Balancing diabetes with PD: Between a rock... - Cure Parkinson's

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Balancing diabetes with PD

JeanieBeanie profile image
61 Replies

Between a rock and a hard place. My husband is 26 years into PD. He is now also pre diabetic. How can you balance what foods to eat. Too many carbs turn into sugar and too much protein stops PD meds working properly. He tried Metformin but felt it was affecting his PD. The more carbs he has the more he eats. If I make him fresh pasta with prawns for dinner an hour later he is at the Tuc crackers. Yesterday we tried the protein route. 2 scrambled duck eggs with a bit of ham for breakfast then around lunch time a bag of pork scratchings, for dinner steak with garlic and cheese mushrooms and another duck egg. The steak was not very good so half was left so later he had half a dozen Cheddars with some Boursin. I knew he would have trouble in the night. I do think the sinemet makes him eat a bit compulsively and he seems to have got worse through lockdown yet he hasnt put any weight on. I know on this very informative forum that there are PD patients dealing with diabetes also. I value your advice.

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JeanieBeanie
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61 Replies

Dont feel like ive got grest dietary advice, but re meds:

Can he get exenatide? It's in phase3 trials for slowing PD progression and it's used to treat diabetes type 2.

Two birds....

JeanieBeanie profile image
JeanieBeanie in reply to

Ooh. Will def look. Are you in Uk?

Rhyothemis profile image
Rhyothemis in reply to

Exenatide is a GLP-1 receptor agonist. Butyrate is reported to increase GLP-1 production. Butyrate can be generated in the colon from resistant starch (assuming one has the appropriate gut microbes). Butter contains tributyrin which can be converted to butyrate. Butryrate and tributyrin supplements are available for sale.

Walnuts contain myricetin which is also a GLP-1 agonist (though probably not comparable to Exanatide in kinetics or efficacy).

pdpatient profile image
pdpatient in reply to

Chris WF, I can confirm with certainty that Exenatide and Levodopa don't go well together. See my post/response above.

in reply topdpatient

Interesting. How well is that documented (the issue, i understand the theory)?

Some of what I read (from here mdedge.com/internalmedicine... ) suggests the opposite? Do any of the study reports from the phase 2 trial address this issue? Seems like a bit of a problem for exenatide as a PD therapy?

"However, it’s also possible that exenatide somehow altered the pharmacokinetics of levodopa and other dopaminergic drugs, making them more effective, Dr. Athauda and his associates said."

Patrickk profile image
Patrickk in reply to

I was on Bydureon (once weekly shot of Exenatide) for five years before I went into remission from Type 2 Diabetes. Incidentally lost 50 pounds in the first 50 weeks without effort (still needed to go another 50 :-]). Couple of years after Diabetes I was diagnosed with PD. Got all excited reading how Bydureon had come through mice, open label and double blind trials stopping PD progression in its tracks. Disappointed to find out had to wait for success in third stage trials before I could get it.

Joked with my doctor: maybe I can gain a pound a week until I get Diabetes back and then get the Bydureon (kidding).

scienceofparkinsons.com/201...

This article says up to two-thirds of people with PD "may be insulin resistant, despite having normal blood sugar ... people with PD may want to have a more sensitive insulin test conducted, such as the HOMA-IR, to see if they have undiagnosed insulin resistance."

parkinson.org/blog/science-...

I am going to try to get this insulin resistance test -- and if it turns up positive, try go get back on Bydureon which is an indicated treatment.

JeanieBeanie profile image
JeanieBeanie in reply toPatrickk

Hi. Earlier in the post someone says it does not go well with c/l. My husband did lose weight but unfortunately diabetes runs in his family

Patrickk profile image
Patrickk in reply toJeanieBeanie

I've been looking around the web for anything about Bydureon inhibiting Levodopa from being absorbed -- just starting. Then it occurred to me: Since the trials were by definition conducted on PD patients -- everybody was on Levodapa therapy. That seems to put the clamp on that -- had me worried -- will keep looking around.

Hi JeanieBeanie:

I don't have diabetes but have had blood sugar in the pre-diabetes range on several occasions, so I try to watch the carbs I eat (I have my yearly physical next month, and I am worried what my A1C will be!)...

