I think this will be my last posting in this series, since I have covered a lot already. But today's topic can be... well, kinda gross or weird to talk about. But that's the point of this series - to 'bring out' those under-reported and not-often-discussed symptoms related to PD. So here goes - today's topic is:
Gastrointestinal Issues with PD!
Now I can tell you, I do love food (especially chocolate... yum!) And we've all heard that the way to a man's heart is through his stomach... well, in the case of gastrointestinal dysfunctions of Parkinson's, that is definitely NOT the way to my heart! Unfortunately, it turns out that gastrointestinal issues are one of the most common non-motor symptoms of PD. This is especially true for me - in fact I would almost say that it is one of my most troublesome problems with PD.
So let's dive into some of these issues.. The first one up is one of the most common:
No one, trust me, likes to talk about constipation. In fact, it never seems to fail at our house that, during supper time, there is always a commercial on TV talking about some drug for constipation - usually with a very non-appetizing description of some of the symptoms!! Irregardless, it is one of the most common PD symptoms, occurring in almost 80-90% of Parkinson's patients. In fact, it is now believed that chronic constipation earlier in life may be a forbearer to developing Parkinson's later on!
But even though it is one of the most common non-motor issues of PD, it is one of least talked about openly. So what do we mean by constipation? The 'general' definition - especially for PD - is: "Constipation is defined as having fewer than three bowel movements per week." But... it's not that simple, actually. That's because each of us are different; and what constitutes constipation typically varies from person to person because our usual bathroom patterns differ. Some of us go every day, while others may go only three or four times per week.
Even though it's something we just don't talk about much ("Oh good morning, long time no see... Been constipated recently??"), it can be a really annoying side-effect of having PD. Not just that bloating feeling, along with the discomfort of having - how can I put this? - to use extra effort when one has to go; but it can also be downright dangerous! Being constipated constantly could result in what is called a bowel impaction - Not only is that extraordinarily painful (from what I am told), but it could require surgery; and if left too long it can cause severe illness or even death!
So why are we Parkies more prone to constipation? The gut moves stuff through it via a series of contractions; normally this is automatic and we don't notice it. And as we know, the lack of dopamine (a neurotransmitter) in the brain in Parkinson's patients impairs control of muscle movement throughout the body. So much so that bowel muscles can also become slow and rigid, resulting in matter being left longer in the bowels. Result? Constipation... Even worse, the various medications we take for PD can actually cause constipation or make it worse!!
So what can a Parkie do? First, make sure you drink plenty of water each day! Water helps lubricate the bowels and thin food out, letting it pass more easily. Practice good toilet habits (i.e. when nature calls, answer that call ASAP! Waiting around will only make it worse!) If you think your medications could be responsible, bring it up with your neurologist - sometimes different brands or types of a medication may help. Increase your fiber intake - fiber helps the gut move things along a lot better (but see note at end of this section). Some studies have found that probiotics can help ease constipation associated with Parkinson’s disease. And one of the most important things (here I go again!) - EXERCISE! Increased physical activity helps with dopamine; and not only that, abdominal muscle exercises help activate the digestive system. Steady but moderately strenuous exercise, such as walking, swimming or even light weightlifting, is one of the best ways to accomplish this.
Finally, if you have to - laxatives are available to get things working again. Laxatives stimulate the nerve endings of the colon, causing rapid removal of bowel contents. But be warned - Over time, stimulant laxatives can damage the lining of the colon, causing even greater difficulty with constipation. Not only that, but one can become dependent (addicted) to stimulant laxatives, resulting in having to constantly use them to be able to 'go'. If you need some kind of laxative, I think it's better to use what is known as a "stool softener" - a type of laxative that simply causes more water to be drawn into the bowel easing constipation. I've used these successfully when needed, and they do not cause dependency issues. And remember: Before starting any exercise program, or starting to take things like fiber supplements or laxatives, TALK TO YOUR NEUROLOGIST FIRST! Make sure they are aware of and approve what you are doing!
