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Chics Dad

New member suffering with Apathy

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I am a new member to the forum, diagnosed 2 years ago, have been suffering with bouts of what I think is apathy. The 200 mg of prolopa I take three times a day manage the tremors. I just don't understand why I fluctuate between my normal self of having tonnes of energy ready to take on the world, to someone who goes to bed at 11 pm lays in bed, doesn't want to get up with no ambition to do anything at all. I stays in bed until 2 to 4 pm four days a week and don't get out of bed at all a day or two a week. Please let me know if this is this typical with Parkinson's.

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The more you read and research the more you will learn that Apathy in Parkinson's is the most widely miss understood and un-reasearch in PD patients. 

 

The best thing I have found is to make sure I stay consistent in my daily activities and force my self to get up an get moving. Once I finally get up and move and start to do something then it just get easier to keep moving. I do need one day a week to just sit around and do very little. 

 

You will see that a lot of people on here have similar problems getting motivated. 

 

Welcome to the forum and keep posting.

 

Blessings

Adam

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Welcome, Chic's Dad.

 

You might be describing apathy. You might also be describing depression. Depression is a non-motor symptom in  more than 50% of PD cases. Changes in sleep patterns are a common symptom of depression. It would be worth discussing with your neurologist or MDS.

 

Have you noticed whether your fluctuations in energy level are related to when you have just taken your medication or when it is nearly time for the next dose? These fluctuations in energy are normal in PD patients. Stress also can diminish the effectiveness of your meds and make all PD symptoms worse.

 

Dianne

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Adam thanks for your experience. I will try and push myself.

 

Diane thanks for your expertise but it doesn't seem to coincide with when I have or about to take meds. Stress level hasn't changed so I don't think it's stress.

 

I am trying to get to another neurologist, one that has a lot of Parkinson's experience.

 

Cheers

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Did you have this problem before you were diagnosed with PD?  Did you have this apathy before you started taking PD medication?  Apathy and depression can be side effects of drugs containing levodopa. 

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Stay grateful , things could be a lot worse. Your attitude will be your choice and your attitude will determine weather you attract or deflect other people. Let your light shine when ever you get the chance. Having Parkinson's makes it difficult to make new friends but being grateful is best way to make the world around you a brighter place. I try to shine my light on love & peace. It is not easy but this brings me a true joy with a feeling purpose.   

Take some deep breaths and have a glass of water . Your brain needs oxygen and the water will help it get there. 

Greg

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"Apathy" is real and is distinctly different from depression. Type A personalities (which I was) cannot comprehend.

 

A neuro prescribed Amantadine which provided energy, was compatible with l dopa....but eventually caused mania.

 

I found a competent ....repeat...competent .... psychiatrist who understands PD. He worked with minimal amounts of prescriptions and followed mood fluctuation. It became apparent my moods cycled...which leads to a bi polar effect...which is prevalent in my family history. With a new perspective, I recognize I had mood swings long before I was dx'd with PD or took l dopa.

 

I have reached a "sweet spot" with my meds. I take 75 mg (which is a teeny dose) of Lamictal once a day. I have twice the energy I had when first diagnosed with PD, but am balanced (tho some forum family members would disagree... )...and I sleep well at night. I have a degree of apathy in that I am limited to amount of energy I have...but I think that is purely a PD thing.

 

Things I have learned:

 

Of course, everyone is different.....we are snowflake people.

 

It is debatable if I had apathy or deep depression...linguistics matter less than finding successful outcomes.

 

Psychiatrists .... Good psychiatrists do not counsel behavior difficulties...they manage brain chemistry. It is a much more developed and complex profession than in the past. HOWEVER, it is critical one finds a psychiatrist who has experience, wisdom, and does not personally meet with pharmaceutical reps.(cynical humor). In my case, Lamictal has been around for a long time...has developed a history...adverse reactions are known. Research doctors. You will discover from the forum, that PWP have had negative ...and sometimes life changing consequences..... from meds that are poorly prescribed for bran chemistry. I made a pack with my psych we would work together...small titrations....and patience. No shotgun approach...and it worked for me.

 

Life style changes are necessary to remove stress. Well trained, experienced psychologists can help modify the stress all PWP experience.

 

It is important (to me, at least) to take meds consistently at the same time of day. Sadly, if I miss a dose of Lamictal , I feel different immediately, yep, I am addicted now to l dopa AND lamictal...finally accepting it is a necessary choice for quality of life.

 

It is well worth your time to invest in seeking an answer to apathy. Regardless of your resolve, faith, or discipline...if you suffer from true apathy, you are not likely to beat it without help to balance brain chemistry. I agree exercise and good health habits greatly impact brain chemistry....unless you cannot get out of bed.

