[dropcap]I[/dropcap] assume that most of us have read (or seen the movie version) “The Strange Case of Dr. Jekyll and Mr. Hyde“, as first written by Robert Louis Stevenson. But just in case you haven’t, let me give you a quick – and hopefully non-spoiling – synopsis:
Dr. Jekyll, a somewhat mild-mannered doctor (described as a kind, sociable, amiable, reputable gentleman) feels that there is always a battle going on between the good and evil within himself. He’d spent a good part of his life trying to repress, as he believes, the evil urges within him. Failing to do so, he instead develops a serum (potion) to separate himself from the ‘evil‘ side that is within him.
Rather than risking anyone else (or because he’s impatient and reckless), Dr. Jekyll decides that he himself will be the ‘Guinea Pig‘ for his new concoction… so he drinks it! Not only does he change mentally, but physically as well; and thus is born the villainous “Mr. Hyde“. Mr. Hyde is described as “evil, self-indulgent, and uncaring to anyone but himself“. He does horrible acts as Mr. Hyde, including murder – and with each transformation the Hyde within him becomes more powerful. Now Dr. Jekyll begins transforming even without the potion, and finds he has to DRINK the potion in order to become himself again (Jekyll). In the end, for fear that he will become the evil persona of himself, Dr. Jekyll ends up… well, I’ll stop there – you get the picture. If you haven’t read the story, I’d suggest you get the book – the original story is probably free as an eBook somewhere!
So why have I titled this blog entry “The Strange Case of the Parkie and Mr. Hyde“? Well, I think that sometimes we Parkies – myself included – have a ‘Hyde‘ within us we try to repress… And he comes out at times, even when we don’t want him to. “What, Tom?” you say, “When this happens, you physically change into an ugly creature??” No, no no! Now that would be quite a feat… although some of my family and friends might say I’m already a strange creature! But what I mean is that we Parkinson’s patients can sometimes seem to change mentally and emotionally between Jekyll and Hyde.. I know I do!
Here Comes Mr. Hyde!
There are a lot of things that can make a Hyde come out in us Parkies. The most obvious - and the one I'm going to be talking about today - being the ON-OFF cycle that most of us who've had the disease any length of time experience. One minute, your sitting there, feeling good, muscles moving and legs walking... You're in Dr. Jekyll mode! Yep, your meds are working great; the old brain has enough dopamine to function reasonably well; and you are usually in high spirits - laughing, joking around, and participating in activities. At that time it can almost seem like PD is a thing of the past!
But then... (scary organ music begins playing in the background) you feel something starting to stir inside you... maybe it's a finger that begins slightly trembling; or your legs begin to get stiff; or you're not walking as well as you did before; or it seems like a fog is suddenly rolling in on your brain. And it's not even close to the time for your next dose of meds! That, my friends, is the sinister Mr. Hyde starting to awaken. You see, the meds that we take (Levodopa, or Sinemet as we call it) act in kind of 'reverse' way that Dr. Jekyll's initial potion did. It helps suppress all those PD symptoms that we would experience each and every day without them. But as those meds begin to wear off, all those symptoms begin to return, and it's then that the transformation to Mr. Hyde begins.
I have to say this happens to me a lot when my meds wear off, which seems to be the norm lately - after all, it's been 10 years since I felt the beginnings of my first symptom, and 8 years since being diagnosed. And the transformation to Mr. Hyde can come a few ‘undesirable’ traits. Here, for example, are some things that happen to me when the meds wear off and my 'Hyde' emerges:
- I Can Get Mighty GRUMPY! Yeah, I know, how could Tom EVER be grumpy? Well, it’s easy when you are in an off state, let me tell you - it’s no fun being stiff and not being able to move well. And for me, Mr. Hyde's return also means the return of that blasted Ms. Dystonia - i.e. having my toes curled! I tend to wear a frown and/or grimace on my face, and you can hear a lot of complaining coming from these lips of mine! I can get pretty testy with folks when Hyde appears, even if they’re trying to help!
- I have ZERO patience! Normally I'm a fairly patient kind of guy - until Mr. Hyde shows up. Then I tend to snap at anyone, sometimes even my poor dear wife! And if I’m in the middle of something, involving anything more complex than combing my hair, I then want to “Get It Done” NOW - without any regard as to doing a good quality job. Then I (and Hyde) can go somewhere to sit or lay down and wait till my ‘potion’ (i.e. Sinemet) takes effect, kicks me back on, and drives Mr. Hyde away to wherever he came from.
- My Thought Processes Slow WAAAAY down. Dr. Jekyll, when he loses control, and afterward doesn’t remember too well about what he did when his Hyde comes out, is very similar to what happens to me and my Hyde. When I’m ‘off’ it seems like my brain takes a back seat to everything going on around me; I'm in the background while Hyde taken over driving wherever HE wants to go! And good luck during those times trying to discuss a topic with me; or what to get at the store; or explain how something works - most likely I’ll either not be listening (like the adults in the Peanuts strip - all I hear is Wa-Wah-Wa-Wah!); or, like Jekyll, I just won’t remember clearly anything said to me during that time.
