Neuros

I went to a neurologist last week.  Prior to this, the last time I had been to one was was two and a half years ago when I went back to see the neurologist who had treated me at the University of Louisville where I was taken after my stroke.  It wasn’t my idea either time.  Both times it was the suggestion of my primary care physician, whom I hold in high regard.  It was at six months post-stroke that spasticity had set in and was progressing rapidly.  My PCP was at a loss to explain it and made the referral to the neurologist.  I wasn’t optimistic that he would be of any help, since by this time I had done my own research enough to realize that there was no effective treatment for it. 

The trip back to Uof L hospital brought back many memories for Polly and me – mainly for her, since it’s all pretty foggy to me.  She remembered the 100 mile ride there with her family while I went by helicopter; she remembered being directed to the stroke ICU and being greeted by the hospital chaplain and the stab of fear when she thought I had died; she remembered crying in the bathroom, but having to put a brave face on for me and our children.  She remembered the kindness of the nurses and the cold unhelpfulness of the neurologist.  That hadn’t changed when I went back to see him.  Regarding the cause of my spasticity, being that I had regained almost full control and strength in my left side, he hadn’t a clue.  He actually shrugged in bewiderment, with his open palms in the air.  He did mention baclofen and botox, while admitting that neither was effective.  It was at this time that I realized that neurologists don’t seem to be interested in anything outside the brain.  It’s as if the effects of a brain injury on the body are beneath their consideration.  Which, of course, makes no sense, because a brain injury affects all parts of the body to some degree.

So now, three years post-stroke, that neurologist has gone back to Pakistan, or maybe India, and my spasticity has strengthened and spread all over my left side and up into my neck, affecting my voice and ability to chew.  It’s even creeping over to the right side of my face, so that I can’t feel my lips, and must put my hand to my mouth when I eat to ensure that food isn’t dribbling out. 

So, my PCP, at a loss to explain or help, suggested I go to a local neurologist he thinks highly of.   I was reluctant at first, believing it to be a waste of time, but finally decided it couldn’t hurt, and who knew, maybe this guy by some miracle knew of something out there I hadn’t come across in my reading.  But miracles don’t really happen in real life and the new neurologist, while experienced and nice enough, had nothing new to offer.  I told him that I still work and have to drive considerable distances as part of my job, so I can’t take baclofen, which causes drowsiness, and as far as botox injections, where would I even start?  Neck? Shoulder? Arm? Fingers? Leg? Toes?  He offered to give me a perscription for anti-anxiety and pain medication, which I guess represents a strategy of if I stay stoned all the time I won’t care so much about being unable to move.  I declined the offer.

So, I continue to fight the spasticity, although it is exhausting, and I think about neurologists and how frustrating it must be to be one and have no effective treatment to offer those who come to you for help.  Or maybe they don’t care.  Who knows what goes on in the minds of such a seemingly strange group of people.