Constipation and Parkinson’s.

Posted by susan62 @susan62, Aug 25, 2019

Hi everyone. Been awhile since I’ve been involved. My Parkinson’s has been doing pretty well for 2/3 of a year now with the exception of REALLY, REALLY bad constipation!!! I have been drinking a lot of water(60 oz a day), walking 5 days a week(3-4 miles each day), and trying to eat high fiber foods. Nothing seems to work much. I have taken Magnesium Citrate on a couple of occasions and tried an enema on a number of occasions too. These work for a short time, but then it is the same old, same old thing. I’ve tried Ducolax and a number of other stimulant laxatives. Same result. Not much. Last week I took the Magnesium Citrate again and this time when I drank it I had a horrible burning feeling in my upper GI tract. Had to go to ER. Did CT scan and could find nothing. Saw a GI doctor at the Mayo a few months ago and he had me do some tests and determined that I most likely have Bowl Evacuation Disorder. He ordered evaluation to see if I am a candidate for therapy. I haven’t scheduled that yet. I plan on calling his office tomorrow and request to see him again. I just feel so awful. Constipated most of the time, nausea, bloated, especially in am, and cramping. I wake up every morning feeling very bloated with considerable cramping. This is NOT normal!!! So that is my sob story. Am I going crazy? I am sincerely starting to think so. Has anyone had or have a similar experience? Your input would be greatly appreciated.

Also people I want add on if you ever plan on walking outside by yourselves with a rollator please get something like the Apple Watch which pears up with your IPhone. The Apple Watch has a chip in it that if you fall and are unable to get up within 3 seconds it will automatically call 911 and emergency contacts for you. As long as you have your GPS set on precise position the emergency personnel will know exactly where to find you. This feature is only found o the Apple Watch 6 series and up. It’s a great safety tool. I also use it in the gym to record all of my workouts.

I am uncertain if Garman, Samsung, or Fitbit have this sort of feature or not. I just happen to be an Apple man so keeping everything simple in my life I bought the Apple Watch!

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@obx1982

I don’t mind sharing at all . Mine all started back in college. I was studying to become a paralegal at our local community college here in Wilmington, NC back in 2010. My wife had noticed for sometime but never told me or my family physician that I was walking leaning forward. The only thing I was noticing is that it was getting harder and harder for me to concentrate on things. I thought it was because of some of the new meds I was on. Please understand I don’t just have PD I am also fighting stage 3 kidney disease, hyperthyroidism, neuropathy, and bipolar 1. The neuropathy only affects my feet. I have very little feeling in them so I have constantly glance them over for blister and what not. It’s no biggie. But long story short I had a stupid ass dr put me on methadone for my feet and I got sick as a dog. Needless to say no I don’t take any meds for my feet. I just keep them stretched out and I’m ok. Yes it’s all a great combination. Talk about a Whammy! So I thought it was meds were messing up my concentration.

Being that I couldn’t retain things to well I never did become a paralegal but my condition of leaning forward while walking never changed. My wife noticed it even more when we went to Disney in 2018 in FL and I would walk fast. My arms didn’t sway back and forth much and I was leaning more. Now that concerned her even more. Finally she told me what she had been noticing and told my family physician. Immediately put me in touch with a PD specialist. The PD specialist immediately sent me off to Duke University for a brain scan for PD. Then I sent off to another hospital for a contrast MRI of my brain. After about 2 or 3 weeks we were told I had PD. Now I had another diagnosis to add to the pot! When I saw the PAC who was the specialist on PD had given my wife and me the full low down of what I had I was put on carbidopa-levodopa right away. I was thinking to myself oh great another medication to add to the 12 I’m already on. When I was diagnosed with PD I weighed approximately 195 pounds and blew up to 250 pounds in that short of time. I got so depressed by this devastating news I literally stayed in bed for close to 9 months. I would get up to go to the bathroom. I would leave the house for doctor appointments only and I talked to no one else but my wife and doctors only.

Now to put the cherry on top of the cake my family physician wanted me to see a kidney specialist. My family physician was not impressed with my blood work on my kidneys. Boy things were just looking so wonderful. So at this time I weighed in at 250 pounds. And I was told that I was at Stage 3 Kidney Chronic Disease brought on by to many years of being on lithium for my Bipolar 1. The kidney disease is irreversible but by losing weight and eating right could keep it from going any worse. This specialist set me up with a nutritionists. That’s all she wrote. Now I was determined to get better with everything!

