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Hello again, Balance Crowd, I’m back with one of my delightful friends and mentors with Parkinson’s, Chrystal Kafka. Today we are going to tackle everyone’s favorite thing to discuss…. Constipation! That’s right! There’s no such thing as TMI or over-sharing in this blog post. And we might even have a little fun in the process. Sit back, learn from, and relate to a seasoned PWP (Person with Parkinson’s) about constipation. Here is a list of the resources we discuss in the interview. Enjoy!
Balance Therapy: Chrystal! Thank you so much for lending us your honest insight, especially on such a notoriously awkward subject! First, tell us about your background with PD, and what made you become a PD mentor.
Chrystal: My pleasure! We usually think about PD in terms of our date of diagnosis. So, for me, that was 2006, with tremor onset in 2002. I was 40. Most of us know we’ve had something going on for much longer. To be honest I think I’ve had this my whole life. With a klonk on the head in a car accident when I was 16, I guess that might be a fair place to measure a start. At the time of my 2006 diagnosis, very little was known about PD and most doctors were oddly insensitive and dismissive which only further intensified my feelings of devastation and isolation. Eventually, I found comfort in the care of a physical therapist, who told me what I could do instead of what I couldn’t. That positive force drove me forward to seek out all the things we PWP (People with Parkinson’s) can do to help ourselves feel and do better while we wait for a cure. I enjoy passing that baton to the newly diagnosed and sharing with anyone who’s interested or receptive. Today, while there is still a lot we don’t know, the plethora of information is more exciting than ever…and becoming ever more accurate. The science of PD seems to be closing in on a better understanding as well and is otherwise very cool! Apart from that, being a “seasoned PwP”, as you put it, I’ve pretty much run the gamut of what things to do and what things not to do…and continue to exercise both even today.
Balance Therapy: I’m so glad you found the power of PT and other resources close to the time of your diagnosis. Now, let’s get right down to the nitty-gritty. Have you found that drinking water helps with constipation? Do you find that you are not thirsty for water because of your PD?
Chrystal: It’s not just that we’re not thirsty. Same as our broken nervous system tells our brains it’s a good idea not to move, we actually have the opposite of thirst, it tells us not to drink…especially water. Left to my own devices, I would never drink the water that is placed before me even if told “drink this!”. The math thing gives hydration a new spin. Do you know it? You calculate your weight in pounds (or your best friend’s weight if that’s less painful) and divide by two. I like it. Grabs your attention. My best friend weighs 150, so my daily intake is 75 ounces. Yikes! That’s about four “thermosfuls.” It’s easier for me to follow a hydration regimen in terms of thermosfuls. Because there are so many health things to keep on top of, I tend lose track unless they’re concrete and super simple.
Balance Therapy: Some folks avoid drinking more water for fear of incontinence. What are your thoughts?
Chrystal: A trick I learned from a Urologist: “if drinking more water makes you worried about bladder control, the good news is that your bladder is probably just tiny right now, and guess what, the bladder expands! With training, you’ll be able to safely ingest more and more fluid. Start out small and slowly increase water intake over time until you reach your optimum intake.” (This, of course, assumes the patient has no serious underlying conditions.) Also bear in mind, that while your bladder is small, it is more susceptible to irritation, which promotes spasms and incontinence. If that’s an “aha” for you, then listen very closely. If you and your PT work together on expanding your bladder, you may find that paradoxically the more regularly you drink more water, the more your issues with and/or fear of incontinence may go away…
Balance Therapy: We’re learning more and more about early signs and symptoms of PD. What role does constipation play?
Chrystal: Constipation is correlated with a few other “pre-diagnostic” symptoms, such as REM sleep disorder and micro-graphia, which together are considered as markers for early diagnosis. Markers are considered when diagnosing PD because they are signals of central nervous system dysfunction, the kind we associate with PD. Given that diagnosable symptoms may not arise until 70% of the dopamine cells have died, it’s easy to guess that Parkinson’s starts long before an MD can see it. Again, as far as I know, markers are not yet considered to be the cause of Parkinson’s, but may be signals of early disease progression. Because PD is heterogeneous (appears to have many or varying types), not everyone experiences the same symptoms, but those who do win the constipation ticket know how frustrating it can be.
Balance Therapy: How does constipation impact your life to this day?
