Apathy - the curse of Parkinson's

I started writing this blog as a kind of therapy for me to deal with the symptoms of Parkinson's Disease.  What I have found it most useful for, however, is a driver to get me moving and doing something... anything... other than sitting like a veg in front of the TV.
I used to be driven.  I used to have passion.  I would work on a project from sun-up till sundown and even later sometimes. It was almost like an obsession.  I couldn't wait to get started then drove myself to get as much of it done at one time as I could.
Then Parkinson's started to work its magic.  I've lost that edge, that drive and the will to accomplish, well.... anything.

I find myself frequently unmotivated. Just willing to do the bare minimum to get through the day. Projects I used to love to do, like working on my 100-year-old house, do nothing to excite me like they used to. I have to will myself off the couch just to get started and easily could be convinced to sit idle and watch reruns on TV instead.  Surprisingly, when I do manage to get going and accomplish something, I always feel better. You would think that would motivate me the next time, but sadly no.
At first I thought, along with the myriad of other symptoms of Parkinson's, I was falling into depression. Some studies suggest that 60% of people with Parkinson's experience mild to moderate depressive symptoms. I didn't feel depressed so my neurologist clarified this with a simple example.  She described meeting with a couple where the wife was concerned that the husband was depressed.  The wife stated the husband was unmotivated, didn't enjoy things anymore and basically wanted to sit on the couch all day.  The neurologist turned to the husband and asked him how he felt.  "I feel good" was the response.  Her opinion: This would most likely be apathy, not depression.  While not a clinical diagnosis, it certainly does help clarify the picture.

The best description of apathy and treatment options I've found is here.

Unfortunately, while there are many options available to treat depression, they are still trying to find the right combination that will treat apathy. And, as with most medications, you have to be careful of the potential side effects which rule out most of them for me.
While doing some research, I did stumble across yet another depressive symptom related to Parkinson's which I found interesting.  Well, interesting to me because it explains what I'm feeling (or not) better than anything else I have ever found. 

Anhedonia -  the inability to experience pleasure from activities usually found enjoyable

I have found over the years that I've been more and more of a 'what's next' kind of guy.   When something good happens to me, like winning an award or finishing a big project all I can think of "okay, that's over, what's next?"  It isn't that I'm unhappy that I accomplished something, there's just no sense of joy.  The strange part is this seems to be a bigger problem for those around me than it is to me. I guess it should bother me more, but it doesn't.  Hmm, indifference.  Strike another one up for apathy.
I've said it several times now, this is a weird disease.  At least it keeps me busy looking up new problems.

Some additional links on Apathy

Apathy vs depression here
Some non-medication tips for dealing with apathy here
Apathy and cognitive function here
Interesting study on apathy and other neuropsychiatric symptoms here
A little on anhedonia here

Is there anything good about Parkinson's? - Chocolate!

Have you ever had a craving?  I don't mean, "gee I could go for a bowl of ice cream" craving.  I mean the 10 pm it's snowing outside and I'm headed to the store because I need a piece of chocolate kind of craving.
It's a strange feeling that overtakes you and it all goes away with a little chocolate.  I don't want the whole bar, just enough to satisfy the craving. I'm not sure if any of my Parkie friends have experienced this feeling with this or any other food, but I find it strange that the craving stops with with just a square or two and I'm not driven to eat the whole bar.

How did the Mayans or whoever actually invented chocolate think ' if I just do these 12 steps these inedible bitter beans become something delicious!"  This is what I think about staring at the ceiling at 2 am, but I digress.

Chocolate contains many compounds, (nearly 380!!) that stimulate dopamine and other 'feel good' chemicals or prevent their reabsorption. Here is a short list of some of them and their effects:

• Tryptophan and serotonin: They create feelings of relaxation and well-being.
• Caffeine: creates temporary alertness.
• Xanthines: like caffeine, increases wakefulness.
• Theobromine: A stimulant and vasodilator increases blood flow.
• Phenylethylamine: stimulates the brain to release dopamine,
• Anandamide: This neurotransmitter activates pleasure receptors in the brain.
• Flavonols: Found also in foods like red wine, blueberries and green tea, these compounds boost blood flow to key areas of the brain for two to three hours after being metabolized, creating effects similar to those of a mild analgesic (painkiller) like aspirin.  reference here

 Okay, I get the attraction, but other foods produce dopamine and you don't see me driving to the store in the cold night air to pick up fava beans!  Plus, the amount of these chemicals in chocolate is incredibly low.  One study suggested it would take 25 lbs of chocolate to get that 'high' feeling.  So how could a couple of small pieces satisfy a craving?  Reading what is out there all I can suggest is the brain senses an imbalance, triggers the craving and once the craving is satisfied turns the craving back off.  I've said it before, this disease is weird.  At least, though, it was kind enough to make me crave chocolate and not something gross like... raisins...ick, I get a shiver just thinking about it.