Note: Although fiber is good for you and for constipation, you have to drink enough liquids in order for the fiber to do it's job. And avoid fiber supplements if you have problems swallowing. Finally, don't go overboard - too much fiber can actually CAUSE constipation; especially those with other digestive issues!
Now here is something I am very familiar with. "What the heck is Gastroparesis??", you say? The official definition is: "A condition that affects the stomach muscles and prevents proper stomach emptying." Tom's definition - although similar - would be, "Delayed stomach emptying". This is a condition where food that you eat takes a longer time to process and get out of your system than a normal person's does. This condition can occur by itself; but with Parkinson's it can occur in 70-100% of patients!
So what are the symptoms of Gastroparesis? Most common are nausea and a full feeling after eating only a small amount of food; other symptoms may be heartburn, excess burping, indigestion, and bloating. The "Why" is a little more complicated: Sometimes certain meds can cause this; also an infection of the gut - H. Pylori - can play a role by modifying the way the gut processes food (BTW there is an easy test for this!). With PD patients, it may be a combination of ALL of these; but mostly it's because of (surprise!) the lack of dopamine... As our muscles slow down and become more rigid, so can our gut muscles - resulting in food taking longer to digest.
This, however annoying, may not the the major issue with Gastroparesis and Parkinson's - it can also affect the timing and absorption of our Levodopa! If you remember Parkinson's 101, Levodopa can only be absorbed in a certain section of the small intestine. If your gut isn't processing food properly, it can delay the time that your Levodopa actually gets absorbed into the bloodstream, resulting in a longer off-time. Not only that, at times it can interfere enough so that it doesn't get absorbed at all - resulting is a complete loss of benefit! (known as drug failure) When that happens, one is left with most, if not all, of their PD symptoms coming back in full force, and then having to wait until the next scheduled dose time!!
So how do you check to see if you have Gastroparesis? There is a outpatient test called a 'Gastric Emptying Scan'; this requires you to go to the hospital or other imaging center. There you will be given a small food item - usually a scrambled egg - that has been infused with a special low-level radioactive isotope. You eat the egg; then at intervals of about 15 minutes, a special x-ray 'picture' is taken of your stomach, where the egg shows up plainly (due to the isotope). This then measures the amount of time it takes the egg to be digested.
Side-Note: I had this test done a few years ago... for a normal person at least 1/2 or more of the egg should be digested within 60-90 minutes. In my case, after 90 minutes, 80% still remained - only 20% had been digested!!
This, for me, is one of the most annoying parts of Parkinson's... because my system processes food so slowly, I am constantly waging a battle with the timing of my Levodopa. For instance, in the morning when I wake up at 6am, I take my first Levodopa dose. Since I usually have nothing (or very little) in my stomach at that time, the Levodopa kicks in around 40 minutes later. No problem, you say? Well, when the time for my next dose comes around, I have eaten breakfast - if I don't wait long enough after eating, that next Levodopa dose may take 1-2 hours to get to my brain! You can see how that can wreak havoc on your medication schedule. Even worse, I've had numerous times when - especially after a large meal - I get a complete dose failure and I never get back "on" until the following dose time!! Needless to say, this can affect your life, the things you do, family event times, and such. This, along with that accursed dystonia, were some of the big reasons why I choose to have DBS.
So how can we combat this? There, unfortunately, have not been really good studies on this, nor any universally acceptable approach. Some things that can be done, though: Work with your neurologist to come up with a better schedule for med doses - maybe that means you take smaller doses but more often. Watch what you eat - protein especially, and get the help of a nutritionist trained with Parkinson's in mind to help you eat the proper foods. One thing that was suggested to me (which I actually find hard to do, believe it or not) is to, as they say, "graze" all day. In other words - eat smaller amounts of food basically all during the day - don't limit yourself to just the 3 big meals each day.