- My Emotional State Can Go From One Extreme To The Next. Dopamine is used in the brain for a lot of functions - and when the tanks nearly empty, I can at times almost be bipolar - smiling and talkative one minute, and the frowning and whining and... well, basically being a pain in the butt to everyone around me. Just like Hyde, I can change - and most often do - my tune at the drop of a pin!
Let's Get Physical!
Hmmm... wait a minute! Remember when I said at the beginning that I don't turn into a strange creature when my Hyde comes out? Well, I've been sitting here thinking about that... And although I (and other Parkies) don't physically transform when we go into an 'off' state, there ARE physical changes that do occur when my Hyde seems to be in control! For instance:
- We Move Much More Slowly. It's hard to move when your muscles are stiff and, in my case, the toes are curling and cramped up! Every muscle feels heavy, and simply trying to stand up, or pick up something we've dropped on the floor, can seem like traversing a mountain to us!
- In addition, the rigidity can cause your walking gait to be off. Or, in a lot of cases, we go from larger, normal steps to little "shuffling' steps. You have to be careful when in this mode, because a fall is more likely to occur during those times - and none of us need that!
We might begin to get that "stooped over" look (see image) as was illustrated by Dr. Parkinson when he first wrote about the disease bearing his name in the early 1800's... Unfortunately, this can get worse as the disease advances. (Note: If you'd like to read his original essay on the "Shaking Palsy", you can download it from the internet Archive by clicking here)- Our Speech May Change. I tend to 'shut up' and not talk as much when I'm in the middle of a serious 'Off/Hyde' episode. Others though, might notice their voices soften and they are not heard as well.
- Our Faces May Change! This is called hypomimia - or 'Facial Masking' - where one tends to lose all emotion in their face - a kind of monotone look. This is due to the muscles of the face being stiff or taking longer to move. When you're in this mode, it can be hard for others around you to interpret your mood and intentions. They can't tell what you're feeling - in fact, they might not be able to notice, from your facial expression, whether you're happy or sad... or even that Mr. Hyde has taken over!!
Well, I guess we CAN be more like Mr. Hyde than I thought! Egads, man!!
Can Hyde Be Stopped?
So what's the point in this story? Can we stop Mr. Hyde from coming out and wreaking havoc? Well, sure - just stay 'on' all the time! 
Anyone who's known a Parkie any length of time knows this is impossible - we're all going to experience Mr. Hyde at various times in our Parkinson's journey - and unfortunately it will be that way until that wonderful CURE comes along! So no, he can't really be banished from a Parkie's life completely. BUT, with that said, there are things that we can do to try and limit the amount of 'control' he has over us during those 'off' periods:
- As I've always said - Keep exercising, eating right, and sleeping well. Just doing those things on a consistent basis will help you stay 'on' more in the end run.
- Always try and take your meds on time.
- If 'off' times (and Mr. Hyde) seem to be more problematic than before, talk to your neurologist. He or she may be able to help you minimize the 'off' times - either by adding new meds in the mix; or just a simple thing like rearranging your med schedule may help minimize your off times.
- If need be, and if it's possible, you could put on your headphones and listen to some soothing music; read a book; take a nap; or simply go to your 'quiet' place for awhile till your meds kick back on. I do this myself - that way I'm not around so many people while being a 'grumpy' Mr. Hyde!
- Finally, just be aware when you see or 'feel' an 'off' time - and Mr. Hyde - approaching. I think if we're aware of an 'off' period starting, we might be able to control it better - and kick old Mr. Hyde off to the side of the road!
And finally, to those care partners, spouses and family/friends out there - remember, when we're 'off' and Mr. Hyde is running amok, we are not ourselves. Parkinson's is a terrible disease... and we Parkies have to experience it 24 hours a day, each and every day - most likely for the rest of our lives. That alone can make anyone cranky - then add in the fact that we juggle pills all day long; deal with side effects of those meds or the disease itself; worry about what we eat and when; and on top of that, worry about our future and all the other things that go with having PD... Well, I'm surprised I'm not more cranky than I am already! But realize that if we are being a pain; or snap at something you say; or, heaven help us, even start yelling - it's really not us that's doing that. It's Mr. Hyde and this darn Parkinson's that's acting so disorderly. I can say for sure, at least for me - and I bet for each and every other PD patient out there - that we love and are SO appreciative of our caregivers, family and friends! So just try your best to understand and be patient with us - that Sinemet we took will hit our brain sooner or later and drive that nasty Mr. Hyde back where he belongs; and then you'll get back the old Parkie you once knew!
Well, that’s my “Deep Brain Thought” for today. Please let me know if YOU have a Mr. Hyde emerging when you are ‘off‘ – and how you deal with him – in the comments section below. I really enjoy seeing and reading comments from my readers, but only if they write them! So PLEASE use the comments section and give me – and your fellow readers – your comments and ‘Deep Brain Thoughts‘ on the subject!
Till next time!