I eat very little protein before my last dose of c/l for the day.

For breakfast and lunch I have been eating low glycemic foods like blueberries, strawberries, watermelon, cantalope, apples, popcorn, Breyer's vanilla low carb ice cream (I love this stuff!), garden salads with some kind of vinaigrette dressing, stir fried vegetables and mushrooms, ...

Lately, I have been living on the wild side, and having a small (1 cup) bowl of Honey Bunches of Oats with Almonds for breakfast...

For supper I try to stick to low glycemic foods, but eat as much protein as I can...

Cons10s profile image
Cons10s

I suspect a food addiction problem here. Try this and lose weight eating more food then you can imagine, many have succeeded reversing their diabetes.

brightlineeating.com

Rhyothemis profile image
Rhyothemis

Just an FYI - protein can be turned into sugar, too, via gluconeogenesis. The old school ketogenic diet for epilepsy is only 10% of calories from protein. I see a lot of body builders and fitness gurus 'go keto' with much higher percentages of protein in their diet - I suspect the weight training they do lets them eat more protein without gluconeogenesis pushing them out of ketosis.

What does not get much press coverage for some reason is the role of potassium in blood sugar control:

ncbi.nlm.nih.gov/pmc/articl...

It's really the ratio of sodium / potassium intake that is at issue and most people don't want to cut back on salt. Increasing consumption of high potassium foods like leafy greens should help some. Potassium supplementation from potassium bicarb might be a solution, but in general doctors warn against potassium supplementation as it can cause heart rhythm problems in some people and can interfere with some Rx medications & should not be done without medical supervision. I think it would be great if technically feasible to add a potassium reading capability to glucose monitors & perhaps even provide a suggested dose of potassium supplement to the user via an app.

In any case, have you/your husband considered a continuous glucose monitor? There's a lot of inter-individual variability in response to foods:

youtu.be/2iKHMyWzclM?t=1248

JeanieBeanie profile image
JeanieBeanie in reply toRhyothemis

I am on the Keto diet and you have to take potassium. It makes sense. Thank you.

JeanieBeanie profile image
JeanieBeanie in reply toJeanieBeanie

I need to thank you Ryothemis. He wont go without the potassium now. It has made a huge difference along with the fasting. He says he feels more confident and his blood sugar has gone down. We are experimenting with what foods affect him as the video mentioned about gut bio.

pdpatient profile image
pdpatient

Hi Jeanie, I am glad to help you. Diagnosed with Diabetes in 1999 and with Parkinson's in 2012.

I am a food addict as well and Vegetarian to boot😇 But I have a craving for sweets like there is no tomorrow. I have discovered that the only way to manage the two afflictions ( I refuse to call them diseases) is through Intermittent fasting or IF. Sometimes, I also do a full day fast. Thanks to the magic of IF, I can indulge in food luxuries like ice cream and still keep my A1C below 7 and closer to 6.

I am 55. At this age, it's difficult to manage both afflictions with most of your friends and family seemingly healthier but not so with "invisible" diseases like heart conditions or other "easy to hide" conditions. Fasting allows Parkinson's Medication's to work better than with food and helps diabetes as well.

My wife says with approval:. "Rytary is the best thing that has happened to us because diabetes is under control" 🤣. I can't get Rytary to work fully with food in my stomach. However, lately a new medication called Istradefylline or Nourianz has made most of my problems if not all of them and I find myself slipping. Not very good for me diabetes wise, but great Parkinson's wise.

Metformin will not interfere with the Parkinson's Medication's, especially if you eat meat. Reason is that B12 levels go down for vegetarians who have trouble getting enough of B12. For your husband no problem and Metformin protects the heart.

What does interfere is any of the non-insulin injections like Exenatide (Bydureon), Trulicity, Ozempic or Victoza. They work using the mechanism of delayed gastric emptying which wreaks havoc with the absorption of Levodopa. All other meds should be ok. Insulin is the safest and that's what I have along with Metformin.

I am surprised that it took so long for your husband to get diabetes. Maybe, he was fit and not overweight earlier?