Now I had several good things things going for me: 1) a wife that noticed things and spoke up to my physician, 2) specialists that listed to us and right away sent me in for tests, and 3) a GREAT nutritionist. Eating right everybody is the key for PD and every other ailment you may have. I have checked the Mayo Clinic, John Hopkins, Duke University, Michael J Fox, and the Parkinson’s Association of the Carolinas websites for all the different foods to and not to eat since not having a nutritionist any longer. I want to eat the best that I can and do the best that I can to prolong the enviable. I’ve PD but I can slow it down some. 4) I suggest that EVERYONE speak with a therapist! I LOVE my wife with all of my heart. She I also my best friend! But sometimes I do not know how to say or talk to her about things…this is where a therapist comes in and teaches us to become better partners or spouses. It is NOT a sign of weakness. It is a sign that we care about the ones we live the most! Think about it… And 5) as ALL of you already know without me saying a word EXERCISE IS THE KEY TO ALL OF THIS! I am blessed that my insurance pays for my membership so that I may do what I must do daily. I am able to utilize the Silver Sneakers programs and do there workshops. Please people if you have the means to go and even if you don’t want to to go GO ANYWAY!!! I go Monday through Friday for at least 3 hours. I ride a bike one day for 45 minutes then some free weights. Next day the treadmill for 45 minutes and the machines. The next day I’ll use the bike again for 45 minutes the ball exercises for stability (yes it is difficult but the more you do it the easier it will become). Stability for PD is very important and you know that! I do Yoga, I walk up to 5 miles with my rollator. I do take Sundays for certain off and most Saturdays depending on my mood. People it’s all about movement, stretching and getting out there.

This past summer I did a 5K virtual walk for the PD Association of the Carolinas which equals to a little over 3 miles. Since I brought in the most donors I won. My gym has agreed to allow anyone with PD to use there bicycles and treadmills free of charge in honor of efforts with PD. Believe me People it’s pretty cool be recognized for being PD to light!

Now as far as your other question. When I was younger constipation wasn’t even an issue. I was go very regular. It only became an issue once I hit into my 50’s. When I hit my 50’s and now I’m actually 57 I make my own shakes every day. And they consist of a lot of different fruits which are really for us especially if you are willing to be somewhat active. This is what I do and it helps me: I use 5oz skim milk, 3oz OJ, one scoop carb free vanilla I cream, 1/4 papaya, 1 whole apple no seeds leave on skin, 1 whole pear no seed leave on skin, 1 whole tangerine remove pit leave on skin, 1 whole peach remove pit leave on skin, one cup FROZEN BERRIES ONLY, one whole banana, 1/2 cup pineapple, 1/2 mango your choice on skin, 1 kiwi your choice on skin, 1/2 cup Kale, 1/2 cup Baby Spinach, a PINCH OF CINNAMON AND BLENDER IT UP! I Love it! If you eat to much Papaya in a day you will get the runs! Papaya is the best natural source of fiber. Also I have grown up and still to this have a bidet. Except now I own an BIO BIDET. You remove your existing seat and install this guy. You may purchase this gem either at Lowe’s Home Improvement or at Amazon. The warm water will stimulate your rear to want to go. Believe me very little constipation or Miralax in this house. I hate being away from home!

I hope I answered everyone’s questions! If anyone needs anything else please ask away! John

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@obx1982

Thanks for all of that great information. I'm glad that you are so proactive about your health and well-being and that you have such great support from your spouse. You are fortunate in many ways in spite of your many diagnoses.

Congratulations on your weight loss and ability to adjust your diet to help your kidney problems. That was quite an accomplishment!

Have you ever participate in Connect's kidney discussions?

Here is the link, https://connect.mayoclinic.org/group/kidney-conditions/, The members there will undoubtedly be helped by your posts as well.

I hope you continue to post in the PD group as well. We all need inspiration from someone who is proactive in managing PD.

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@hopeful33250

@obx1982

Thanks for all of that great information. I'm glad that you are so proactive about your health and well-being and that you have such great support from your spouse. You are fortunate in many ways in spite of your many diagnoses.

Congratulations on your weight loss and ability to adjust your diet to help your kidney problems. That was quite an accomplishment!

