Symptom or Side Effect?

[Jo S.]

LOL! I know exactly what you’re talking about. It’s really difficult to determine whether symptoms are from the disease or the treatment. And if we can’t determine that, how can our doctors?

[Renée Osborne]

My husband is suffering from these same issues… Parkinson’s equals low blood pressure; medication equals low blood pressure. I discovered a blog by Howard Shifke. He’s also written a book “Fighting Parkinson’s… and Winning”. I’ve ordered the book and anxious to read it as its focus is on how he cured his Parkinson’s symptoms with diet, exercise and mediation, NOT medication! Check it out! 🙂

[Robert]

Good topic Robert,

My Parkinson’s started as just a hint here and there.  The first Neuro said it is early, no meds and come back in a year, earlier if you think you need to.  And then a couple months later, my Parkinson’s pushed me off the side of the road and watched me rolling down the hill and the second Neuro said possible MSA!  My reaction.  I don’t think so.  The third Neuro said just stiff and slow PD and said,  “Here, take these magic Sinemet pills.”  They worked.

I spent the first year visiting my Neuro six times to adjust the meds and their interactions with other meds I was taking for what we thought were bladder and prostate problems.  We actually reduced the amount of Sinemet.  We changed bladder meds several times. I eventually had a complete workup for bladder and prostate problems and found that there were no bladder and prostate problems.  All the issues with my “flow” works were related to the PD.  The brain and the plumbing valves were not talking to each other very well anymore.  So no more prostate or bladder pills.  And no more pills battling each other to see which could lower my blood pressure the most or which could be the first to make me feel the lousiest each day.

Now it is relatively simple for me.   Without dealing with the interaction of the Sinemet with the bladder and prostate meds, we could focus on what the PD needed.  More Sinemet.   My PD demands Sinemet.  So I am on a high dose of Sinement 24 hours a day 7 days a week.  So long as I flood the PD with Sinemet it is happy and leaves me mostly alone.

I do take one other pill, Midodrine, for the side effect of low blood pressure.  But that pill and the Sinemet get along well.

So now I take just two pills for the PD, and I sometimes feel better than I have for years.

But, it does cross my mind frequently that I sure felt a lot better before I “started taking” all of these pills!

I must admit that “started taking” and “needed to take” aren’t the same.   I do believe the Sinemet is a magic pill for me.

I cannot imagine what PD was like before the discovery of Sinemet.

We have a family agreement that we do not blame my PD diagnosis for things that are different.  When I am late for my meds, I am “off” if you know what I mean and look awful and awkward. When that happens, I have a phrase I use with my family when they see me struggling and ask if I am alright.  I just say,  ” You do know I have spinal stenosis”  In doing all the workups over the years I was found to have osteoporosis and mild age related spinal stenosis.  I was always tickled by the phrase “spinal stenosis”.  It sounds so serious.  But I think it is more like getting grey hair.   That is my reminder to my family, that while the magic Sinemet pills do work pretty well, I do indeed have this PD thing, and am not the same as I was a before.

I am completely dependent on the meds.

Best regards to all.

Robert C.