Oh, my chocolate of choice - Hershey's Symphony bar - best chocolate you can get for under $2.  I am open to suggestions, though.

Interestingly enough, there's about the same number of studies telling you how chocolate leads to Parkinson's as there are stating how chocolate helps Parkinson's patients.  I broke some down below and will let you decide.


Bad Chocolate
Over-consumption leads to Parkinson's here
Compound inside Chocolate causes Parkinson's here
Chocolate doesn't help Parkinson's sufferers here

Good Chocolate
Study to find if chocolate reduces symptoms here and here
Benefits of Cacao here  and here

Avoid chocolate? here


Up next:  Apathy......maybe

Sleep... I took you for granted all these years

It is getting late and I am falling asleep in the recliner.  Time to give up and go to bed.
I lie down and like magic I am... wide awake.  Maybe if I just toss and turn for a while I'll tire myself out.  60 minutes, 90 minutes.  Nope, not happening...get back up.
Wide awake now,  let's see.... surf internet, check mail, write a little in next week's blog, bored.... I wonder what's on TV?  Infomercials. A combination banana slicer, cheese-grater and corkscrew.  I might have to get me one of those.  OOH, buy 1 now get 2 free!  I see why these shows are on in the middle of the night.  That's when we are at our weakest.
Finally feeling sleepy enough to go back to bed.  Dog took my spot, figures. 
Sleep.  Weird dream, wow that was so REAL!  Eyes snap open.  Feels like it should be morning by now.  Nope, 3 am.  Maybe if I could just get comfortable. Toss and turn again, ugh, now 4 am.
I wonder if I should just get up.
Hmmm, now it's almost 5 am, I must have dozed off briefly.
5:30 am alarm goes off.  I'm dragging.  It feels like I could sleep for hours.  At last, the sleepy feeling I've been waiting for has come.  It's not fair that it arrives just when I have to get up.

To sleep, perchance to dream; ay, there's the rub

I know Shakespeare's Hamlet was talking about suicide in this quote, but it has a different meaning to Parkies.  You can't get to sleep and when you finally do you can't stay asleep.  But, when you do happen to drift off, your sleep is either filled with vivid dreams or you act out one of them and punch your water bottle off the nightstand. Ay, there's the rub!
I can't remember the last time I had a good nights rest. For a while now it has been very repeatable:

• can't get to sleep will last a few days to a week
• can get to sleep, but can't stay asleep takes over for about another week
• then can't get to sleep and can't stay asleep hits which basically means you are up all night

then the cycle starts again

Nothing has worked.  Melatonin, sleep aids like zzzQuil™, sleepy time tea, warm milk, a jug of wine, nothing will break the cycle.  I am able to get by at least a little more comfortable by taking a Sinemet CR (controlled release) right before bedtime.  This helps to stave off the muscle soreness that would wake me up or prevent me from getting into a deeper sleep. However I am still, at best, getting 4-5 hours sleep a night and usually that's not all in a row.
I can't offer a lot of advice on this subject because I haven't figured it out myself yet.  I have gone through the no alcohol, no caffeine, no tv routines to try and help me get to sleep. Plus, tried no computer screens when I am up in the middle of the night to keep from 'waking my brain up'.  Nothing helps.  When I am up...I'm up.  At those moments, my body has no intention of resting so I figure I might as well be productive and get some work done.  I look forward to retirement someday where, hopefully, at two in the afternoon,  if I want a nap I can take one!

Here are some links to keep my Parkie friends busy in the middle of the night:

What lack of sleep does here  
Why you need your sleep here
Effects of not getting enough sleep infographic here

An article from the Huffington Post on continued poor sleep here
Interesting take from Business Insider here

Sleep tips from Parkinson's Canada here

Acting out while sleeping here
REM sleep disorder and Parkinson's here

Why can't a Parkie sleep? here

Can't sleep? You are not alone here

Data from a sleep study here


Next up: Is there anything good about Parkinson's - Chocolate!

Starting Parkinson's medications... or not?

I read a lot, correction, I research a lot.  Genetically passed down from my father (thanks Dad!)  I love digging out information on practically anything for whatever project I am working on.   Research after my initial diagnosis told me to delay taking medication for as long as possible to prevent 'getting used to'  it.  The consensus of opinion was you would build up a tolerance and the meds would become less and less effective. Sounded logical so I was determined to delay as long as I could.  As it turns out, I was convinced later that this was antiquated thinking.