God bless you both. As always, my prayers are with you and your family and everyone else on this forum.

JeanieBeanie profile image
JeanieBeanie in reply topdpatient

Bless you pdpatient. Intermittent fasting is also recommended on keto diet which I do. What time of day do you recommend the intermittent fasting?

pdpatient profile image
pdpatient in reply toJeanieBeanie

Hi Jeannie, I fast the entire day and eat my first meal at 6 pm and stop eating at 12 pm.

I revised my response to you. Please read the additional information.

JeanieBeanie profile image
JeanieBeanie in reply topdpatient

Wow. How often do you do that?

ParlePark profile image
ParlePark in reply toJeanieBeanie

I eat between 8am and 3-4 pm. Meds 7-12-5. So hard to balance protein intake (low carb) because I’m borderline pre diabetic!

pdpatient profile image
pdpatient in reply toJeanieBeanie

Hi Jeanie, about 3 times a week

Gioc profile image
Gioc in reply topdpatient

Well done👏

ddmagee1 profile image
ddmagee1 in reply topdpatient

I have used Intermittent fasting, along with keeping track, of daily calories, via Lose App. Both of these methods have been very helpful to me, in controlling sugar intake, and helping me to not put on more excess weight. I had lost 40 pounds, about 5 years ago, and had gained about 25 back, when I stopped fasting and watching my calories intake, for about 6 months last year. I am now back in my routine, and have lost 5 pounds. With the lockdown, and staying home rules, because of COVID-19, I am not getting as much exercise, primarily walking, as much as I used to. It’s challenging, at this time, to be able to keep to a great routine of exercise, plus good nutritional habits, and lose weight. I follow the Mediterranean Diet, and sometimes it’s been difficult to get the best ingredients at the grocery store. These are uncertain times, and here, in the USA, the COVID-19 pandemic is, seemingly, uncontrolled, so I think we are going to have the coronavirus danger, around, for a long time.

BUSHPILOTS profile image
BUSHPILOTS in reply topdpatient

I too had gastroparesis when I started exenatide. I increased my liquid intake by juicing vegetables and fruit and also ate less large meals instead just eating a little more often. I also added a strong probiotic. The combination has eliminated my delayed emptying. For the diabetes I got off of virtually all processed foods and especially sugar and now eat more vegetables but still a small portion of meat. I don't take c/l only a light dose of mucana so I don't now for sure if I would have a problem with a heavier levodopa dose but I suspect not. I could tell no doubt when my gut started working.

pdpatient profile image
pdpatient in reply toBUSHPILOTS

Hi Bushpilots, delayed gastric emptying that afflicts diabetics or caused by drugs such as Exenatide, is not the same manifestation as gastroparesis which can be a prior or separate diagnosis.

They appear to be two different things (as I understand it) although the problem they create are the same and they have the same name! Sounds confusing, but one is caused by the disease or by medication such as Exenatide and the other (gastroparesis) is a diagnosis possibly before diabetes like after a surgery. Seems like how one gets gastroparesis might make the difference.

Bottom line is that you lucked out and I didn't 😇

However, to your point, here's the research article that sheds more light on the subject.

pubmed.ncbi.nlm.nih.gov/306...

BUSHPILOTS profile image
BUSHPILOTS in reply topdpatient

Interesting. I have seen the terms used interchangeably but the article makes a distinction i think for clarity. Thank you for posting that. If anybody else is feeling bloated and delayed processing is going on after starting exenatide, you might try a few things before giving up.

Patrickk profile image
Patrickk in reply topdpatient

Your Levodopa absorption idea must be mistaken -- by definition everybody in the Bydureon Parkinson's trials must be on Levodopa; all PD patients.

pdpatient profile image
pdpatient in reply toPatrickk

Hi Patrickk. I have battled with this for over a year and a half and without fail, food, any food, results in markedly reduced absorption. The only remedy that has worked out for me (to my wife's delight) is IF (intermittent fasting). I have no self control over food and total abstinence is the only way to overcome weak will power. Sounds like a really nice paradox, doesn't it?

