Parkinson’s ‘Illegitimate’ Children – Part II

Well, here we go with the second part of this series! Bet you are wondering what less-talked about symptoms I’ll be discussing today, huh? Drum roll, please… In today’s post we are going to be talking about…. Mood!

Mood is a somewhat funny sounding word, isn’t it? Makes me think of the Moody Blues (if you don’t know who that is, you’re most likely younger than I am!); or something involving a cow (Moo!) But no, mood in this case means how we are feeling mentally and how Parkinson’s can affect us in that area. Things such as depression, anxiety, and apathy.

“Whoa, Tom, those are getting a little personal, are they not?” Maybe, but again, these are things that we tend to keep in the closet, so to say, and not talked about much; yet they can affect almost ALL of us Parkies at one time or another during the course of our lives with this disease… so we – and our care partners – should be aware of these and know that there are ways to cope with these issues!

But before I go further, I again have to remind you:

Disclaimer: What I am discussing here is either my own experiences or what I have researched. I am not a physician, and what I am presenting is not meant to diagnose or treat any illness. See your own physician or neurologist before making any medical decisions regarding this topic!

So with that said, here is what –I– consider the top 3 mood issues with Parkinson’s:

Depression

It turns out that depression is very common with us Parkies. In fact, it’s reported to occur in about 35% of all Parkinson’s patients. I say reported because it is thought that even this percentage is greatly underestimating the amount of patients experiencing depression but not reporting it!

Now, the depression we are talking about with PD is more than just feeling ‘blue‘ every once in awhile – everyone has bad days – even yours truly! No, this is when you really feel sad and it lasts longer than a few days – i.e. chronic. Some symptoms of depression can be: Sadness; pessimism; interest in activities; or constant fatigue. One of the big problems with depression in Parkinson’s is that both have so many similar looking symptoms that it’s sometimes hard to tell the difference between them! No wonder so many people may experience depression but not report it!

The scientists and researchers out there are not sure exactly why depression occurs so often with this disease – Is it part of the disease process itself? A side effect? Or something else? They are not completely sure, but we do know that Parkinson’s itself starts with the loss of our dopamine-producing brain cells, and this loss can affect many other portions of our neurotransmitter systems such as serotonin – which is the brain chemical that helps regulate our mood. And if our serotonin system is affected, then it’s no wonder that we Parkies can experience depression!

Now I myself have not really experienced this so far in my journey with PD – normally I am a pretty happy person! (or more likely my family and friends would call me a nut!) In fact, I can think of only about two times in my life (which I won’t go into detail here) where I would consider myself ‘depressed‘ – and those only lasted a short while; then I returned back to my normal jovial self. But I have experienced more of what I would call ‘melancholy‘ days since my diagnosis. But in my case, this may also have to do with my DBS surgery – turns out that we folks who have had DBS -tend- to have more depression than those without DBS! Of course, I was told this right at the beginning before I had the surgery, so I and my care partner knew about it and therefore we can keep my eye on it so that it doesn’t get out-of-control.

But regardless of the how and why, depression can really be debilitating! The good news is that it appears that Parkinson’s related depression is usually of a milder form than that seen in non-PD patients. And it is treatable! None of us should have to suffer with this type of disorder – there are drugs (SSRI’s, SNRI’s, etc.) that can help ease depression, along with things like counseling and Cognitive Behavioral Training (CBT). And there are even simple lifestyle changes can help with depression – like EXERCISE; getting plenty of sleep; eating good balanced meals – all these things help boost those wonderful brain neurotransmitters!

And never feel embarrassed if you get depressed – bring it up with your neurologist or physician; as I have said before, they are there to help you!

Anxiety

Well, if we talked about depression, we have to talk about his little brother – Anxiety; which of course is the opposite of depression. I am very familiar with this disorder; as I have mentioned in previous posts, my mom is a worrier and I take after her in this regard.

Generalized Anxiety Disorders (or GAD) include such things as worrying, discomfort with social interactions, fear or panic attacks, constant nervousness, and the like. It is estimated that up to 60% of PD patients experience some form of anxiety disorder – which can also be associated with depression. (Ugh, isn’t that a terrible combination to have!) In fact, it is believed that anxiety can pre-date the start of a Parkie’s motor symptoms! Even more unnerving, anxiety appears to be more severe in PD patients than in non-PD folks, so it’s something we just can’t ignore!

