TMI?

Most of my readers know that I have suffered the symptoms of balance and walking issues, falling, depression, personality changes, and loss of cognitive function.  I saw a dozen doctors over a period of at least 4 years with no results.  Finally, this year, I went to a new neurologist who looked at an old brain scan (taken by MRI 18 months earlier) and saw what previous doctors (even a neurologist) missed: enlarged ventricles in my brain.

The first question he asked seemed bizarre to me: "Are you incontinent?" That is a very personal and embarrassing question and I didn't want to answer him, but I did.  It was then that I learned that this physical condition is one of a triad of symptoms of a brain disorder more common in the elderly: Normal Pressure Hydrocephalus. It is happens when there is a buildup in the brain of excess cerebral/spinal fluid.  As the ventricles become engorged, they put significant pressure on the brain from the inside. If untreated, it can lead to dementia.

I have always felt very grateful to have the cognitive function, memory, and thinking abilities I possess.  Then, I started to lose them.  

The first to go was my emotional stability.  I lost my best friend in 2016 and by 2017 I was plunged into the abyss of a depression worse than any I have ever experienced. It was so severe that I literally lost my will to live.  My family didn't know what to do.  I was either sobbing uncontrollably or raging angry all the time. I knew God was there because of my faith in Him, but it was difficult to feel the Spirit, my main source of comfort and understanding in the past.

I had also begun to fall (probably since 2014) and I was forever banging up the sides of my car trying to park in the garage.  It finally got to the point that my car spent more time in the body shop than it did at my home. My kids wanted me to stop driving, but that was my main link to independence. (This is not my car, but it is an example of the damage I kept inflicting.)

In January, 2017, after a bad fall in the bathtub, I called my son, Shawn - who lived in Texas - and asked if he and his wife, Retta, would consider moving back to Arizona to live with me.  I felt unsafe living alone anymore.  I had a little money from the sale of my Snowflake home and proposed that we buy a large home together with a separate apartment for me.  I would make the down payment and they would make the monthly payments. He spoke to Retta and they agreed.  Retta flew to Arizona just a week or so later and we went house hunting.  We found a home that would work in Gold Canyon, AZ and bought it.  By April 1, we moved.  Shawn joined us shortly after that.

I noticed the severe emotional changes immediately.  I also noted the struggle I had to walk and keep my balance.  Next, I notice my cognitive function slipping.  I was asked to speak in Sacrament meeting in the summer of 2018.  I have always been a competent public speaker and never wrote out my talk. I'd use very brief notes.  On this occasion, I lost my place; I reached for words I had known and used for years and they weren't there.  I stammered and stumbled  It was an awful experience.  People in my new ward had never heard me speak before.  I'm sure they thought this poor bumbling old woman had lost it.  I've never been asked to speak since, nor have a had a church calling in that ward.

I had been working out at a local gym.  I'd lost 30 pounds and was in the best physical shape I had been in years.  That same summer, I began to notice that my workouts were more trying than they had been.  If often couldn't finish a set.  I also started to lose my balance in the water during exercise class in the pool.  On one occasion, I was so off balance that I couldn't get my feet under me.  I was terrified.  I thought I was going to drown.  Meanwhile, the course instructor just kept droning on and didn't even notice I was struggling.  I was at the back of the class so others didn't notice either.  I finally made so much noise splashing, that one lady turned around, said, "Oh, my goodness!" and helped me get to the side of the pool.  I never went back.

Labor Day weekend, 2018, I experienced my first severe attack of vertigo.  The room spun around me and I thought I was dying. That same night (Friday) I had vertigo while lying flat in bed - wave after wave of it.  I woke my son at 1:00 A.M. and he took me to the E.R.  Thus began my fruitless almost two year search for answers.

Things went from bad to worse.  I developed double vision and blurry vision, uncontrolled coughing, headaches, hearing loss and loss of fine motor skills.  My short term memory was the pits!  I finally realized I could no longer drive safely and I got rid of my car and my driver's license (which made my children happy.) I spent most of my time in bed or in my recliner.  I couldn't read, write comfortably on my computer, eat without spilling, cook or bake, draw, write, or do any of the things I used to do. Even my antidepressants didn't help. I had a complete emotional breakdown in 2017 and was diagnosed with depression, anxiety, and PTSD.  I had been in counseling since then (and I still talk to my counselor once a month.)

In 2020 I was finally diagnosed.  In July, they performed a lumbar puncture and removed almost a liter of spinal fluid.  Within an hour I was walking and balancing better than I had in 5 years. The doctor recommended surgery to implant a shunt to drain the excess fluid. The procedure wasn't enjoyable, but the freedom I felt afterward was exhilarating.  The doctor recommended surgery

On August 12, 2020, I had surgery to implant a shunt into my brain to relieve pressure from too much cranial/spinal fluid. They made an incision behind and below my right ear and drilled a small hole in my skull.  They implanted a small computer with a catheter going to the shunt in my brain.  They also made an incision in my belly and pulled through a small catheter to drain the fluid into my abdominal cavity. 

I have had some relief, but not as much as from the spinal tap.  The neurosurgeon set the shunt to drain slowly, so I have to be patient (a quality I have been developing!)

I will have my sutures removed on September 4 and I begin physical therapy on the 9th. I am hoping to regain my strength and stamina physically. I am already feeling empowered mentally and emotionally.  My spiritual rebirth is thanks to Jesus, the Master Physician, not the surgeon or medical team (although I am grateful to them all.)

The Apostle Paul wrote to the Romans "Not only that, but we glory in tribulation. . . " I am honestly and humbly grateful that the Lord loves me enough to allow me this condition.  I have learned patience, and hope, and that peace which passes all understanding.  Because of my impaired cognitive ability, I was making decisions that would have led to eternal disaster.  The Lord saved me from myself.  When I went into surgery, knowing I might not survive, I did so with peace because I felt that, if God chose to call me home, I was as ready to go as I have ever been.  I am praying that I never forget the lessons of these past few years and the miracles wrought in my behalf.  I pray I never lose that peace of mind and spirit and that, when God does call me home, I will be ready.  I want to hear Him say, "Well done, my good and faithful servant." That will make all the losses and crosses disappear  Just the thought of it lifts me up closer to Him.

I praise and adore Him.