Chrystal: In addition to affecting mood, energy and overall comfort, constipation can inhibit the absorption of your meds from your small intestines, leaving you to wonder if your PD has gotten worse. With less symptom coverage, you may experience more stress and tension which spirals back to more symptoms (including constipation!) and perhaps even an increase in meds. Essentially, if you don’t stay on top of keeping your bowels moving, you feel like crap! (Sorry 😉 )
Balance Therapy: Crappy seems like an appropriate word to me. What useful information have you learned from the medical community about constipation? What questions do you still have for the medical community about constipation?
Chrystal: The GI experts in traditional medicine told me that going once every three days is normal for some people and a-ok for me.They were adamant. But over time, along with hemispheric muscle-use imbalances (primary Pd-affected side versus the “good” side) caused pelvic muscle strain, which threw my back and QL muscle into spasm. That was a wordy way of saying three days is not good for me. I was unable to exercise for six weeks, a low point and a scary proposition for anyone with PD. I admit I’m stupidly stoic, and that’s how I got there, but so are a lot of other people. And the real key is why would a doc even suggest that for someone with PD that 3 days is ok? I need to do some research on this. I suspect it’s in the literature for “normal“ people, but I wonder if it’s really been adequately tested in populations with PD.
Balance Therapy: Excellent question. I’m hoping our blog readers will have some of their own advice to share.
Chrystal: That’d be great. I find some of the best sources of info come from other seasoned PwP!
Balance Therapy: Do you know of any over the counter remedies that are appropriate for PwP and have any of them worked for you?
Chrystal: I understand from our community that Miralax is still a predominant go-to for PD doctors as well as increased fiber intake and stool softeners. Docs say that because Miralax is inert (can’t be absorbed into your system), it’s OK to use daily and indefinitely, ignoring the product recommendations to “use no more than 7 days.” And this may be just fine. It just doesn’t sit well with me. To my mind, if there’s a dietary alternative to chemicals, then that’s what I choose to try.
Balance Therapy: If you could put your own warning label on constipation remedies for PwP, what would it say?
Chrystal: Be aware that if fiber supplementation seems to be making your constipation worse, it probably is. It may trigger gut motility in persons with normal peristaltic function, but for those of us who can experience low peristalsis, too much fiber can get caught up in the works and leave us feeling very uncomfortable.
Balance Therapy: Tell us more.
Chrystal: I’ve also heard recommendations for magnesium and probiotics. About magnesium, while MDs tell us that PwP do tend to be magnesium deficient, they also caution that you can take too much. So it might be good to have a chat with your doc or a qualified nutritionist about what amount is right for you. With probiotics, some preliminary research suggests that lactobacillus may help with constipation but, like other dietary supplements, probiotics are unregulated, quality varies, and it’s very early in the science of gut biome to be convinced of targeted impact…But you never know. As long as it’s safe and affordable, then why not try?
Balance Therapy: Interesting! There is a lot of more recent talk about nurturing a healthy, diverse gut biome for brain health. Do you find that this helps with constipation?
Chrystal: I wanna say, “sure!” but gut biome is incredibly complex and the science is young. More commonly I think in naturopathic diagnoses, are SIBO (Small Intestine Bacterial Overgrowth – when gut bacteria is imbalanced), and candida (systemic fungal infection). I understand there are some pretty good remedies for these, which is great, but gut science on the whole is still too new to rely on for solid answers. We do know, however, that diet can greatly affect gut biome in both bad and good ways. We’re not sure how it works, but it’s clear the foods we put in our mouths affect our gut biome and therefore our overall health.
Balance Therapy: Speaking of foods, are there any diets or foods that you recommend?
Chrystal: The Mediterranean diet was given highest marks in a recent study of diets for PD conducted by the NIH. If a whole new diet is too complicated to take on now, you can start by eating at least five fruits and veggies per day. For some of us, that’s a big switch already. But remember, fruits and vegetables are not created equal. For example, some are actually binding and bloating. If you are diabetic or have other restrictions, you should consult a qualified nutritionist before making dietary changes. But if you’re a simple case, go for it. Now, if on the other hand, you think you’re ready to level-up your PD dietary smarts, my favorite source of PD-specific nutrition comes from Dr. Laura Mischley, a PhD nutritionist who specializes in Parkinson’s Disease. She’s insanely knowledgeable, delightful, regularly published in the best research journals, and she practices tele-medicine. There’s a great Vimeo of one of her lectures.
Balance Therapy: Perfect. As a PWP, what’s an example of a dietary change you have made to manage your gut health?