Have you ever participate in Connect's kidney discussions?

Here is the link, https://connect.mayoclinic.org/group/kidney-conditions/, The members there will undoubtedly be helped by your posts as well.

I hope you continue to post in the PD group as well. We all need inspiration from someone who is proactive in managing PD.

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Thank you very much! I do feel very lucky and fortunate. That is why I am willing to share as much as I can with everyone as I can. PD may be tough but there is MO NEED TO GIVE IN TO IT! If I keep doing what I’m doing I’m only hoping that I can prolong the inevitability and that’s ok. Look at Alan Alda he’s in his 80’s still playing tennis and running and not letting PD get him down. I want that to be me! Right now my balance is off so what am working on??? I’m working on my stability on the workout balls! I WILL because I have the determination be able to do a sobriety test if I ever drank, lol! I have a very positive outlook and I WILL NOT GIVE UP! So if my story inspires just one person then I have done my job! Believe me at 57 I never imagined myself having to walk with a cane or a rollator. But I’ll make you a bet by December I WILL HAVE THE WORKOUT BALL MASTERED AND I WILL HANG UP THE ROLLATOR FOR A FEW YEARS! That is my goal. When I set a goal I usually get it done earlier then planned! As an example I spent 4 hours at the gym. 2 hours on the workout ball. Then I came home and did another 2 hours on that ball. I am damn determined to get rid of that rollator. When I use it I feel I'm 77 instead of 57.
I will check out the link you sent. Thank you for the kind words. Keep your chin up, lol as every PD is supposed too, lol!

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Hello All:

The Davis Phinney Foundation is active in education and research for Parkinson's patients. On September 21, they will host a webinar on Constipation and PD. If you would like to register for this event, here is the link,
https://secure2.convio.net/dpf/site/SSurvey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=2521

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My husband with Parkinson also has the same constipation problem. He walks almost everyday for 50 minutes and drinks frequently. I also make sure that we have plenty of fiber in our diet. Somehow, it could still be 3-4 days before it happens. It is heart aching to watch his struggle with some of these challenges daily.

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@rockwood

My husband with Parkinson also has the same constipation problem. He walks almost everyday for 50 minutes and drinks frequently. I also make sure that we have plenty of fiber in our diet. Somehow, it could still be 3-4 days before it happens. It is heart aching to watch his struggle with some of these challenges daily.

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Hello @rockwood,

Yes, the constipation problem that accompanies a PD diagnosis is very frustrating. I'm sure that you and your husband work on diet, activity, and hydration. With PD sometimes that is not enough.

Most of us with PD also use a fiber supplement, like Metamucil, along with a stool softener like Miralax. These products can be very helpful. Has your husband tried some of these products? Has his doctor offered any suggestions?

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My wife (82) currently sees a neurologist MD, a neurologist PA plus a gastroenterologist for PD constipation problems–spasms mostly which trigger tremors, anxiety, body rigidity, voice whisper, et al. Her approach is to lie down with a hot pad on her abdomen. The spasms abate in a few hours only to return a few hours later. She takes Amitiza (24mg) for constipation and Dycyclomine (20 mg) for spasms. (Results?) It's been suggested she consider seeing a gastroenterologist with a background in PD treatment.

I reflect on all that I continue to read about pelvic floor dysfunction and haven't come upon a GI doc with a background in PD who has made a reported difference. The idea of seeing one has appeal but it would mean a 5 hr drive and my wife and I aren't convinced that seeing a GI doc who's familiar with PD would make a difference.

We'd appreciate comments.

Phil

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@telios

My wife (82) currently sees a neurologist MD, a neurologist PA plus a gastroenterologist for PD constipation problems–spasms mostly which trigger tremors, anxiety, body rigidity, voice whisper, et al. Her approach is to lie down with a hot pad on her abdomen. The spasms abate in a few hours only to return a few hours later. She takes Amitiza (24mg) for constipation and Dycyclomine (20 mg) for spasms. (Results?) It's been suggested she consider seeing a gastroenterologist with a background in PD treatment.

I reflect on all that I continue to read about pelvic floor dysfunction and haven't come upon a GI doc with a background in PD who has made a reported difference. The idea of seeing one has appeal but it would mean a 5 hr drive and my wife and I aren't convinced that seeing a GI doc who's familiar with PD would make a difference.

