Parkinson's and gastroparesis - Parkinson's Movement

Parkinson's Movement
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Parkinson's and gastroparesis

lauralizzie
lauralizzie

I have had PD for about 7 years, i was officially diagnosed end of 2013. I have been managing the symptoms and have gradually increased the drugs I take. However, about a year ago I started to experience some new unpleasant symptoms which have got worse in the last few months. I have now been diagnosed as having gastroparesis (which can be brought on by PD). I am finding it really difficult to manage the gastroparesis because I love food and eating. I am having to eat very small amounts of food and all the foods which help with PD seem to make the gastroparesis worse. In an article I read it stated that there are no drugs that help this illness that you can take alongside the PD drugs. Yesterday I felt so hungry I had a very small curry for lunch followed by some light buffet food in the evening. I awoke this morning to a huge bloated stomach, feeling queasy but peversely feeling hungry. I have hardly eaten today and am hoping that the huge distended tum will have improved by tomorrow. I am starting to lose weight, which is fine at the moment as I have the weight to lose but i am worried about becoming underweight. I can feel a bile like feeling in my tum and 3 times now i have retched.

Are there any people out there with this condition who could give me some advice/tips how to alleviate the symptoms.

39 Replies
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Here's a link about it

diabetes-book.com/gastropar...

Thank you

Do you know what your BMI is?

My BMI is 28

I don't think you have to worry about being underweight until your BMI is 20 or below.

Thanks, what I meant is that since I have had gastroparesis my weight has dropped by nearly 2 stone, if it carries on at this rate then give it another year and I will have to worry about becoming underweight.

Another thing that might help is a product made by now. It is black walnut, cloves, wormwood tincture. Just in case there is some kind of a bacterial overgrowth, take 3 dropperfuls in a small glass of water before going to bed. Continue doing that, you can take a break when you feel better. That tincture sure has been a lifesaver for my family many times I have tried different tinctures by different makers, always go back to Now product. When I say dropperfulls I mean just as high as it goes when you press it and release it to draw the liquid up.

MBAnderson
MBAnderson
in reply to parkie13

What's the name of the product?

parkie13
parkie13
in reply to MBAnderson

NOW brand

Green black walnut wormwood complex herbal supplement

thanks parkie i just sent away for some.ill try anything.

Hi, really works. Upset stomach be gone.

High-dose thiamine has improved my gastrointestinal peristalsis. If you are not already taking thiamine it is well worth a try.

What meds are you taking?

I am taking Rasagiline, Requip XL and Sinemet

I have gastroparesis and PD. I just started seeing a specialist at the Cleveland Clinic. I am doing a “Smart” pill test this week and

Will meet with Dr.. Cline the following week. This is his specialty, so I am hopeful that he can help me in some way. I’ve done the small meals often route, easy to digest food, taken Domperidine (ordered from Canada). I have stopped losing weight, but still get bloating in my stomach/constipation, I will post results, if any, with this new gastro Dr. i’m Told he is one of a few Drs. In this field.

That sounds hopeful, look forward to reading your post.

I’ll be interested in your thoughts on Cleveland Clinic for PD, including constipation. My mother lives in Pgh and we would visit Cleveland Clinic if beneficial. Thank you and best of luck.

I have a wonderfuk movement specialist there, Dr. B Walter. He does DBS, as well. Once did it live for a PBS station. The Clinic is great for providing newest treatments, but you usually have a wait. I had to wait almost 3 months to get this Smart Pill procedure done. I’ve seen My Dr. for almost 15 years and plan on another 15. He runs a wonderful boot camp for Parkinson’s Once a year . Not sure when the next one will be, but it would be worth the drive from PIT. I’ll post it when I find out.

How does one order Domperidine via Canada? Our MD says he cant get this med for us. I understand it is OTC in the UK.

I use a Canadian online pharmacy called CanadaPharmacyOnline.com. You Will need a script sent to them from a U.S. Dr. there are a number of other pharmacies there you can use. I use them as a friend gave me the name. They serve a lot of U.S. customers. Back when Azilect was super expensive in the U.S. I could get it there for half the cost of in the U.S. it’s a shame to have to do that, but I could not afford the $1500 a month they wanted here. Usualy you can find a Dr. here to write the script . It helped with my nausea right away, but not with the constipation. I could at least eat without vomiting. Just had to be small meals. Still everything moves VERY slowly. I’ll keep

Posting what my CC Dr. suggests. ☺️

Thank you so much!

Wish I could help. You're in my heart.

Have you tried stopping all sugar and gluten, and deep fried food?

Not yet, will have to try at some time

Cut out sugar and refined carbs which cause hardening of tissues via advanced location end products.

rngrav
rngrav
in reply to rngrav

I meant glycation, not location.

Indeed, advanced glycation end products.

Hi Lauralizzie. I’ve suffered from gastroparesis for 20 years. I was nauseous & or vomiting about every evening. Two years ago a new Dr put me on Urecholine. It has worked like magic for me. I seldom feel nauseous and NO vomiting!!! Hope you find relief soon.