Chrystal: There’s so much! In short, I take supplements and probiotics, I follow the Mediterranean diet and I’m gluten-free. But my daily go-to would be the “Gojira” green smoothie. Yes, Godzilla wasn’t green, but this smoothie isn’t always either. It often looks like the “end” result we wish it to become (sorry again). But in spite of its looks, because of the frozen fruit, it tastes pretty good. If you hate kale and dandelions as I do, you can add lemon or lime juice. This is my son’s ingenious contribution and it works great. Note: We lose our ability to taste, but lemon flavor is typically the one that stays with us the longest. Great for masking.
Balance Therapy: Interesting! We’ve covered constipation and its impact on mood, medication absorption, and musculoskeletal problems. Can you tell what role physical therapy played in your recent recovery from low back pain and pelvic floor muscle dysfunction?
Chrystal: Ok, first I have to say I have a new and total appreciation for your field. I hadn’t seen a PT in many years because I didn’t think I needed one. Seeing a PT now has opened my eyes to its absolute necessity for PD. By the nature of this disease, we are physically imbalanced creatures. And we lose proprioceptive connection with our PD-dominant sides, for those of us who are hemispheric (symptoms start on one side). But I’m sure the same is true for all PwP. In other words, little imbalances go under the radar and might not get spotted until something big happens. No matter how well we think we’re doing, we should see a PT regularly to get to and/or stay in balance. Going forward, I’m going to make sure my doc prescribes it for me.
Balance Therapy: Let’s delve into the difference constipation can impact people with Parkinson’s vs. people without PD. What are your thoughts?
Chrystal: Great question! Constipation in PD can be so much more complex and nuanced than for non-Parkies. For many PwP with constipation issues, low to no peristalsis (smooth muscle contractions in the intestines) is our normal state. The occasional constipation experienced by non-PwP doesn’t really compare. Typically, a therapy for intractable constipation should not be conducted on an “as-needed” basis, but as a continual regimen of interventions. In other words, you can’t say, “gee, I didn’t go today, I better drop some magnesium into my 72 ounces of “makes you go tea” and take a 500mg berry pill and expect everything will be fixed by tomorrow.
Balance Therapy: Understood. Could you give us an example of how you would manage constipation when you’re rocking and rolling with your maintenance program?
Chrystal: I would say the regimen to rock-and-roll constipation is integral to all that we need to do for PD in the global sense. Every “bullet point” I’m about to mention amounts to actively reducing stress while maximizing life involvement and enjoyment/stimulation, thus keeping all systems flowing.
• Staying active: You’ve heard the expression, “Parkinson’s is a disease of inertia.” In other words, the more you keep active the more you get to stay active. That’s lucky! 30 years ago we were told to keep still because it felt better. Now we know how to hack the brain and nervous system. Don’t rely on a program of exercise to be your only source of movement. A parkie’s body needs to keep moving… to keep moving. Also true for our brains. The mantra, “keep moving” says it best. Engrossing ourselves in a sedentary project (as we are inclined to do) may steal more than it gives. If possible, it’s invaluable to err on the side of near-constant physical activity. Buy a goat and set it loose in your house! Anything to keep active.
• Exercise: PWP need to move our bodies, period. Added benefit, moving your body moves your bowels.
• Water: I drink the four thermosfuls of water a day, militantly. I’ve become a water zealot. I bore strangers with its virtues as I’m doing with you now. I say, “booyah!!” with each downed container. Well, maybe not out loud. I used to roll my eyes at “water is the secret to life”, but water really is the secret to life…without constipation.
• Diet: Huge! From easiest to most challenging – 5/5; Mediterranean; Mischley. One good tip I forgot to mention for those dealing with chronic constipation, some docs suggest a habit of several small meals a day versus the traditional three.
• Deep Breathing: A regular practice of deep breathing stimulates the Vegus nerve which may be a key factor in healthy peristaltic movement. Never hurts to bring more oxygen to our noggins too. Yoga, jump rope, hiking, PWR! “Bbbbb-raspberry” and other vocal exercises and “sssssssss” exhales.
• Belly laughs: Huge! And bonus, the added benefit of this dopamine source is a great ab workout without the work. Working your abs moves your bowels. Yay!
• Use your brain: There’s a lot of excitement around the concept of neuro-plasticity, or making new connections between brain cells. A super bonus when your body has been busy killing them. Once thought to be the domain of exercise, some studies are showing that brain workouts may be achieving similar effect. The theory here is that whatever you concentrate on builds new freeways to existing cells, enabling more free-flowing traffic in the part of the brain you’re stimulating. The more free flowing traffic, the smarter, more nimble you. Try to exercise your brain with creative hobbies, crosswords and puzzles, crafts, art, learning new things, teaching and/or being productive are all good. But don’t sit too long. Set alarms to keep moving! I’ll admit, this very topic is the hardest for me to comply with. I have so many sedentary passions!