Yes indeed, I too have struggled with the same question. I thought I had a leg up because, as a PwP (person with Parkinson's), I could as ChrisWF pointed out, kill two problems with one magic injection and I would be so grateful and happy to jump ahead of the line within having to wait for trial results😇. Alas, it was not to be.

My MDS doctor blames the combination of diabetes and Parkinson's for my inability to absorb Levodopa efficiently with food because he says that diabetes causes delayed gastric emptying (not gastroparesis)

So, I mentioned it to my diabetes doctor (endocrinologist) that I was told this by my MDS. She immediately speculated whether the delayed gastric emptying is caused by Bydureon which was obtained through an insurance appeal. She wouldn't endorse the claim by MDS about diabetes being the cause of my absorption issues. However, she did say that the primary mechanism by which this class of drugs work is by delayed gastric emptying.

I convinced her to let me stop Exenatide for 6 weeks in order to test the theory. Lo and behold, my Rytary absorption returned back to pre Bydureon days. All i had to do in order to get maximum absorption was to just fast easy with 16/8 IF. BTW, my MDS declined to opine on whether it was a good idea or not to stop Bydureon as it wasn't his area of speciality.

Unfortunately I have consistently observed that being diabetic puts one at a huge disadvantage when it comes to any doubt about something medically not working for any reason. Everything gets blamed on diabetes because it is used as a catch-all for any reason and to explain anything that medical science cannot explain.

So, all I can do at the end of the day as a layman is to consistently do what works best for me and in this particular case, I benefit from huge weightloss and better A1C numbers.

Allypally49 profile image
Allypally49 in reply topdpatient

Have a look at helicobacter pylori ( HP) and parkinsons disease It can increase the absorption of co-careldopa by 25-50,% when eradicated.

Zella23 profile image
Zella23

Funnily enough my husband showed pre diabetes Levels in his blood before diagnosed with PD. Since diagnosis 5 years ago he has switched to a more healthy diet has lost weight and levels have come down.

Mostly we try and stick to Mediterranean type diet and do have whole grain carbs which are more satisfying and stay longer in the stomach and are considered better for digestion.

Instead of changing our diet suddenly, we have gradually incorporated organic porridge, whole meal bread, whole grain rice and pasta, oatcakes instead of biscuits more seeds nuts lots of fresh fruits and vegetables. Still eat fish and meat.

Before the heatwave we made lots of soup with lentils and vegetables which are great fillers before meals. I often make composite salads, which were never favourite but are becoming more so.

My husband is a cheese lover too but tries to limit it.

We still have a glass of wine or beer and still manage meals out and are not 😇!

JeanieBeanie profile image
JeanieBeanie in reply toZella23

Neither are we Zella. I am not a bad cook and my husband likes his food 😜

chartist profile image
chartist

JeanieBeanie,

There are many studies that show that probiotics and synbiotics can improve the type 2 diabetic condition in multiple ways. The following two meta analysis confirm that probiotics and synbiotics are effective in reducing diabetes type 2 symptoms. The meta analysis is a better representation than individual studies, of which there are many :

pubmed.ncbi.nlm.nih.gov/327...

ncbi.nlm.nih.gov/pmc/articl...

Art

JeanieBeanie profile image
JeanieBeanie in reply tochartist

Thanks. He has been taking Bio-kult Mind since March.

parkie13 profile image
parkie13 in reply toJeanieBeanie

Hi, did he notice any positive results? Is he taking one or two per day?

JeanieBeanie profile image
JeanieBeanie in reply toparkie13

2 per day. No. Not really but we had two packets so he has carried on taking them. We do believe in probiotics though. He was taking a cheaper one before that. I know other people on here found the same with Bio-kult.

parkie13 profile image
parkie13 in reply toJeanieBeanie

Yes, I had two boxes and never noticed anything thanks

2bats profile image
2bats

Keto should address the T2D and work well with the PD. Http://dietdoctor.com is probably the best keto site and - as you’re obviously a good cook - has hundreds of great recipes. My way of dealing with sugar and carbs is to classify them mentally as Toxic Waste!!!