We'd appreciate comments.

Phil

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@telios Hello Phil,

Good to hear from you again. I'm sorry to hear that your wife is still dealing with these spasms, tremors, and constipation.

From your post, I see that you aren't convinced that seeing the GI specialist with an interest in PD is not your best answer right now. I'm wondering if you have considered Pelvic Floor Therapy (PFT)?

PFT is done by physical therapists with a special interest and training in urinary and bowel disorders such as chronic constipation. If your wife has not seen a pelvic floor therapist, you might consider scheduling a consult with one to see if they could help her.

I would also like to invite @rockwood to this discussion as her husband is dealing with this same problem.

@telios, Has your wife seen a pelvic floor therapist?

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Tereasa: Thanks for your comments and observations. Yes, my wife spent a number of sessions with a pelvic floor specialist and did benefit from the learning; however, she never took hold of the specific exercises prescribed by the therapist and now can't recall why. I suspect the instructions weren't fully understood and consequently a loss of interest followed.

I want to again ask if going from our gastroenterologist to one who also has expertise with PD is to expect significant change. I ask because I see no literature that extols the merits of such an expert in dealings with PD patients. My question hinges on a 5 hr drive to see such a person as well as doubt that he/she would be any better than our present gastroenterologist.

Does anyone have an answer to my doubt?
Phil

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Ever since I was a child I grew up with up with what is called an American Bidet. You remove your existing toilet seat and replace with this toilet seat that squirts warm warm water either at or up your rectum to stimulate your system. As I have gotten older and I am on many different medications and I have CKD at Stage 3 and PD having this toilet seat is a God Sent Blessing! I only know of this device because my father needed one while I was growing up. Once he loved it he place one on every toilet in every home we owned. The brand name is Bio Bidet and you can find them at Lowe’s Home Improvement or on Amazon. Just pick the model you desire and off you will be going!

Another thing I also do is make a papaya smoothie. Papaya is a natural fiber and is GREAT for making people go. If she is eating nuts or peanut butter stop that will bound anyone up very quickly! Here is what I like to make but before you anything check with her doctor first:
1/4 fresh papaya
1/2 cup fresh or frozen strawberries
1 cup frozen mixed berries
1/2 fresh mango
4 ice cubes
And blend it all together in a blender. I absolutely love it!
Most doctors are Not familiar with the bidets so I’m not sure what his/her opinion will be but it beats more pills! I’ve using a bidet since I was around 12 and I hate being without one. Once your use one and get used to it you will be hooked forever. You will never want to leave your home again!

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I grew up in a tropical island where papaya is very popular and I can swear to its efficacy in digesting, almost magical. The problem is how to get fresh papaya in the U.S. unless you live a certain parts where they are available in selected months.
Thanks for the tip on American Bidet.

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@obx1982

Ever since I was a child I grew up with up with what is called an American Bidet. You remove your existing toilet seat and replace with this toilet seat that squirts warm warm water either at or up your rectum to stimulate your system. As I have gotten older and I am on many different medications and I have CKD at Stage 3 and PD having this toilet seat is a God Sent Blessing! I only know of this device because my father needed one while I was growing up. Once he loved it he place one on every toilet in every home we owned. The brand name is Bio Bidet and you can find them at Lowe’s Home Improvement or on Amazon. Just pick the model you desire and off you will be going!

Another thing I also do is make a papaya smoothie. Papaya is a natural fiber and is GREAT for making people go. If she is eating nuts or peanut butter stop that will bound anyone up very quickly! Here is what I like to make but before you anything check with her doctor first:
1/4 fresh papaya
1/2 cup fresh or frozen strawberries
1 cup frozen mixed berries
1/2 fresh mango
4 ice cubes
And blend it all together in a blender. I absolutely love it!
Most doctors are Not familiar with the bidets so I’m not sure what his/her opinion will be but it beats more pills! I’ve using a bidet since I was around 12 and I hate being without one. Once your use one and get used to it you will be hooked forever. You will never want to leave your home again!

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Based on your bidet recommendation, I've discovered that four friends have them and, like you, rave about theirs. I just bought a TOTO bidet and am about to install it. I expect my wife will share your enthusiasm about it. Also, we're going to adopt your smoothie recipe. Much thanks. Phil

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