• Community: If you haven’t already experienced the bond of a PwPeep, I so urge you to go out and get you some of that. These friends will know you and “see” you. It’s indescribable really how profoundly satisfying and “safe” a PwP friendship can be.
• “Dopa-mining”: I inventory the dopamine fountains and factories in my life and draw them to me as much as possible. Dopa is mined from the people and things that make our hearts swell with abiding love and satisfaction. It’s so individual. For your readers, it may be grandchildren, a pet, a partner, a best friend, traveling, volunteering, charity, church, practicing gratitude, meditation, playing music, dancing and rhythms, sports, lively conversation, making or seeing great art, a favorite comedy show, etc. These are just a few ideas.
• Massage and stretching: Huge! Human touch, tension release, nervous system regulation, and it feels good!
• SLEEP!: Another huge topic. The goal is eight uninterrupted hours. Hah! There are so many exciting discoveries about sleep. I’m just reading up on that now.
• And finally, optimizing meds: this is complicated, truly individual and a subject for you and your doc, but I will say this, meds cannot be optimized in a vacuum. That is, in order to get the most out of your meds, you have to use all the artillery at your disposal, let’s call it “homework”, to be as healthy and vibrant as you can be. And if it’s not abundantly clear yet, to achieve this goal, you must also not be constipated! Your meds versus all the other things you must do to feel good have a circular relationship. If you started with meds and you feel better, don’t stop there. Now is the opportunity to get to do your homework. The better you feel by consistently doing your homework the less likely you will feel the need to increase your meds over time. This is a proven, precious savings of a precious commodity. Granted, this list of homework items – staying active, water, diet, exercise, dopa-mining, community, belly laughs, brain hacks, deep-breathing, massage, sleep, meds optimized – may feel like lot of wobbly plates to keep spinning on seemingly spindly sticks, but this is an incredibly worthwhile investment in your happiness and the long arc of your PD.
Balance Therapy: Chrystal, you are a delight and a wealth of insight. Thank you so much for sharing your thoughts and experiences. I hope this isn’t the last we’ll hear from you!
Chrystal: My pleasure. It’s an absolute honor and, as always, I hope you find this useful.
Physical therapy along with exercise is essential in the management of Parkinson’s disease. Physical therapy for Parkinson’s targets stiffness, freezing, small movements, slowness, impaired posture, weakness, imbalance, falls, and difficulty walking. Individuals with Parkinson’s disease often suffer from many unpleasant symptoms. More and more research shows that exercise is important slowing the progression and decreasing the symptoms of Parkinson’s. Dr. Valerie Johnson’s approach to working with Parkinson’s disease is driven by research and enthusiasm for those who want to improve their condition. At Balance Therapy, we strive to get you functioning at your highest level of fitness, activity, and health.
But the most important gift she gave me was a different understanding, on an emotional level, of the value and importance of the exercise in which she was training me. For instance, she summarized that she was ‘retraining my brain’
I cannot be strong enough in my recommendation to seek out Dr. Johnson, or physical therapy. The education in exercise technique is immensely valuable. The gift of a transformed mindset regarding real engagement in that exercise is priceless.
Thanks to Dr. Valerie Johnson, I have changed my outlook on life. I can live with Parkinson’s, it will not defeat me…
The results have been immediate. I feel better (more free in my movements) than I have since my diagnosis and will be discussing dropping one of my medication at my next neurological appointment.
“Valerie, you are the best! You put up with my whining and encouraged me every time. I did my homework because you care so much! I’m still balancing -it’s become a natural routine for me-thanks to every there (360 Balance, Austin, TX). I’ll be back if I need fine tuning.”
“Keep up the great work, Val! I went to you for about two years for chronic vestibular balance and dizziness issues, and now I am so much better and these issues do not hinder my lifestyle. I think your optimism and energy were as important as the vestibular rehab exercises. You were more than just a physical therapist, but a PT/Life Coach! Thanks again for everything!”
By Brian George How a Physical Therapist specializing in Parkinson’s disease (PD) changed … saved my life as I know it. I was diagnosed with PD a year ago after experiencing symptoms for a couple of years. I...…