Myths About Parkinson's

 

A Journey Into Parkinson's with Nancy Mellon

Coordinated by Corrine Bayraktaroglu

Should I or shouldn't I take more medicine to try to curb my sleep problems?  Dr. Malone, my dearly wanted movement specialist, suggested I take a longer acting version at bedtime to help with sleep issues. Months ago, she answered my questions: Will taking more cause hallucinations? Dr. Malone: “Not very likely at this dose and stage of the disease and if it happens we can cut back to stop it.” Does taking more cause me to run out faster the ability of the carbidopa/levodopa to help me? “No.”

But did I really believe her?  I still didn't want to take more meds. 

Lee sent me an article from the Mayo Clinic.  It was called “Common Myths and Misconceptions That Sidetrack Parkinson Disease Treatment, to the Detriment of Patients.”  Which is quite a mouthful for a title.  It's a very good article and answers some of these questions too.

 myths about levodopa still communicated to patients:

“it stops working after a few years,”

“it should be saved for later,”

“the dose should be restricted,”

 “levodopa dyskinesia is worse than PD.”

Other problematic myths include:

“levodopa causes nausea and should be taken with food,”

“levodopa disrupts sleep,”

 “50% of people with PD experience hallucinations.”

 The article refutes all the myths.  In interesting ways that made sense to me.

So...... why do I still hesitate to take more medicine?

I have very deep in me, a distrust for medicine and scientific solutions and I think even Drs.

It feels that once you go that way- you go down the rabbit hole and can never can come back.

I have had that theory disproved a couple of times in my life.  I definitely felt better when I started taking the carbidopa/levodopa.  And I now feel after my heart attack and 5 stents that I should have started statins 20 years ago. My cholesterol has always been very high.  Instead, I listened to my great Docs (no sarcasm intended) who I wanted because they used alternative therapies, besides regular ones.  One said, after my more expensive, not insurance covered- cholesterol test, that broke it down into more categories, “Great News, you have the good kind of cholesterol that is fluffy not sticky.”

Another said, after she ordered an (I think it was) MRI, that I didn't have any buildup of cholesterol.

And I was very conscious of my diet-no butter for me!

 So how did I get to 5 stents later?

Maybe it's the later part. After all my dad had his heart attack at age 43 and his dad at 46.

I was 67 and Thank you God, didn't die from it. So maybe “fluffy” worked for a while.

 Not wanting to take more drugs- It might be a wanting to feel in control thing?  I have never trusted taking meds especially ones that I have never taken before. I read all the warnings in the literature that comes with them and angst over it.  I know-not a good idea, at least not for me. I have felt that once I swallow that tiny pill it has all the power. I can't go back. Makes me shiver just thinking about it.

Still pondering:

Nancy and the Snark

 

Here are 2 of the myths discussed in the article:

Myth (Television): Around 50% of People With PD Will Experience Hallucinations. When hallucinations

occur among my patients, most resolve with elimination of PD medications other than carbidopa/levodopa. These medications include dopamine agonists, MAO-B inhibitors, and amantadine, as well as centrally acting anticholinergics (most often used for hyperactive bladder). Maintenance of carbidopa/levodopa monotherapy typically is tolerated in patients susceptible to hallucinations. Other contributors to hallucinations include opioids and muscle relaxants.

Myth: Carbidopa/Levodopa Disrupts Sleep:  Insomnia is a common disorder. When itnewly surfaces in the context of PD, it often relates to an inability to become comfortable in bed because of the parkinsonism per se (e.g., akathisia, inability to turn over easily,stiffness). Treating the parkinsonism often improves sleep. Among patients with newly diagnosed PD, the daytime doses of carbidopa/

levodopa typically results in long duration pharmacodynamics,38 which carry over to the nighttime. With longer-standing PD and development of “short-duration” levodopa responses,38 a full carbidopa/levodopa dose an hour before bedtime may allow sleep. If recurrence of parkinsonism occurs during the night with awakening, another full carbidopa/levodopa dose should allow a return to sleep (30-60 minutes later, once it has taken effect). “Full dose” implies taking the same dose found to produce the best daytime response. Of note, insomnia is common among people in general; other causes may be present, but this is a very treatable cause.

 Footnotes from Corrine

To take or not to take , well yes that is a question.

It’s a question I struggle with, wanting to err on the side of caution BUT

If I stop my hormone blocker will the cancer come back BUT

If I keep taking it will the side effects add up 

BUT

BUT

BUT

Dam that Rabbit Hole