There are other ACEs that cross the BBB:

http://www.medscape.com/viewarticle/556014

I am following this thread with interest. I switched to lisinopril a few years ago from Vasotec for this neuroprotective reason. Altace is to be avoided if possible because it has some toxic long term effects. This drug may cause liver problems and should not be used by patients with pre-existing liver damage.

Lisinopril on the other hand is not appreciably liver metabolized and is excreted for the most part whole by the kidneys.

Today was another of those where I suddenly got a flash of "Hey! I AM doing better than I would expect! Twice this afternoon I cut a sinemet CR in two. Not bad.

Another change noted last night. A thunderstorm knocked out our power, wife was out for the evening, and it looked like peanut butter in the dark for supper. I threw caution to the winds, drove to a local restaurant in the dark, ate and returned home. In the last five years I could count the times that I have driven in the dark and alone on one hand.

Mazel tov! These little triumphs should serve to highlight just how much we lose to this horrid disease. It sure feels great to know that life's simple pleasures are not entirely lost to us forever. Savor every moment.

Rick could you please give us an update on your med regime now vs. before starting this drug. Also would you be willing to share BP levels pre and post. Like a brief data summary?

How many mg are you taking currently? I so want to try this but don't have chronic high blood pressure. I take it you no longer need propanalol and have stopped Amantadine?

Thanks! I am thinking of talking with my neuro about this and want some serious real world ammo.

You might be a poor white rat but you are an intrepid rat.

Laura

Laura-
I am currently taking one 100/10 generic LD/CD upon awakening (from 6:00 to 7:00 AM). Then it is one 200/50 generic CR of same every two hours starting with 8:00 AM with the last at 8:00 PM. Total Ldopa 1500 mg. But the last week or two I have started breaking the 2:00 PM and 4:00 PM in half which brings it down to 1300 mg. It also has pretty much eliminated dyskinesia, too.

I have mostly eliminated Requip and take a single 4mg tablet two or three times per week to stop leg cramps. I was taking 24 mg per day earlier this year.

I still take the propranderolol 40 mg, 3x daily. Since I had been taking it for several weeks before starting the perindopril, I thought it best, especially in light of my blood pressure.

Current BP is 149/102. Pulse is 62. It is early morning and I am running on coffee and the first med of the day. Some slight to medium DK says it may be time to break another pill.

I have not had a true "attack" in weeks (the totally incapacitating type lasting 2 to 4 hours which does not respond to PD meds. I credit the propranderolol and the perindopril, but I also am convinced that avoiding the insulin-stimulating carbs have been key. In fact, I would wager a considerable sum that a big, old jelly donut right now would paralyze me until lunchtime (get thee behind me Satan!)

To sum up, I continue to see wide improvement in all areas.

Laura-
Reread your post. Even though your BP is good, don't assume that it rules you out. I experienced a worsening of symptoms at first that may have been low BP. It would last two hours then everything was OK. By moving the dose to bedtime, however, I eliminated the problem completely.

Also, the suggested dose for BP is 8 mg daily. I am doing just fine on half that. And as MrsD pointed out, there are other ACE inhibitors to be tested as well.

Hi Reverett123,

Have been reading this thread with great interest. (This is my first post here.) Was dx'ed in May with YOPD after about eight years of mild symptoms. Haven't started meds yet, exercise keeps me going for now. Your comment about avoiding insulin producing carbs struck a cord. I was dx'ed with severe hypoglycemia (low blood sugar) 9 years ago at age 38. Then eliminated sugar, white flour, pasta, potatoes, chocolate, and alcohol. Kept to this diet for 5 years before starting new job. Within 6 months of lax eating habits began getting additional symptoms besides kinetic/postural tremor. And tremor plus handwriting worsened. Direct correlation? Over eating of sugar set off hypoglycemia and PD? Then strict diet kept symptoms very minimal, relaxed diet allowed PD to progress more quickly? I don't eat as much simple carbs as average person, but Will have to go back to strict diet and see what happens. What has your experience been that made you notice link? Thanks for this thread, hope you continue to see improvements on ACE med. Best wishes, Lin

Lin2-
Welcome aboard. Sorry you're here.
Sugar, etc might seem a little off topic for this thread, but then again...

