Some of my followers know, and some may not, that I have Parkinson’s disease.  I’ve been aware of something amiss a lot longer than my official diagnosis several years ago.  Up until recently, the shakes have been behaving themselves with the help of medication.  Now they seem to have said, “We’re not buying that medication crap anymore.”

Background

Parkinson’s is a sneaky disease in that it is very difficult to diagnose early on.  A person can have very minor symptoms for years and not attribute them to Parkinson’s.  I am one of those people.  I noticed a sudden tremor in my right hand on very rare occasions, usually during a stressful situation.  The shaking would only last a few seconds but it was strong and very noticeable.

After a few episodes, I went to my doctor and told him about it.  He gave me a quick “hold out your hands, grab my hands, you’re okay” exam and that was that.  He wrote it off to the stress of the situation I experienced.  That didn’t sit well with me, but I couldn’t dispute his diagnosis – I’m an engineer, he was a doctor.

Over the years the shaking got worse and more frequent, mostly in my right hand.  I decided I had better hedge my bets and learn to write left-handed.  I am fairly ambidextrous due to the nature of my work which requires a lot of left-handed tasks.  But, I wasn’t all that good at writing.  I began to practice and finally got it down to where it was hard to tell my right-handed writing from my left.  I thought all was well and I had a leg up on ol’ Parky.  Not so.

Out of the blue one day, I noticed my left hand started shaking and the alarm bells went off.  I pushed my GP to refer me to a neurologist to see what was going on.  I was finally told I have two types of shakes.  One is a “Parkinson’s at rest” shake.  Basically, it is a shake when my hand is resting and wants something to do.  In my mind, I see it as my left hand having attention deficit syndrome and it can’t sit still.

My right hand has what he called an essential shake which is neurologically related.  Lucky me.  Two different situations require different treatment.  This one, being neurologically related, is treated with the same drugs as are used to treat seizures.  The other one is treated with dopamine-based drugs.  Dopamine is the chemical in the brain that allows signals to pass from neuron to neuron to control muscle movement.  If the brain or body doesn’t produce enough of it, signals get lost.  I take what I call the Dopa brothers – carbidopa-levodopa tablets to help the problem.

But, as I said earlier, the drugs don’t seem to be working anymore.  My shakes have increased in frequency and intensity over the past few weeks.  So much so, I ask my neurologist for a referral to a motion specialist.  My guy is only a general neurologist for mild cases where the drugs control things, and for Alzheimer’s or dementia type problems.  I’m at the point now, I need someone more specialized – a motion specialist.

New Options

I’ve done some homework on this issue and what I found isn’t all that exciting.  There are more drugs that could be used but their cost is very high.  There is a procedure called deep brain surgery that is similar to a pacemaker for the heart.  They probe your brain and insert thin leads from your brain to a gizmo implanted under your skin at the shoulder.  Then they play Dr. Frankenstein and tweak the gizmo to get the best results relative to your shakes.  I’m not sure the voices in my head would like that? 😁

The internet provided an alternative to playing with my brain in a new device you wear on your wrist.  It looks like a sports watch but with a unique purpose.  It senses the shake pulses in your arm and puts out counter vibrations or signals to cancel or reduce the severity of the shaking.  I read what little I could find about the device, which wasn’t much.  They want you to sign up for their people to call and harass you to death before they tell you much.  I did see one piece of information that took me back.  The copy said they would help the client with monthly payments.  Really??  That makes this gizmo sound expensive as hell.  And what if I need one on each arm?  Can I switch the device from arm to arm?

The answer to question one is you have to buy two devices.  Sell your house or give us your firstborn and we’ll gladly sell you two.  Wow.  They’re making me chose between my house and my firstborn.  That’s just plain rude.  The answer to the second question is no, you can’t switch from arm to arm.  Each device is tuned specifically to one arm only, which in my case would dictate two devices.  I haven’t checked with my insurance company yet about paying for these devices, so that is an unknown at this point.

My appointment with the new guy is tomorrow at 2;30 pm.  I’m more than a little anxious as to what he will say or suggest for treatment.  I’m okay with new meds as long as the cost is not obnoxious.  Some of the specialty meds I take are very expensive during most of the year.  When I fall into the gap (don’t get me started on that) they are outrageous in cost.  I can’t compare those costs with the DBS option or the device option yet.  Hopefully, I will get solid answers tomorrow.

For now, I have to face the fact that ol’ Parky is in control and I just have to put up with his shit.  Some days he is lazy and leaves me alone for long periods.  Other days he is on me like ugly on a duck.  Right now, I’m having difficulty typing this post.  Last week when I was painting, I could do the trim cut-in without shaking at all.  I didn’t tape the ceiling off when painting the walls.  I did tape the woodwork trim as it is much more detailed.  Just a few days later, I couldn’t write my name with either hand.

I know he’s going to win this fight and that pisses me off, but he’s not going to win without getting a bloody nose himself.  I’ll fight as long as possible, and  I’ll fight dirty if I have to.  No one said this was to be a clean fight.

#parkinson’s
#parkinson’stremors
#dbs
#calawristband

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