There ARE prescription drugs that are reported to help with this condition. But if you have Parkinson's, AVOID THESE DRUGS! A lot of these drugs work as a dopamine antagonist (antidopaminergic); as such they can be used to treat GI problems in people without PD but cannot be used for those with PD because these drugs (such as Metoclopramide hydrochloride) negatively impact dopamine systems in the brain. What this means is that they get into the brain and then BLOCK DOPAMINE - which is something a PD patient never wants!! There are currently NO approved prescription meds - that I am aware of anyway - that can be successfully used in PD patients, except for Domperidone - which speeds up the gut effectively but doesn't get into the brain. Unfortunately this is not available anymore in the US. But there are clinical trials for new drugs that help with Gastroparesis but DO NOT go into the brain. Check Fox Trial Finder to see if any of these trials are available in your area.
One thing I am excited about is the just-approved med for Levodopa - an inhaled version (called Inbrija). This works as an inhaler, and thereby completely bypasses the gut. Levodopa goes directly from the lungs to the bloodstream, and then on to the brain - it is said that one can be "on" within 10 minutes!! This should be available sometime in the spring - but whether it is priced in such a way that we poor PD patients can afford it... well, that's another whole blog post I am working on!!
Drooling and Dysphagia
Whenever I hear the word "drooling" I immediately think of Pavlov's Dogs - but drooling in PD is no laughing matter. Excess drooling in PD (called sialorrhea) is actually a non-movement symptom even though the root cause is motor - this is due, in part, to decreased coordination, slowness of movement, impaired swallowing and dry mouth. "Now wait a minute, bub... dry mouth? How can that cause drooling??" Well, as we know, in PD the muscles (and stomach as shown above) slow down, including saliva secretion - which is actually reduced in PD! Then if the person also has difficulty swallowing (dysphagia) this can cause pooling of saliva in the mouth, resulting in drooling. Drooling occurs in 10-80% of PD patients; not only is this very embarrassing for the patient themselves, but it can also be bad for oral hygiene.
There are a few things one can do for this issue: chewing gum or sucking on hard candy; drugs and patches (for instance, Glycopyrrolate, Atropine, Scopolamine); and even Botox injections into certain glands in the mouth. Again, see your neurologist to determine the best solution for you.
Dysphagia usually occurs with or is one of the causes of drooling - this is the scientific name for swallowing issues. This can occur anywhere from 35% to as many as 82% of patients. As with drooling (and most everything else with PD!) dopamine loss results in the muscles in the throat slowing down and not working properly. This can be a MAJOR issue in PD, as incomplete swallowing can result in food particles going into the lung and causing infections (such as pneumonia)!
To combat dysphagia, going to a speech-language pathologist may be recommended, as it can help the patient strengthen the throat muscles and find better ways to swallow. Sometimes diet changes can help, along with a GI or nutrition specialist. And of course, having your neurologist study your current medications could reveal an issue that might be a cause.
I myself have - so far, anyway - not had this problem. But I will relate that before I was diagnosed with PD, the current neurologist I was seeing at that time had put me on an anticholinergic (Artane) - which DID, at the time, help with my foot/toe cramping... However, I was having a lot of swallowing issues - choking on food, drinks, etc. Turned out it was the Artane - once I got off of that, within a couple of days my swallowing returned to normal! That is why it is always very important to discuss these issues - and your medications - with your movement disorders neurologist.
That's All, Folks!
Well, that's about it on digestive (gastro) issues... and thus comes an end to this series of posts. There are a number of other "Illegitimate" PD issues I could discuss - sexual issues, mental issues, and such - but I believe I have touched upon the most common ones. I leave the rest for you to research on your own.
I hope this series has helped those of you without Parkinson's relate to some of the issues we Parkies face; and not only that, but also for care partners in helping them see and deal with these issues in those of us with PD. Again, the issues in this series are very common, but not discussed as much as the motor symptoms are; so hopefully this has allowed those individuals to 'see' things in those they are helping with PD to help them 'bring it out' and discuss it with their doctors.
And for us Parkies out there: Remember, even if you experience some of these "Illegitimate" issues, I hope that I have impressed upon you to NOT be ashamed or embarrassed in bringing them up or discussing them with your care partner and neurologist! They are there to help you - and, in a lot of cases, there ARE solutions or things you can do to either eliminate or at least reduce the problem. And that, folks, will make living our lives even better!
Till next time...