Regarding what made me notice the link to insulin, it was a tornado. A couple of years ago, I was dealing with some major stressors. About the worst of a long string of bad ones. One night I found myself on the floor too weak to crawl. A couple of nights later, reports of a tornado approaching shot me full of adrenaline. I woke my wife and then collapsed completely. With an F5 twister bearing down, I couldn't lift an arm. Luckily the storm lifted, but I was left wondering about the vaunted power of adrenaline to give PWP super powers.

About the same time, I was having increasing trouble simply walking, especially first thing in the day. During all this a morning arrived when I could no longer stand. I was weak as the proverbial kitten.

My wife, in desperation, forced two potassium tablets on me. What followed was one of the stranger things that I have encountered. Long before those two tabs had cleared my mouth, my body somehow recognized them and began releasing what stores of potassium it had hoarded. How it knew, I have no idea. That it knew, I am certain. I was standing within thirty seconds.

This experience, understandably, led to some thinking. That led to the endocrine system, the most amazing part of the human body for my money. And I suspect, a major factor in PD.

I learned- Potassium is essential for nerve and muscle function. Too much or too little can stop your heart. So the amounts in your body are tightly controlled by a cascade of hormones such as aldosterone, angiotensin, and renin. But some of us produce too much. This can lead to the wholesale shift of potassium into the cells from the bloodstream.

This shift renders us unable to move and worsens our PD symptoms as well. These "attacks", as they are known, last from one to six hours and are most common in the afternoons. They involve a lot of bladder action and blood pressure swings.

Those of us who are born with or develop this vulnerability have certain things which act as triggers. The most common trigger is the insulin surge that comes from a high carb meal. The insulin causes the cells to suck up glucose. And potassium among those so prone.

So, what makes us prone? One thing is over-production of angiotensin. Perindopril seems to interupt that cascade.

But there is something more.

J Appl Physiol. 2004 Dec;97(6):2339-46. Epub 2004 Jul 16.
Levodopa with carbidopa diminishes glycogen concentration, glycogen synthase activity, and insulin-stimulated glucose transport in rat skeletal muscle.

Our "gold standard" medication can contribute to insulin resistance and increase the problems with the shifting potassium as we release greater amounts of insulin.

In other words, PD is a cousin to diabetes.

One other bit to add to this admittedly incomplete picture before I go- In 1973 the British Medical Journal publshed a paper on the then still new wonder drug levodopa-carbidopa. It was an investigation into what was known as the "On-Off Phenomenum". I will highlight the interesting bits-

From British Medical Journal; 17 February 1973 (Pg 373)

Levodopa has proved to -be safe despite many dose-
dependent adverse reactions at the start of treatment when
the dose is being adjusted to an optimal level. But with long-
term treatment two new problems have emerged. One,
which has been termed "oscillation in performance" or the
"on-off phenomenon," comprises rapid transient deteriora-
tion of the Parkinsonian motor deficit, which develops over
minutes and usually persist for 1-6 hours. These episodes
then clear spontaneously. Hypokinesia, tremor, and rigidity
may be exacerbated over the period of deterioration. Hypo-
tonia is common and has also lbeen reported. These
oscillations in performance are commonest in patients
who have been on levodopa for over a year. They usually
occur in the afternoon, and they may be repeated in cycles.
Their mechanism is not understood.....

clinical symptoms. Administration of levodopa over a year
has been found to result in a rise of growth hormone in the
plasma, an increase in serum cholesterol, a decrease in glu-
cose tolerance, and a delayed but exaggerated insulin re-
sponse.3 It appears that these changes take some time to
become established, as similar investigations after shorter
periods of levodopa therapy have failed to show the same
abnormalities.4

I could not have written a better description of what I was experiencing. And I do think it is a problem with levodopa and insulin.

Thanks for this. Your knowledge is amazing! Lin2

What if a person has all the same bouts and symptoms you describe, Reverett. Except, their blood pressure is low, as in sometimes 89/57 or 95/63 with a pulse rate anywhere from 65 to 90. Peripheral neuropathy is dominate, shortness of breath, all this when I'm "off".
Seems like BP has no involvement as a precurser. I think BP might be a result of what is going on in us. (I know, "duh")

I wake with all of those same symptoms. Then, meds work great, and after lunch, bad "off" time lasting hours.

I'm following with interest, too.

thanks so much!
Tonya