Diet and Parkinson's


#1

Hi everyone!

We all know how important a healthy diet is and this can be particularly important in Parkinson’s.

I am currently updating our booklet, Diet and Parkinson’s, and I am looking for people to share their experiences of diet challenges (and triumphs!). So if you are happy to be quoted in the booklet, let me know about your experiences of:


• maintaining a healthy weight
• constipation and bowel problems
• eating and swallowing difficulties
• diet and your medication
• using vitamin and mineral supplements
• using adapted utensils for eating and drinking

You can post below or send me a direct message.

Thanks,

Rhianna


#2

Hi

I am struggling to maintain a healthy weight because of the problem with Protein.

It reduces the effects of the drugs, but I find it difficult to plan meals so eat less. 

A blood test has  revealed a drop in vitamin D and now prescribed a short course by my doctor.

How can I improve my diet with this conflict ?


#3

I know how hard this is! My husband takes Sinemet every 2hours so it is impossible to leave an hour either side of the tablets!

We have found that different types of protein stop the meds from working in different ways.

Eggs seem to interfere less and vegetarian -type products such as Quorn.  They make sausages and mince.

If going out we eat a meal before setting off with no protein..eg. veg soup, pasta with a vegetable sauce, a sliced tomato and lettuce sandwich and a banana..baked potato with butter and a mixed salad...

it's not very exciting but it does mean the meds work.

I can only recommend experimenting and see what works for you.

Good luck!

GG

 

 


#4

Thanks GG

I was thinking along the lines of going vegetarian, but I will try to find which proteins affect me.

Life is so trying sometimes!


#5

Hi


Thanks for your responses.

It must be very difficult to balance eating enough when you have other considerations, such as protein interacting with your medication. But it sounds like there are alternatives that you can try as goldengirl suggests. Iris – I hope you find a diet that works for you!

goldengirl – would we be able to put together a quote from you on meal planning in some way for the booklet? I think knowing that there might be alternative protein sources and solutions for meals when you’re going out is something that readers might find really helpful.

All the best,
Rhianna


#6

Diet diet diet, i hate that word, i wish  dietitians could help pwp. I am a carer for my wife who has PD and in  about the 3 years she has had PD no one has suggested she sees a dietitian !!!!!!! Now if it is that important why isn't more being done about it (if the drugs don't work) Sorry about the rant but i am head cook and bottle washer in our house.... HELP.

                                so diet is really that important.....Billy


#7

Feel free, Rhianna!

I am not a very good cook but do recommend experimenting.

If we are staying in we eat whatever we fancy and put up with the shuffling!

If we are eating out with friends or family we use the Dispersible Madopar before and after eating, in addition to the usual Sinemet regime,  and try and choose the least protein option...eg not a big steak!

If we are going out after breakfast it is cereal and/or toast and if after lunch...you have some examples.

Desserts are easy...yoghurt, fruit, crumbles....

I do look at vegetarian books now and again and get ideas for various veg. pasta sauces for example..

If anyone wants to share a recipe or two I would be happy to try them out!

Bon Appetit !

GG

 


#8

                    Rhianna   if the protein thing is so important and i am not saying its not why is it never mentioned by a Consultant, Parkinsons nurse or your GP. ?


#9

Most articles on diet and Parkinsons discuss the effect of protein on absorbtion of Levadopa...including PDUK.

This is from the Michael J Fox site.

SHOULD YOU AVOID ANY FOODS OR SUPPLEMENTS WITH PARKINSON'S DISEASE?
The medication levodopa (Sinemet) is a protein building block so it competes for absorption with other proteins. Eating a very proteinic meal reduces the likelihood of effectively absorbing levodopa, so you may want to leave meat, fish and cheese for dinner and eat more carbohydrates and vegetables during the day. Taking medication on an empty stomach – 30 minutes before or 60 minutes after a meal – allows the drug to reach the small intestine and absorb faster. However, a carbohydrate snack (crackers, toast, oatmeal) with the medication may be necessary to prevent nausea.

We mentioned the problem to our Parkinsons nurse after quite a few bad experiences and she said it was a well-known problem but as Billywhizz points out no-one tells you!

Strange, as it affects such a lot of people.

GG


#10

Thanks for that goldengirl if protein in your diet is such a big problem for pwp then why isn't the nhs doing something about it ? official advice/ dietitian

                             It is or it isn'tlol    Could be a waste of time taking the meds !!!!!


                                       Billy


#11

And what about the pwp who never go on this forum what do they know ?


#12

I agree that there  needs to be  wider publicity and suggestions on how to eat well whilst taking Sinemet.

Also it needs making clear that the problem doesn't arise with dopamine agonists, only Levadopa such as Sinemet.

Hopefully this is what Rhianna is doing in the next mag.

