Note: I meant to get this post out much earlier as it's somewhat of an introduction to PD. But I ended up only getting it out now because of my previous writing on my DBS series. So if this seems a little like 'old' news, please understand; it gives a decent introduction to PD and how it behaves, and my hope is that newly diagnosed readers will learn a little bit more about PD.
That title sounds funny to me... That's because my Dad's nickname was PD. He never told me the real reason why he was called that - he always said it meant 'Police Department'... If that's really what it meant then I'm pretty sure that he and his brothers.... well, maybe I don't want to know :)
My Relationship to PD
My relationship to PD (the disease, not my Dad!) is, at best, a feisty and annoying relationship. PD seems to creep up on me right when I don't want him too, with that annoying stiffness, slowness, and cramping (dystonia). Plus PD never goes away - he's always there, in the background, just waiting for those wonderful pills I take to wear off. When they do, he jumps out and makes his presence known, in no uncertain terms. As I said, annoying.... very annoying.
What is PD Anyway?
I know that some of my readers may not be aware of exactly what PD is and why he is so annoying.... So in today's blog entry I'm going to try to describe a little bit about what makes up PD. I'll also let you know some of the ways PD annoys me, hopefully with a little humor (although PD is NOT humorous at all, humor is one good way to keep him from overcoming you!) And it's always good to know something about PD, just in case he starts showing up elsewhere in yourself, a family member, or a friend. My hope is that he never does, but still... it's good to know his signs.
PD = Parkinson's Disease
PD (Parkinson's Disease) is truly a nasty fellow. He creeps into the brain and begins destroying brain cells in a little neighborhood of the brain called the substantia nigra. The workers in this neighborhood are the neurons that make a sweet chemical called dopamine. Never heard of it you say? Well, we all need dopamine. In this case, we use dopamine to help move our muscles. Without it, we kinda be like.... couch potatoes - but permanently!
Once PD gets into those neurons, they begin to die off slowly - sometimes taking years for the first symptoms to occur. Our brain is an amazing organ, and it tries to put up a fight by compensating for the loss - that is why it is estimated that one may lose 50% to 90% of those little dopamine neurons cells before one starts seeing the symptoms of PD's invasion! But alas, PD is a ugly and unforgiving guy, and keeps on destroying those cells, resulting is less and less dopamine for use in movement.
So who exactly is this PD? No one really knows for sure - yet. You might compare him to one of those spy guys - black hat, trench coat, dark glasses... not sure of who he is or where he came from. So it is with PD - scientists are not exactly sure of how he sets up shop in your brain - it could be genetics, environmental (i.e. things like pesticides), or a combination of the two... or something completely different! But our doctors and scientists are working on it, and I think we'll unlock PD's true identity and background someday soon. Because once we do that - well, we'll have a much easier time getting a cure and finally ridding ourselves of PD for good!
Let the annoyance begin (unfortunately)
So once we reach that threshold of the brain no longer being able to compensate for the loss of dopamine, we start taking notice that PD is there by having symptoms. These include: tremors, rigidity (stiffness), and slowness of movement. Other recognized motor signs and symptoms include gait and posture disturbances , speech and swallowing disturbances, mask-like face expression or small handwriting - the range of possible motor problems that can appear is large.
Unlike most parkies, I myself don't have PD's tremor, but I have another symptom that PD brings along for the ride - and I'm going to call her Miss Dys-Tonia (or just Dystonia for short). She's a side-effect of the loss of dopamine from PD, and you most likely haven't heard of her. Dystonia is uncontrolled cramping, in most cases (for PD) the feet, lower limbs, and neck. In my case, Miss Dystonia causes my feet and toes to curl inward with an intense cramping; it can also make the big toe curl upwards. This is even more annoying (for me, anyway) than PD's stiffness! It's impossible to walk or even concentrate with one's feet cramped up. Dystonia is a common occurrence that come with PD, affecting up to 40% of patients. There are some ways to help with it, such as Botox shots; but in my case they didn't do anything. So whenever my drugs start to wear off, I can usually expect a visit from Dystonia. Then I have to wait for the drugs to kick in before I can get rid of Miss Dystonia - at least until the med wear off again!