I bought the Anthony William books about food. I like his approach because it is possible to find reasons why certain foods might suit or not suit one's own system. Also because the attitude is about healthy eating not dieting and use of fresh fruit and vegetables is high priority. I looked at the work of Lloyd Mear and educated myself as to how I might support my husband. It seemed to help with relieving constipation, and his mood rose as a result. Good luck and enjoy finding out what works for you.

LauraLizzie,

Sorry to know that you are going through this. My mother had similar condition that you described ( though not officially diagnosed). I started giving her ginger and the problem is gone since - see link below for details where I detail how I prepare and give it to her daily once. The ginger takes care of nausea and also helps with motility of food through the small intestine and emptying into the larger intestine. There is a research paper that highlights the role of ginger in enabling movement of digested food and alleviating gastroparesis. Note that you may want to do more research. Also, ginger is a blood thinner, just to let you know.

healthunlocked.com/parkinso...

Thank you for providing such a comprehensive explanation, recipes, etc. It is nice to know there are plenty of possible solutions/help with this condition.

Hi I was diagnosed with PD in March 2014, and then in 2017 I started getting stomach pain. I ended up in hospital and diagnosed with Gastroparesis, I was put on medication called domperidone. After another 12 months of pain and tests and was re-diagnosed with Crohn’s disease. Then took off Domperidone . I don’t think Domperidone is available in America due to the possible serious side effects.

Hidden
Hidden
in reply to Popple64

Some folks with Crohn's have responded fairly well to Low Dose Naltrexone (LDN) which has a very good safety profile and is a relatively inexpensive prescription med that was repurposed from a higher dose version. LDN is used for quite a few health issues and is only used once a day, usually before bedtime.

cochranelibrary.com/cdsr/do...

Art

Has anyone been prescribed Mestinon for the vomiting and constipation?

I have gastroparesis also. I have self-diagnosed myself. I supplement my solid food with nutritional drinks. I drink Boost and Ensure. They are available in different calories. I have the Boost "Very High Calorie" one that has 530 calories. I also have Ensure Plus in "Immune Support." I had been blaming my nausea on the Parkinson's medicine (Senemet). I guess you know to avoid high fiber foods? I wasted my time thinking I have a hernia when I'm sure it's a "Bezoar." Three doctors have seen the protrusion and diagnosed nothing. I did have a cancer scan that showed no growths in my body. Good luck with your management of the distressing digestive problem.

lauralizzie
lauralizzie
in reply to sleezy

Thank you and good luck to you too

I haven't been diagnosed with gastroparesis, but then again, I haven't complained to my doctor about my intestinal issues. I'm trying to affect those myself with what and how I eat. The things that have helped me:

1) Any amount of food eaten at the same time as taking the C/L tablet or any amount of protein eaten within a few hours of taking the tablet will cause the medication to be less effective for me. When I'm feeling slight nausea and it's time to take the C/L, I eat just 2 crackers with a little additional salt on them. Salt helps my nausea for some reason. And, I eat them very slowly and concentrate on the experience of them in my mouth. (Maybe this just takes my mind off my stomach.) (I eat Almond Nut-Thins, made with rice flour and almond meal. They're tasty. Manufacturer is Blue Diamond, and I buy them in the U.S.)

2) Eating my meals relaxed and chewing my food very, very well makes my digestion much more comfortable.

3) I try to remember to eat a small piece of fresh ginger root before each meal. This also seems to make my digestion a little more comfortable. I slice off a piece about 1/8 to 1/4 inch from the fresh root (which I keep wrapped and stored in the refrigerator), peel it, and sprinkle it with a little salt. If you've never tried fresh ginger root, be aware that some of it can be very strong, even creating a burning sensation in the mouth and throat. Eat it slowly and mindfully, and have ready a glass of water to sip from if the sensations are too intense. The water will wash it out of your mouth quickly. However, I think that for anyone who has trouble controlling their swallowing reflex, raw, fresh ginger root could be a very bad idea.

4) Another helpful thing I do is eat something with a bitter taste just before I eat a protein meal. See the article "Why you should be eating more bitter foods" nbcnews.com/better/health/w... . I think the benefit occurs with having the bitter taste in your mouth and on your taste buds. My current favorite is endive. (I stay away from tinctures called "bitters". These are alcohol based tinctures of a combination of several different bitter herbs. Each time I've tried taking them, I've felt a slight pain in my upper right side. They are probably doing what they're intended to do - stimulate bile, hydrochloric acid, and digestive enzymes, but it was a little too intense for me. So, I now stick with the fresh bitter foods.)

5) Gentle, abdominal massage helps.

All of the above probably help move things through the stomach a little faster.

you can try yoga and pranayama, that can help you

Lauralizzie, i too have this problem and i think nearly all pwp experience episodes of gastroparesis ( paralysis of the stomach.) at some time.

i have found keeping my bowels active is essential to my well being. Drinking plenty of water and taking whatever helps you stop being constipated. If im desparate I take a domperidone which gets my gut moving again. High fat meals bring an episode on for me.

Im starting to loose weight too and plan to take ensure or a similar supplement.

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