 

Good luck to you....trust your instincts...and keep swimming. (Uhhhh, that is just an expression to mean do whatever it takes to keep your head out of the water and survive). ???? But swimming might help...

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  Apathy and depression can be side effects of drugs containing levodopa. 

 

Please cite medical references. 

 

I've dealt with both long before I had any Dx of PD, let alone medication for PD.

 

Staying in bed all day is typical of depression.   I'm keeping it under control, and the best part since starting on Sinemet is it really helped my depression.   

 

Apathy -- to me it is just getting things done. I know the side door needs paint, interior door needs to be replaced, and a ton of projects around the house. It is just forcing myself to start on those things.   I hadn't used my CNC machine in over a year. Our Rock Steady Boxing uses a "peg board" as part of the testing process to figure out what class you are in. Cool board, but for $150 for a piece of plastic with little holes in it, way to expensive. Told our instructor I can make one, well I did.... after three months! Just took a while for various reasons, all easily solved. Just  initiating a project (feeling like I an wading through molasses) seems to take a while.

 

Got the first two boards cut out, and have idea's for another couple of games to help dexterity.  Oh 50 holes in the board, 1/8" x 1" pins. Pick a pin up, place in hole. Sounds simple, but give yourself 30 seconds.  When fully "on" I can do about 20 pins, when off I can get two or three pegs placed. Helps with dexterity and fine movement.   Worst one I hate.... buttons, so practice makes perfect. That I I just wear polo shirt with a collar. :)

 

Anyway it felt great to get the boards finally made. Nothing to it, but normally to set up the CNC router is a 30 minute job. Took three hours as I haven't done it in so long, but boy felt great to get something accomplished.  Oh the boards were $15 cutting boards, pins were $10 for 100.   So $20 and a little of time. 

 

Lots of great advice already given, but both Depression and Apathy are real for many of us.  In the office I give myself blocks of time "30 minutes task A, 90 minutes task B, 60 minutes task C".  So if I just stumped, and do not get moving, once time is up just go to next item.  I may have four things, our of six, accomplished for the day... but that is progress. Also helps to realize "90 minutes for this task" so if I don't spend all day frustrated on it.

Edited by TexasTom
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Texas Tom

 

I am soooo glad you posted....it validated my symptoms. Depression can keep you in bed all day...but apathy puts a wall up between you and an activity...even a fun activty. Unless you have experienced it, you can't believe it. I have a great exercise pool...feel wonderful when I use it...less than ten steps from my house...auggggh! I don't use it as much as I should then I start calling myself lazy, slothful...etc...which leads to depression ....I am not complaining...just frustrated.

 

 

Thanks a lot, Tom..great advice....and glad you have recovered from your surgery ...

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Apathy and depression can be side effects of drugs containing levodopa. 

I would have to agree with Tom. As an editor told me years ago...... Please Patriot, cite your sources.

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The following list was cut and pasted from Patriots link. Only under incidences not known do we see Anxiety listed and no where on the list is depression. Feeling sad or empty is listed but not depression. And no where do we see percentages of occurrence.

 

 

 

For the Consumer

 

Applies to carbidopa / levodopa: oral capsule extended release, oral tablet, oral tablet disintegrating, oral tablet extended release

Other dosage forms:
 

As well as its needed effects, carbidopa / levodopa may cause unwanted side effects that require medical attention.

If any of the following side effects occur while taking carbidopa / levodopa, check with your doctor immediately:

More common •Twitching, twisting, uncontrolled repetitive movements of the tongue, lips, face, arms, or legs

Less common

•Bladder pain
•bloody or cloudy urine
•chest pain
•confusion
•difficult, burning, or painful urination
•discouragement
•feeling sad or empty
•frequent urge to urinate
•inability to move the eyes
•increased blinking or spasms of the eyelid
•irritability
•lack of appetite
•loss of interest or pleasure
•lower back or side pain
•seeing, hearing, or feeling things that are not there
•sticking out of tongue
•tiredness
•trouble concentrating
•trouble in breathing, speaking, or swallowing
•trouble sleeping
•uncontrolled twisting movements of the neck, trunk, arms, or legs
•unusual facial expressions

Incidence not known

•Anxiety
•black, tarry stools
•bluish color
•blurred vision
•changes in skin color
•chest discomfort
•chills
•convulsions
•cough or hoarseness
•dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
•dry mouth
•false beliefs that cannot be changed by facts
•fast, irregular, pounding, or racing heartbeat or pulse
•feelings about hurting oneself or others
•fever with or without chills
•general feeling of tiredness or weakness
•high fever
•hyperventilation
•increased in sexual ability, desire, drive, or performance
•increased interest in sexual intercourse
•increased sweating
•large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
•loss of bladder control
•lower back or side pain
•nausea
•pain
•pain or discomfort in the arms, jaw, back, or neck
•restlessness
•seeing, hearing, or feeling things that are not there
•severe muscle stiffness
•shaking
•sore throat
•sores, ulcers, or white spots on the lips or in the mouth
•swelling of the foot or leg
•swollen glands
•tenderness
•tiredness
•unusual bleeding or bruising
•unusual tiredness or weakness
•unusually pale skin
•vomiting