Now we all worry at one time or another – it’s human nature! But the anxiety that may come with PD is something of a different type. Fear and self-doubt, along with worrying about things all the time, can rob us of the joy of living, and can be seriously detrimental. Why? Because it affects the PD patient long term by hindering things that we can do to help us manage this disease, such as exercising, staying socially active, and being proactive in our care. Luckily, just like depression, this can be treated with medications, lifestyle changes, counseling, and even support groups! Plus, there is something uplifting to know that you are not alone in this journey! So if you are a Parkie, or a care partner, be on the lookout for depression and anxiety, and make sure that if you do see this developing that you bring it up with your neurologist! Don’t keep it in the closet!

Apathy

Now this is one of those terms I didn’t know much about – I had heard it before but never really thought much about it. But once I did some research, I realized that this is definitely something we need to be aware of because it happens more often than we think! In fact, it can appear in up to 60% of us with Parkinson’s!

And it wouldn’t be a proper ‘Deep Brain Thoughts‘ post without a definition or two <grin>, so here is what apathy means

“Lack of interest, enthusiasm or concern; Absence or suppression of passion, emotion, or excitement.” (Dictionary.com)

“Apathy is a state of indifference, or the suppression of emotions such as concern, excitement, motivation, or passion.“(Wikipedia)

Well, well – so now you know! I’ve often used the following, rather corny, illustration of apathy: I am walking down the road when my right arm falls off. Normally, I’d freak out and start screaming “Help! My arm, my arm!” But if I were apathetic, I might casually look down at my arm laying there, and think, “Hmm… my arm fell off – guess I had better go get that fixed“; then pick it up and continue on down the road like nothing happened!

Corny, yes… but I think that a decent description of how apathy works. You simply become disinterested in things that you used to find exciting or fun – maybe it’s a hobby you’ve always enjoyed, or going to your favorite sports game (Go BLUE!); or it might be as simple as not having any emotional concern about anything anymore – no laughing, crying, being angry, being happy, etc. It’s kinda like feeling ‘Meh…so what, who cares?‘ about everything! Like depression and anxiety, it is believed this is caused by the lack of the neurotransmitter dopamine.

Apathy can be very dangerous, because it robs us of our will to live and to keep fighting this monster called Parkinson’s. Apathy can make you not care anymore, not exercise, not take your meds properly or at the correct time – all those things that keep us going forward with our lives.

Unfortunately, it turns out that apathy can occur after DBS surgery. Why? The researchers are not exactly sure – however, it is believed that it may be due to the reduction in dopamine meds one takes after having DBS. That was why I was screened before DBS surgery and told what to look out for after surgery. And that is why my lovely wife and care partner always keeps her eye on me – if I ever stop doing what I like to do and sit on the couch all day watching TV and eating chocolate ice cream, she’ll be ready to take action! (“No, not my ice cream!! I NEED ice cream!!“)

So what can we do about apathy? Again, there are ways to combat this nasty fellow. Meds can be adjusted, such as dopamine agonists; and lifestyle changes (maintaining a better sleep/wake schedule, exercising, setting goals for yourself, and incorporating a schedule that includes social and cognitive activities like memory and thinking activities). Unlike depression and anxiety, though, it has been found that drugs to treat apathy are limited. Additional or different dopamine style meds -may- help, but each patient is different. That is why, again, if you or your care partner see this occurring, make sure this is brought to the attention of your neurologist ASAP

Others

There are other disorders that are classified as ‘mood‘ disorders that can come with Parkinson’s – I am going to just list them along with a short description:

Impulse Control (normally associated with dopamine agonists) – Usually can be controlled by reducing or eliminating the dopamine agonist.
Psychosis – Visual hallucinations and/or delusions. Up to 40% PD patients can be affected. Counseling can help; changes to your meds; also there are new PD drugs that are supposed to help with this disorder.
Fatigue – Constant tiredness can cause mood issues (if you’re tired all the time you’re probably cranky too!) Up to 50% of PD population affected. Troublesome to treat – however changes with your meds and/or med schedule can help; lifestyle changes also can be effective.

Your ‘Team’

Before I close this blog post, I want to make one point that I think is very important in the recognition and treatment of mood disorders – and that is making sure we patients are part of a multidisciplinary approach in treating our PD. What do I mean by that? I mean that each of us needs a ‘team‘ to help us live our lives the best we can with this disease. Not just your general physician and neurologist, but also involving a physical therapist, nurses, surgeon (if wanting/having DBS), and most importantly a psychiatrist/psychologist. It is this person who is best equipped to help a Parkinson’s patient through any mood disorders they may experience. So if possible, try to find a health center that uses this multidisciplinary approach. I have found it to be invaluable in my treatment.

Well, that completes part II of this series; but there are more to come! So stay tuned, loyal readers, and thanks for reading!

Sharing thoughts on my journey with Parkinson's