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45/27

August 3, 2016

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I’ve known I have Parkinson’s for almost 17 years.  I know I had some of its  symptoms, in mild forms, for years before that.  After diagnosis, I soon started taking the primary medication for Parkinson’s.  I first tried a non-primary med but it put me to sleep at inopportune places  …like on the freeway.

 

Over these years the Parkinson’s “progression” was rather slow – which was fine by me.  With the medication, the symptoms were not that hard to live with.  I actually got rather used to them.  If I was working on a project I would often “miss”taking the meds and just keep working.  I found I didn’t need the meds for the first couple hours in the morning.  I would tailor the meds for what I was doing that day so as to try to have them working at their peak for the scheduled meeting, event, whatever.  In essence, I ignored what the label on the med bottle said – take one hour before a meal or 2 hours after a meal.  I generally took with the meal.  It was simply simpler.

My lack of following the rules was a bit confounding to my doctor.  He even tried to help by showing me how to set the timer on my phone.  He claimed the drug was less effective when taken with a meal.  It maybe was, but it was effective enough   …at least for me   …at least until now.

The Parkinson’s has now progressed past the point of working effectively regardless of when I take the medication.   A couple months ago my doctor recommended a different med – a new one – which is really just the old one put into time release capsules.  For this capsule invention the drug lords want an arm and a leg.  Not feeling especially eager to give such, I put off starting it.  I tried to be super diligent with following the rules of intake.  While there was some improvement and could be more, I decided to go ahead and try the arm/leg drug to see if it is worth the cost.   That was about three weeks ago.

Pause button.

Now I actually have another boring medical story running at the same time:

I had for years had a heart that would, on occasion, rev up and try to see how much blood it could pump as if in a race.  Long story short, heart doctor went into the heart and zapped the nerves causing this.  That was several years ago.  I have not had a problem since.  How/if this has relevance to today’s issues is yet to be determined.

With the above, I have low blood pressure (a heart issue).  Without Parkinson’s it’s not that big of a deal.  With Parkinson’s it is because Parkinson’s lowers one’s blood pressure   …so do the drugs.

This is where things have gotten complicated.  As I have upped the medication, I have had low blood pressure issues.  So while I’m trying to determine the optimal dosage and timing I have had to deal with some increasing blood pressure issues.  It seemed the more I tried to maximize the drug’s effectiveness, the more blood pressure issues I was having.  It was a bit discouraging.  Saturday, my nieces wedding day, was very discouraging.  Monday went well.  So did Tuesday   …until the evening.

Tuesday evening I took the Parkinson’s meds at 9PM.  I took my blood pressure – 96/63 (standing) – lower than ideal, but I’m used to it.  I was hungry as I hadn’t eaten dinner yet, but I couldn’t eat (according to the rules) until 10PM.  Xerx and I went for a walk (exercise – another rule).  Came back an ate around 9:45 which is about the time the meds peak in their effectiveness.  All was good.  The perfect (according to the rules) evening.

A little after 10 I was sitting at my desk and started feeling light-headed.  I thought, “Uh oh.  The light-headedness is suppose to only be when standing.”

Knowing doctors always want proof, I  grabbed the blood pressure monitor and stood up.  The first reading – 67/37.  Then 50/31.  Then 45/27.  I wasn’t feeling good about this on a number of fronts.

Thankfully it did as it has to date and started going back up.  I was fine, but that was pushing it.

Later, as I was heading to bed and thinking about how I needed to really follow the medication/meals rules to avoid things like this, I realized the problem was the rules!

Start with low blood pressure.  Lower it more by adding Parkinson’s.  Lower it more by taking Parkinson’s meds.  Add exercise – The best types of exercise for lowering blood pressure include walking…   I didn’t know this until I googled it last evening.  To top it all off, add a meal – a meal eaten at the right time, according to the rules, that did not impede the medication’s blood pressure lowering effectiveness.

Put this all together with perfect timing and one can drop ones blood pressure by 51/36 in a matter of minutes.  I did.

I have Parkinson’s and heart appointments at Mayo tomorrow (Thursday).  Appreciate any words you come up with if you’re one of those go-to-God types.

In the meantime, I’m going back to what has worked so well for so many years – meds with meals.

It’s simpler   …and safer.

 

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