 

Some carbidopa / levodopa side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:

Less common

•Acid or sour stomach
•back or shoulder pain
•belching
•body aches or pain
•burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
•diarrhea
•difficulty having a bowel movement (stool)
•ear congestion
•headache
•heartburn
•indigestion
•loss of voice
•muscle cramps
•nasal congestion
•runny nose
•sneezing
•stomach discomfort, upset, or pain
•unusual dreams
•weight loss

Incidence not known

•Abdominal or stomach distress
•bad, unusual, or unpleasant (after) taste
•belching
•change in taste
•dark sweat
•double vision
•enlarged pupils
•feeling of warmth
•hair loss or thinning of the hair
•lack or loss of strength
•redness of the face, neck, arms, and occasionally, upper chest
•seeing double
•skin rash, hives or welts, itching

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You're kidding, right Adam? 

 

Here, I'll make it even easier:

 

For Healthcare Professionals

Applies to carbidopa / levodopa: enteral suspension, oral capsule extended release, oral tablet, oral tablet disintegrating, oral tablet extended release

 

General

The most common adverse reactions reported include nausea, dizziness, headache, insomnia, abnormal dreams, dry mouth, dyskinesia, anxiety, constipation, vomiting, and orthostatic hypotension.[Ref]

 

 

Psychiatric

Very common (10% or more): Anxiety, insomnia, depression (up to 11%)

Edited by PatriotM
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SNL did a skit once on the side effects of medications.  Naturally the list was super long and it covered EVERYTHING humanly possible.    Can you imagine if everyone have to suffer through everything on there?   I see this more like a buyer's beware thing.   If you have to take something do it and hope for the best.

 

One time my aunt had to take 3 kinds of  antibiotics at the same time for 2 weeks and she sat on it for a month going over each side effect.   In the end she took them and nothing happened to her.  

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I agree....try it, if it don't fit you then switch...

 

You're your own advocate......you know what's best for YOU...

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My mom's pharmacist told me that the way they come up with all these side effect warnings is from the clinical trials.  If a certain # of people check off the same thing then it gets listed. But yes you're right Patriot.  That is a LOT!

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Actually I found that the we site tended to contradict it's self....

 

On the consumer area it lists:

Incidence not known

•Anxiety

 

but further down under the "professional" area it claims the following:

Psychiatric

Very common (10% or more): Anxiety

 

So, the question is?? Which claim is true?? They can not have it both ways.

That issue alone in my mind calls the accuracy of the site into question. 

Sorry Patriot, but the validity and accuracy of your citation is highly questionable....

 

For the time being, I've posted the question to both Mark (our pharmacist), and Dr. Okun, for clarification.....

Edited by AB-Normal

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Drugs.com is a reputable website no?  It seems there are variances in what is listed in the consumer side vs. the professional or else they wouldn't need to separate out the information.  Doctors probably are given more info than the regular Joe who reads it.  All this is just a guild line to what can happen but not will happen and to cover the drug maker's behind.  When something is listed as unknown it doesn't mean won't happen so no one can go back to them and ask why you didn't list it.  Until you try a particular drug you will never know how it will affect you. 

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Actually I found that the we site tended to contradict it's self....

 

On the consumer area it lists:

Incidence not known

•Anxiety

 

but further down under the "professional" area it claims the following:

Psychiatric

Very common (10% or more): Anxiety

 

So, the question is?? Which claim is true?? They can not have it both ways.

That issue alone in my mind calls the accuracy of the site into question. 

Sorry Patriot, but the validity and accuracy of your citation is highly questionable....

 

For the time being, I've posted the question to both Mark (our pharmacist), and Dr. Okun, for clarification.....

 

First of all, the question in this thread was apathy and depression, not anxiety.  Adam mistakenly typed anxiety in his post.

 

Then, Adam said that depression was not included anywhere in the link I provided, which was simply not true and I posted the exact quote from the link.

 

Now, it's claimed that the information on Drugs.com is not accurate and several members on this forum seem incapable of researching anything themselves.  Maybe poor reading comprehension is another side effect of taking Sinemet.

 

Anyway, here is a quote from Merck's Sinemet website listing depression as a side effect: 

All patients should be observed carefully for the development of depression with concomitant suicidal tendencies.

 

I'm absolutely sure that there are dozens of other sites that list depression as a side effect of Sinemet.  If you don't like the information from Drugs.com and don't believe the manufacturer, then maybe you could find your own information.

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