Neurology Update

Annual check-up with Dr. B, the neurologist.  No surprises.  As expected, his exam showed slight improvements in strength and sensitivity.  Nothing dramatic, but that’s okay.  I’ve been telling people that at the rate I’m improving I expect to be completely recovered by the time I’m 150 yrs old.

I’m thankful every day that I’m being treated at UAB, where there's one of the very few clinics in the country that specializes in Transverse Myelitis.  There’s a Facebook group for TM patients that I dip into and so many of those folks are floundering.  They’re dealing with neurologists who’ve never seen the condition, don’t know how to diagnose it, don’t know how to explain what it is or what their options are.  I worry about them all the time and wonder if there isn’t more that I can do to help.

Dr. B reinforces that exercise and physical therapy are absolutely critical.  As he told me years ago, his goal was to keep me from getting worse, not to make me better.  That is, his objective was to clear up the inflammation that was destroying the myelin in my spinal cord.  He can’t repair the damage that’s been done.  Improvement is up to me and that means daily exercise to keep the muscles healthy and to retrain the nervous system to find new pathways around the damaged parts.  There is no guarantee that daily exercise will enable me to walk more easily in the future.  It is guaranteed that lack of exercise will make sure that I don’t.  Yes, it is painful and frustrating and tiring every day.  But the alternative is unacceptable.

He says that about 85% of his patients respond well to the initial five days of heavy dose steroids.  The inflammation clears up and they recover all or most of their function within 12 months.  Then there’s those like me, where the inflammation hangs on.  By the time the year of Cytoxan infusions finally knocked out the inflammation, the damage to my spinal cord was pretty severe.

That being the case, I’m doing quite well.  I can walk very short distances with a cane, and as much as a 100 yards or so with a walker.  I have limited use of my hands – can’t manage buttons, for example, but I can tie my shoes.  My guitar playing has improved considerably (thanks largely to the magical Josie guitar picks) and I’ve been laying down crude rhythm tracks into GarageBand that I'm adding vocal and harmonica tracks to.

I can stand long enough to do my half of the cooking, but I have to be very careful with knives because I won’t feel it if I cut myself.  Pain is constant from the neck down, worst in my hands, hips and thighs – it averages out to about a 5 on the 10 point scale.  I don’t take anything for the pain, preferring not to deal with the medication side effects.  I'm pretty good at putting my focus elsewhere.  I take 60mg of baclofen a day to help manage spasticity although I am still extremely stiff and have a variety of twitches and tremors.  (The nighttime myoclonus in my right arm sometimes results in my knocking Lynn on the head).  I sleep 9-10 hours a night, but fatigue is a constant.  While it doesn’t limit what I can do, it greatly limits how much I can do.

And I’m very happy with my life.  This is somewhat of a puzzle.  Depression is one of the most common and severe complications of the disease and that certainly makes sense to me.  It’s definitely reflected in the anguished posts from so many in the FB/TM group.  But except for two days in the first year, when my symptoms got dramatically worse, I haven’t had to struggle with depression.  I occasionally have bad, grumpy days, but they seem to me to be of the normal variety and almost never are occasioned by my various physical frailties.  Why is that?  How did I get to be so lucky?

Certainly I have tremendous advantages.  I’m financially secure.  I’m emotionally sustained by the three generations of women who run my life (Lynn, Marian, Josie) and the love of my siblings and my friends scattered across the globe.  With retirement, the daily stress of being responsible for and to people in my workplace is gone, but I still keep a hand in professionally with my work on the Metadata2020 project and my ATG column.  Today I signed on to help develop an MLA course on scholarly communication.  And now I’m able to spend time on developing the writing projects that I’ve only been able to imagine getting at for years. 

I think of Job’s trials, Satan stripping him of all his possessions and even of his family, in order to test his faith.  I'm not a Christian, but would I be able to maintain that Job-like equanimity in the face of the disease if it weren’t for those advantages?  What I have to bear seems slight compared to all that I still have. 

The emotion that washes me most often is gratitude.  I can't explain it.  So I'm even grateful for that.

Comments

[Ellie Phillipo]

So glad you're doing relatively well. I think of you and Lynn often. Ron's Parkinson's continues its march, but he's happy to see me every day. It's all I can ask. Gratitude.

[Joan]

Scott I'm so glad to hear you can play guitar again. There isn't a Thanksgiving that goes by that I don't think of you playing Alice's Restaurant. Keep up your positive attitude. Your an inspiration for me.

Love your cuz Joni

[Peggy Tahir]

I’m glad to hear you’re doing well and keeping a positive outlook. So happy to hear that you can play the guitar and have some writing projects! So happy you have Lynn and others close to support you. Thinking of you and wishing you all the best. Peg

[Ann Okerson]

Scott, this is an amazing posting. Thank you for sharing your journey and for being so upbeat. Ann

[Chuck Hamaker]

Thank you for sharing this.