If this was all PD did, well, he'd still be a nasty guy. But no, in the later course of the disease he can begin to affect other areas of a person's brain - causing such things as problems with speech, cognition, mood, behavior, and thought. These can range from mild to severe and causing slow or slurred speech, slow cognitive (or concentration) ability, attention, and other cognitive difficulties. It can even go so far, in severe cases, as causing dementia in the later stages!
Discovery of Levodopa
So how does one combat PD? Unfortunately, you can't get rid of PD and his associates yet - there is no cure. But we do have means of at least cutting back on the symptoms he gives us, and that is by something called Levodopa (or brand name Sinemet).
Levodopa was discovered in the 1960's and has been hailed as one of the greatest medical discoveries of the 20th century. It literally took people who had PD at that time out of nursing homes overnight! Basically, once you take levodopa (orally), it gets absorbed into your bloodstream. From there it makes it's way to the brain, where it passes the blood-brain barrier (a network of blood vessels that keeps bad bacteria, viruses and such out of our brains - pretty nifty huh?). Once it gets into the brain, the brain converts this chemical into DOPAMINE (ah ha!) and that then replenishes our dopamine fatigued neurons! That's why, about 30-45 minutes after taking levodopa, I can 'feel' it wash over me, like a relaxing cloud. My joints and muscles loosen up, dystonia goes away, and suddenly I feel like I did before I even had PD! This is referred to commonly as being 'on' - i.e. the drugs are working effectively.
That sounds great, you say? Well it is, but there are numerous things that can go wrong and keep levodopa from doing it's thing. One is protein - eating protein before taking levodopa can cause it not to be absorbed, because protein competes with levodopa for absorption. So all we 'parkies' have to watch when and what we eat when it's time to take our meds. Also, levodopa works great at first... but after taking it for 4-7 years the body doesn't absorb or use it as well, resulting in shorter times between doses, requiring more levodopa, or simply having it not work at all. This results in what they call 'off' time - the time in between doses where the levodopa wears off and your symptoms come back. As time goes on, this becomes more pronounced and occurs more frequently, resulting in one having to take more meds or take it more often. In my case, after I was diagnosed in 2014, I only had to take levodopa three times a day; now it is every 3.5 hours!
Other Ways To Keep PD at Bay
There are other drugs and means to keep PD from completely taking over - things like Dopamine Agonists, COM-T Inhibitors, MAO-B inhibitors, etc. (Feel free to use the links to check these other drugs out). Again, unfortunately, these only mask the symptoms PD causes; they do nothing to actually stop or slow him down. And they, of course, may have side effects of their own.
Another way to combat PD is via surgery - in my case Deep Brain Stimulation.
This is where wires with electrodes are inserted deep into the brain, with the goal being that, once attached to a neurostimulator and powered up, they will 'disrupt' the mixed-up signals that PD's lack of dopamine causes. This type of surgery is very promising, but ONLY helps with the motor symptoms - not other things like balance and gait. However, the FDA has now approved DBS for patients diagnosed (or with symptoms) for four years (previously was 6-8 years) with the belief that if done early, it may - just may - slow down or stop the disease process! Studies are starting up now to see if using DBS earlier can kick PD out of our brains for good.
Otherwise, the only thing we know that can really, truly slow down PD now is.... exercise! It's been show that doing a moderate exercise routine can slow down the progression of PD. So don't be a couch potato - get out there and do things to keep your body and mind active!
Don't Give Up!
But don't let PD get you down. He's ugly and mean, sure, but there are some exciting things happening out there with research into PD, and I think someday soon we are going to find a way to drive him out of town for good! Check out the 'In The News' section on the right in my blog, where I occasionally list new drugs, research, and such coming down the pipeline. There's a lot going on - in fact, I think that in 2019 we are going to have some of these new drugs now in clinical trials available, and hopefully one or a combination of them will, in the least, be able to slow down and maybe even stop PD relentless advance.
So have faith, and keep living fully one day at a time. And keep up the exercise! Feel free to discuss any other ideas you might have or use to help you combat PD and reduce his annoyance.
Till next time!