully and quietly, immersed myself, and then, with great anxiety, pushed off. With great determination, I went into my favorite breaststroke and frog kick. It worked! Finally!! Thank you, God.

nph, hydrocephalus, diagnosis, dementia, surgery

I am Dorothy Sorlie from beautiful West Central Wisconsin. My husband Jim and I have 4 families, 13 grandchildren. I am retired but in my previous life was an instructor at our local technical college – which I loved.

Beginning about three years before my surgery, when I was 73, I had difficulty processing most parts of my life which were slowly disappearing: interpersonal communication, reading, cooking, writing, walking, swimming, volunteering – a slow but sure withdrawal from life.  I even had to “sign” papers allowing my husband to sign my name. That was a real “Whoops” – life is ending.”

How did this incredible improvement happen? I knew something was wrong. We tried Native American Healing in Alabama, Diagnostic Chiropractic in Michigan, Eastern, Natural, Western. My PCP doctor never gave up, never told me to “Adjust, you are aging.”

Then – Magic!  My PCP sent me, once again, to a movement specialist, who referred me to a neurosurgeon who ordered a CT. His message was “We found it; it’s advanced.  I’ll make room to see you tomorrow.”

As we met with the surgeon, my thought was “oh – whatever.” The surgery was done very early Monday morning. I remember NOTHING the first two weeks. My son flew in from MT – I do not remember.

nph, awareness, pt, otBecause my condition was advanced, I was in a nursing home for several weeks receiving lots of excellent PT, OT, and speech therapies. They pushed, I worked and slowly, very slowly recovered.  Our families, our friends, our therapy dog, our medical personnel were right there for me – my support system. Today, I feel great. My husband thinks I am back 120% and suggests removing 20% would be a good idea.  It’s a MIRACLE.

One of several goals is to spread the word, increase awareness of NPH.  As one doctor told me “You need to educate doctors, too. This condition is often overlooked.”  During medical appointments, I kindly and politely tell staff about NPH – the “treatable dementia.” Amazing how many know nothing about NPH.  I always tell them I am an educator and the next time I see them, I will quiz them.  Laughter and appreciation occur.

Also, before COVID-19 dominated our world, I gave presentations to community organizations, small groups on symptoms, progression, and treatment of NPH.  Future presentations planned are now on hold.  2021 will be a better year.  I also work to raise funds and awareness through the Hydrocephalus Association’s WALK program, which this year, was virtual and through encouraging our State Representative Ron Kind to become part of the Congressional Hydrocephalus Caucus. The Hydrocephalus Association (HA) provides excellent support for all hydrocephalus patients and caregivers. The staff is incredibly responsive, helpful, and encouraging.  HA refers to NPH as the “treatable dementia” and estimates that only 20% of adults with NPH are correctly diagnosed and are instead considered to have Parkinson’s, Alzheimer’s, or “just old age.”

What I have learned from this journey:  increased appreciation for a life; understanding the impact of early dementia/poor health; knowledge about this previously unknown condition; when/how to create awareness.  My goal is to help others find an accurate diagnosis and treatment to avoid what I, and so many, have experienced.