Good Luck! Best regards, Phil 2bats

AaronS profile image
AaronS

I know this sounds boring but if a human hand has touched it , produced it or assisted in the manufacturing process then potentially it's off limits.

Sorry for the strictness but it def answers your questions

JeanieBeanie profile image
JeanieBeanie in reply toAaronS

I agree. I cook everything fresh. He has been spoilt.

LAJ12345 profile image
LAJ12345

Try to decrease the refined carbs and protein and increase the Green leafy vegetables and whole grains. Cut out all sugar Except for a few pieces of fruit, and gluten. Your protein rich low carb day sounded way to rich. Try having meat Or fish only every few days and in between days have beans or lentils as your protein instead.

JeanieBeanie profile image
JeanieBeanie

The good news everyone is he really tried yesterday and his levels are slightly down. Also took potassium Ryothemis.

KBGfightsback profile image
KBGfightsback

Have you read any of Dr. Mary Newport's books or watched her youtube videos on Coconut oil? She addresses using coconut oil and/or MCT oil offering ketones that the cells can absorb and use as an alternative fuel instead of glucose. Small studies show that folks with PD and AD can be insulin resistant. Insulin is needed for glucose to be absorbed into the cells and used for fuel. Small studies have also shown that folks with Alzheimer's and PD dump a lot of B1 (thiamine hcl) which is needed to metabolize excess glucose via the PPP. Excess glucose with no where to go can cause a process which results in cell death. B1 supplementation, Keto based diet plus coconut oil/MCT oil is reported to really help.

JeanieBeanie profile image
JeanieBeanie in reply toKBGfightsback

I have both of those oils. I am on keto diet so I will start to cook with at least the coconut oil.( Maybe sneak the MCT into his drink 😉). Actually it has no taste and I take mine by spoon.

JeanieBeanie profile image
JeanieBeanie in reply toKBGfightsback

I have both. Going to try this. Thanks.

amykp profile image
amykp

I had prediabetes...about ten years ago. I eat keto now, and also intermittent fast, and my blood sugars are completely normal now. But really, they were low before I started fasting.

Keto is not high protein--it is low to moderate protein. Very low carbs,and that includes "whole" grains and fruit. (Except berries!)

What keto is is high FAT. That is what you can eat with abandon. Someone else said to check dietdoctor online. YES! That's a great site.

There is no reason a keto diet should get in the way of C/L...anymore than any diet.

JeanieBeanie profile image
JeanieBeanie in reply toamykp

Thank you. I am on keto diet now . I am afraid he loves his fresh pasta. He is trying though.

LAJ12345 profile image
LAJ12345 in reply toJeanieBeanie

Well his pasta is probably his problem by the sound of it. He might have to limit it to a treat occasionally. Maybe as a reward after a very large green leafy salad😊

JeanieBeanie profile image
JeanieBeanie in reply toLAJ12345

😁

amykp profile image
amykp

I love(d) pasta too. It's probably what I miss the most--more than cake.

There are a few pasta substitutes I've found. None of them are perfect, but they are passible if drowned in sauce (and if you cook homemade I bet your sauces are delicious!)

Anyway, you can find them on amazon: palmini, which is made of heart of palm, or zeroodles, made of konjak plus oat fiber. There are others, but I think these are the most affordable. (Or the least outrageously priced)

Maybe other keto dieters can recommend more?

LAJ12345 profile image
LAJ12345 in reply toamykp

My kids and husband don’t mind this one. It’s not the same but not too bad as a substitute.ceres.co.nz/products/grocer...

But of course these substitutes are still carbs if that is the problem. Possibly his problem might be gluten however.

JeanieBeanie profile image
JeanieBeanie

Tried the konjac once before and awful. He has fasted today like pdpatient suggested. He did very well. I think he is going to moderate. I also think lockdown has not been good for him.

amykp profile image
amykp in reply toJeanieBeanie

No, these oat fiber ones are NOTHING like the fishy konjac you can get in the grocery, or an asian market. I think you are referring to those? Yuck.

The zeroodles are much better. Though actually I prefer the rice shaped ones.