 In my second year after diagnosis, the dystonia in my hand was getting worse.  Most times you would find my arm held tight up against my body with some of my fingers straining to lay flat against my palm.  I needed to stretch it frequently to keep the muscles from getting sore.  If I massaged my hand first I could use it, albeit slowly.  I arrived at my normally scheduled neurologist appointment with questions at the ready as to what we could do about this.  My other symptoms were minor in comparison: slight drag of left foot, trouble finding the right word at times, a little restless leg, the ever present resting tremor and, of course, varied to no sleep.   After looking at my symptoms, Dr. Richard (my Neuro) asked what I thought about going on medication.  I told her about my concerns of starting too early for fear of building up a tolerance.  She patiently pointed out that the current belief was you didn't build up a tolerance, your symptoms were simply getting worse which required more medicine.  I took that to mean that by waiting, your symptoms will progress to the point you will need higher doses of medication to control them later anyways.  I figured you would end up starting at the same dosage of medication as if starting earlier and making adjustments along the way.  Why suffer for two years to end up right where you would have anyways?  With my hand basically useless I was at the point I needed to try something.  
So what were my options?  I had been on an SSRI (selective serotonin re-uptake inhibitor) in the past for other things and did not respond well.  Let's just say some of these drugs can cause significant impulse control issues and I was afraid the wine store cashiers were getting to know me by name.  That eliminated things like Dopamine Agonists and MAO-inhibitors basically leaving me to start out with Sinemet and Amantadine. 
Looking at my contorted hand and responding to her question about starting the medication I said, "I'm in."  Everyone has to make up their own mind, but in the two years since starting meds I know I made the right decision. Although my symptoms have progressed and my dosages needed adjustments, I feel much better "on" than "off."  This was never more evident than when my Neuro asked me to be evaluated off meds. I was shocked how much they were covering up. My symptoms have definitely progressed!
I did some more research (big surprise) on building up a tolerance to Carbidopa/Levodopa (Sinemet).  It's amazing how many sites still claim your body gets used to the drug and will need more to remain effective.  Anything written more recently though says the same thing my Neurologist said.  For example from another PD blog:


Both my doctor in Japan and Dr. Okun from here on the ask-the-doctor section of the forum seem to agree with the notions that 1) Sinemet will not stop working but your disease may progress to the point where Sinemet can no longer control the symptoms as well. This means you may experience increased off time, unpredictable off time, dyskinesia, among other things. There are ways to manage these issues, such as taking smaller doses more ofter or adding different drugs or discontinuing other drugs. 2) it is not beneficial to delay starting Sinemet if your symptoms are such that they prevent you from doing things you want/need to do or limit your mobility. Limited mobility is far more dangerous in the long term because of loss of muscle tone and cardiovascular fitness, which can lead to other very serious complications like heart disease or blood clots. Lost muscle is hard to recover and will limit mobility as well. 3) there is no reason to believe Sinemet is useful for only 3-5 years. You will find many who have taken it for 10 or even 20 years. Remember it's the disease that progresses, not the drug losing effectiveness. For this reason, it's important to have good medical advice on how to optimize your medication regime so your function is as good as it can possibly be for as long as it can possibly be. One thing is that if you are undermedicated, it's all too easy to slip into a downward spiral of inactivity leading to stiffness and weakness leading to further inactivity.... I know. I've been there before diagnosis. 4) young patients tend to have dramatic response to Sinemet and while you may end up needing to dose more often to control off time, you may be able to maintain the same dose over many years.
To me, it sounds like your doctor is following some quite old guidelines, as they used to say that Sinemet would lose effectiveness. But, that has been shown to be false. Perhaps talk more with your doctor, do a bit of reading over in the ask the doctor forum and elsewhere, and even seek out a doctor who specializes in movement disorders and/or PD.

I could not have said it better myself!

There are some new additions to the medication line-up: Rytary and Duopa.  Both are described in the Medscape link below. Plus, I am seriously considering the botulism toxin for work on the dystonia.  I'll write about that in an upcoming blog but there is an article below if you can't wait.

Medscape with the most complete list of available Parkinson's med, descriptions, etc here

Very interesting study on what can cause the dyskinesia and why taking L-Dopa may trigger it here

Michael J Fox foundation medication page here
PDF with good list and explanation of meds available here
APDA on botulism toxin here
Parkinson's Canada information on taking medications here

Khan academy on medications here - make sure you watch the other Kahn videos too. 

Interesting study on use of a dry powder inhaler to deliver meds into the body here

The basics of wearing-off here
Some drug side effects here
Article on impulse control here

Good guide to Sinemet here

Up next: "To sleep, perchance to dream, ay there's the rub"