Surviving the Crazy Twins

My struggle with the crazy twins that haunt me: Bipolar Disorder and Alzheimer’s Disease.
Large Luxury House

A large custom built luxury house in a residential neighborhood. This high end home is a very nicely landscaped property.

I first noticed it while going door to door in my fourth and last campaign for House District 37 in 2012.  Because the district was very competitive, every two years I always had to ring thousands of Republican and unaffiliated doorbells between April and election day in early November.

Under the best of circumstances, campaigning in this fashion is always time intensive.  If I got to 100 houses during an 8 hour Saturday, I was doing well.  Fewer on weekdays after work, even if I stayed out ’til is was nearly dark on the long summer days.

But after having done so much of it, it wasn’t hard for me to sense that it was taking longer to go from house to house than it had during previous campaigns.  True, it was never a short walk between houses because cutting across lawns was, according to my mentor and master campaigner, David Balmer, strictly verboten:  “It’s ok for the mailman.  But you don’t want to let your constituents see a politician walking across their manicured, suburban grass.”

So, I would take the sidewalk to the drive way, up the drive to where the walk forked off to the front porch, up (usually) a few stairs, and ring the bell.  Then wait to see if someone answered.  If they did, especially on Saturdays, they might want to talk for several minutes.  And then reverse the process to the next house.  Again, under ideal circumstances, slow going.

But try as I might, I couldn’t walk as fast as I had in prior campaigns.  It felt like there was stickum on the bottom of my shoes.  And, just as weird, was the fact that I wasn’t comfortable walking down even a few stairs unless there was a handrail.

“What was going on?  I was an expert alpine skier, wasn’t I?  I could ride my mountain bike on rugged single track trails.  I’d backpacked all over the state on rocky, rutted trails.  Heck, in my youth I had been a technical rock climber.  And now a few stairs were making me nervous?”

It hit me again with equal force when the session got underway the following winter.  Legislators interact with lobbyists routinely; I was no different.  Many of them are very professional looking women who work the marble hallways of the Capital all day (and sometimes late into the night) in stiletto heels; it looks brutally uncomfortable.  But, try as I might, I couldn’t keep pace with these women as we walked the 75 paces from the House chamber to my office.

A woman several inches shorter than I.  In high heels.  And I couldn’t walk as fast as they did.  What’s going on?  Frustration is scarcely adequate to describe my feelings.

I began talking to my doctors.

Maybe the titanium hip that had been put in several years before was going bad.  The orthopedic surgeon who did the implant x-rayed it and tested my blood for some sort of titanium poisoning.

Nothing.

The same result when I talked to my GP at an annual physical.

I see a psychiatrist about once a quarter for my bipolar condition.  I complained to him.  “Can my medication be making me walk like this and not feel secure going down stairs?”

He did a simple battery of physical tests, like balancing on one foot and walking a straight line down the hallway in his office while he watched.

Again, according to him, nothing.  (After we later learned what was really going on, he repeatedly offered a “mea culpa” for his oversight.  He’s a brain doctor after all.)

But after complaining a few more times in subsequent visits, he finally decided I needed to see a neurologist and gave me a referral.

It took a while to get in, but the appointed day finally arrived: my wife and I sat in the waiting room.

It didn’t strike me as odd until later, but the doctor didn’t have his nurse escort us to an exam room for the usual preliminaries.  Instead, he personally met us in the waiting room and watched me get out of my chair and walk across the room.

I’m convinced he knew what I had even before I got across the room.  Of course, some tests had to be run to confirm his impression:  brain imaging followed by a spinal tap.  (Take it from me, you haven’t lived until you have had an evening to think about a spinal tap before it’s done the following morning.)

But sure enough, the initial diagnosis was right:  normal pressure hydrocephalus (NPH).   Sometimes referred to as the “wet, whacky and wobbly” syndrome because of the most common symptoms. I’ll simply say that I had the first and the third.  And add that I hope to be able to avoid the second.

The usual treatment was what was prescribed for me:  another hole in my head to implant a shunt to drain excess fluid from my skull to my abdominal cavity where it is reabsorbed.

Has the shunt been a miracle cure?  Not hardly.  In fact, I have sometimes been resentful when I read stories of others in my situation that do seem to experience full recoveries.

But there is no doubt that the shunt has slowed the progression of the condition.

Thankfully, the wet has definitely improved.

Am I whacky?  I suppose some might say so.  But I contend that I’m still cogent.  At least I hope so.  And hope to continue so for a good while beyond what is my 66th year.

Unfortunately, I’m still wobbly, especially going down stairs; I religiously cling to the hand rail when one is available.  But I work out regularly and vigorously, including twice a week with a trainer.  He hounds me mercilessly on my posture, virtual posture Nazi.  And how could this possibly do anything but help?

NPH has made me more observant of the old people around me (I grow old…I grow old…I shall wear the bottoms of my trousers rolled.).  The stooped posture.  The shuffling, wide gait.  The caution at the curb.

It took the doctors years to figure out what was wrong  with me.  And I am certainly not alone.  The Hydrocephalus Association estimates that of the 700,000 American with NPH, less than 20% receive an appropriate diagnosis.  NPH is commonly misdiagnosed as Alzheimer’s or Parkinson’s disease.  Or simple aging.  But the facts are that it is one of the few causes of dementia that can be treated.

The penultimate take away?  If you, or a loved one, is wet, whacky, and wobbly, don’t rest until you get answers that make all the pieces of the puzzle fit.

And the last take away?  This getting old stuff isn’t for sissies.