LAJ12345 profile image
LAJ12345

Rereading your post I think his snacking on crackers etc is not ideal either. My husband did a lot of that too. Do you do the shopping? Just not buying anything he is not allowed to eat might help. Clear out all the processed food in the cupboards, And all sugar, and have a no junk policy with a clear stake in the ground.

Buy some organic salt free nuts he can snack on after a meal if still hungry. But not within an hour or so of his medication of course. Also have carrot sticks and celery sticks available for crunching on at any time. And 1 square of 90% dark chocolate per day. Don’t leave fruit in sight in a fruit bowl either as it becomes the next target, especially bananas. They are also a treat to have once a day.

I found if I let him have a treat occasionally he would decide it’s safe so would be into it any time I wasn’t looking. A total ban is easier to police.

amykp profile image
amykp in reply toLAJ12345

Just a note: when you eating keto you need extra salt--more than folks on carb diets. So, salted nuts are probably a better idea.

I keep blackberries and raspberries in the house--actually they are lower carb/sugar than carrots. Also,there are keto chocolate chips...which aren't as delicious as the real thing, but they aren't terrible either. And plenty of recipes for baking keto treats.

amykp profile image
amykp in reply toLAJ12345

And, I agree, black and white rules (a total ban) are not just easier to police, it is easier to stick to. imo!

LAJ12345 profile image
LAJ12345 in reply toamykp

Yes, sure is;)

JeanieBeanie profile image
JeanieBeanie in reply toLAJ12345

Yes. I agree. To be honest he gave up all sweet things 2 months ago but we didnt realise how bad carbs are. I wont be buying him treats from now on. I have started to look on the packets for everything.

John_morris71 profile image
John_morris71

If you can try Intermittent fasting, it is a good way to control/reduce sugar level. Combine that with eating lot of vegetables (for fiber) and that would give your efforts a boost. My mother who is 77 is now into Intermittent fasting ( after dinner at 7.30 pm her next food intake is at 12.30pm - next day; Only water between these hours.

Davesg profile image
Davesg

Hi JeaniBeanie, have you asked him to try intermittent diet? I had high blood glucose level too and currently on intermittent diet/fasting; it controls my HBA1C very well within normal range but not my fasting blood glucose level (but at least it is much lower than what I had previously). I go on a 16 hours fasting from 8pm to the following day 12 noon and eat only between 12 noon to 8pm. I have been off diabetic medicine for more than 3 years. Exercise is also required to reduce blood glucose level

JeanieBeanie profile image
JeanieBeanie in reply toDavesg

I think this is the answer.

JeanieBeanie profile image
JeanieBeanie in reply toDavesg

Thought you might like to know this seems to be working.

OLS3010 profile image
OLS3010

Try a Whole Foods plant based diet with no sugar and minimal oil. Lots of veggies (esp green), beans and some fruit. Avoid processed foods. Can do keto version and add intermittent fasting. Get away from the white breads and pastas. Do only whole grains. See work of Dr John McDougall, Dr Neal Bernard, and Mastering Diabetes.

Allypally49 profile image
Allypally49

Firstly Have you claimed the full attendance allowance.

Secondly pre diabetes.

Like you I am a carer for WWP,

although she not pre diabetes, I after seeing my stomach side ways ( not that big) knew the visceral far was dangerous.

Pre diabetes is caused by insulin resistance so he will need to cut out as much carbs as possible.

Cut down and where possible, cut out all sugars, including fructose.

Also bread ( go for 9g carb per slice)

Pasta, rice( use cauliflower rice) , chips, potatoes, pizza. Vegetables that grow in the ground.

He can eat, fish, meat , chicken, cheese,

Cream, vegetables that grow above ground.

Dark chocolate 70% or more

Yogurt( not fat free, as the use sugar to make up for lack of taste), Blueberries

Limit the fruit with high fructose and/ or carbs.

Lots if recipes on youtunbe under low carb ( don't go for keeto as it's a diet hard to keep too)

You will see they use almond flour instead of flour. I make my own , Pizza, garlic bread and desserts using it.

I went from 14st 5lbs to 12 St 7 but it took a year but its easy to stick to and you can have a busting the carb treat, every so often.

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