GG


#13

Not on meds yet. Do have problems swallowing and am living on mash potatoes and veg soup. Am also very forgetful, so often miss meals altogether. By the time I think have I eaten today it's nearly time for oh to come home and son from college so we will have eve meal then anyway. I decided that unless get really thin not to worry about it, I happen to like veg soup. Constipation is an issue but not something I let myself worry about either, there is worse problems to deal with. Maybe that is why there is not much advice about diet, the other symptoms are so much more trying and take priority when seeking advice.


#14

Hello billywhizz..as we all know,we dont always get the imformation we expect off specialist, partly i think because pd affects us all differantly...sometimes its best to do your own homework on these things, so you can read it in black and white and understand what suits to you?..


#15

Hi Porthos

I just wonder why you are not taking meds yet?

The problems you experience would probably respond well to medication and you would be stronger on a better diet....

Love

GG


#16

Hi goldengirl

I think I have a confusing medical history making my consultant cautious. His working DX was mild pd with psychological overlap and he wants results of datscan before treatment. I have a history of epilepsy and have had op after brain bleed a few years ago. For a couple of years some of my symptoms, EV the stuck feet refusing to move and the oh no where Ami and how did I get here moments were being blamed on the epilepsy until I was sent to a new specialist who said no way this is something different. In the meantime I had seen all different GP,s at medical centre because you can never get app. With your own. You prob know how it is. They look at your face and trembly hand and jump straight to the anxiety conclusion no matter what you try to say so I have a few years of that on my records. Still am being seen and heard now by someone I feel I have confidence in. Am just scared datscan will be inconclusive and end up at square one again. I try to make soup from scratch with fresh veg, not just living on tinned stuff if that helps ☺


#17

Some things I found helpful to keep my mother eating and drinking and interested in food especially when swallowing became an issue:

  • I  bought her a set of 'cut away' cups which you put in a 2 handled cup-holder base that was really light weight and so she could manage hot and cold drinks, didn't have to tip head back in order to drink
  • The Handsteady cup was also very helpful
  •  
  • when she was on a pureed diet - her nursing home were very inventive and she had lots of foods pureed having selected from the same menu as every one else...eg a tuna sandwich - pureed and then 'reformed' looked odd but tasted good!
  • there are lots of melt in the mouth foods that meant she could still have something to bite into - eg quavers/meringues/Foxes 'party ring' biscuits/some shortbread  - Speech therapists have a list that they use for those with compromised swallow, or after having been intubated.
  • some 'baby' biscuits are melt in the mouth (to support little ones who can't swallow bits...)
  • as an emergency food I did use toddler food jars of food - not perfect but available and the right consistency.
  • chocolate buttons melt in the mouth! Mum got through lots of them!
  • Mum liked soy sauce so that was used to boost flavours and increase interest in the pureed food.

Will stop there as I am not sure that what I have written is what you are looking for! Hope some of it is useful.


#18

Hi all,

I’m sorry to hear that people have experienced a lack of information about diet. If you are having difficulties, mention it to your healthcare professional as they should be able to advise you, even if they have not previously brought up the topic of diet. 

You may also find our booklet ‘Diet and Parkinson’s’ helpful. I am updating it currently, so the new version will be launched in the late spring, but the current version has some helpful information and tips. You can download it at http://www.parkinsons.org.uk/content/diet-and-parkinsons-booklet

Perhaps it might also be helpful to have something on diet in the next issue of The Parkinson? I can chat to Sion, our interim Editor of the magazine, about possibly including something.

Have a good day everyone!
Rhianna


#19

Hi there Rihanna 

been reading over all the posts on diet but I have learned when you take the med  is important , I've been on sinemet for a while now and don't know if it's a fluke but on taking med out with food times has been the best day I've had for walking yet ! As I was taking med with food before thinking it was better for the stomach  I'll see what happens from now on and I'll let you know how I get on 

thanks everyone Ian 


#20

Hi Billywhizz,

 

The problem is that we don't see the medics often enough for proper management.  When you first take a drug they may say take with food to alleviate nausea and then no one tells you any different
.  The general  rule is take meds on an empty stomach because protein competes with levadopa (sinemet or madopar)which is impossible for some due to the frequency with which they take tabs.  i.e. at least half an hour before food and two hours after and I suppose with slow transit developing as the disease progresses (a misnomer if ever there was one) these times would increase.  Many PWP'S find that with time  steak and the like affects them. As g.g. says the less heavy protein foods such as egg or fish don't seem to be as bad.

 I had noticed that I was out of sorts after a Sunday Roast or steak long before dx. and put it down to ageing digestive system.


I sympathise with the head bottle washer doing his level best only to find he has been kept  in the dark about  something.  Have a look at the wealth of publications which can be  downloaded free from this site.