Food


#1

I have experimented with different foods to try and control my good and bad days . My bad days do seem to coincide with my protein intake early in the day . What I am trying now is to achieve a balance between certain foods and my  meds .

My latest list of  ' to try '  things are .......

Broad Beans , Evening Primrose , Ginkgo Biloba (  if I can get some ) , Passion Flower, Grape Seed , and St  Johns Wort .

I am sure that I can control symptoms to  a certain extent by limiting some things and trying others .

Any comments or anyone had experience of these foods .? It can get confusing when you start looking into antioxidants , niacin, vitamins , folic acid , free radicals , lecithin , etc .

Should be ok with turkey and Christmas pudding , so Merry Christmas to all  , 

Cheers ,  Pete

 

 

 

 

 

 


#2

Hi Pete

Good luck with your dietary experiments.

I would add a word of caution....you can't take St John's Wort with Azilect as it causes a damaging interaction.

Also, protein in the stomach stops Levadopa working properly so time your Turkey to leave at least an hour either side of your meds.

Have a lovely Xmas.

GG


#3

Thanks GG ,

I did not know about St John's Wort , but having looked into it more I think it is one to avoid anyway . 

I have been trying to establish a pattern of what can influence my meds ........why do they work on some days and not others  I ask ?  Well it seems like it is not just food , but there are so many variables that influence my meds effectiveness .

I am always at my worse in my own home .  I accept that if I am out in the open then I can walk across a field , but the minute I get to my front door the battle starts again .

Stairs and steps are not a problem , but an open door is , why ?  Crowded shops are a nightmare as well .

The only thing that is predictable so far is that Parkinson's is unpredictable . 

Saw my Neuro the other day , and on his advice it looks like I will be starting on the pump and a change in tabs in the new year . He says I have had it long enough now that not much more can be done with increasing my present tabs dosage .

I am getting weary of the battle but will not give up ..

Cheers ,  Pete

 

 

 

 


#4

Name came up wrong soz ,.


#5

I have had parkinsons a year , only just started 1 mg patches, leviodopa upset my stomachi

i try natural things too. Have you heard of coenzyme q10? Look on google.

christmas din did not upset me too much, I am getting acid refkux, take rennies ! Have pains sometimes like hunger pains m have a bread stick..! Researching alkaline diet also maybe some vegetarian if I persusde hubby., !

good luck, we keep fighting don't give up! 

Brenda 


#6

I have a big problem with doors and crowded shops .

steps are great! 

Had a fall, damaged hanstring , so just started hobbling again., ! 

Have good and bad days , depends how I sleep too,

brenda 


#7

Brenda, you are right stairs/steps are easy, but inclines/slopes an effort. I agree with uuyou that a good night's sleep , i.e. being well rested, makes a lot of difference.

Co-enzyme Q10for PD  is old hat ,it has been researched, but in the end no benefit was  found (except Placebo effect and PD is very susceptible to the P effect.). Whether the high levels tried are safe is not known. Do not be fooled by "natural things". Water hemlock is natural...... 

Pete, I sometimes think  I am a fraud, when I am out (distracted?) and performing  like someone who is perfectly normal, but at home I struggle from one piece of furniture  to another to get around. What about closed doors, Pete? Or crossing an open space with no support.? My brain tells me :"this is going to be difficult, you can not do it, etc" and I start to shake.....Distraction sometimes helps.

Kate


#8

Kate - I have very similar problems with movement - outdoors I can power walk with the dog no problem, and can still cycle (thank goodness), but as soon as I am indoors really struggle around. Cooking is a huge challenge as I get marooned in the middle of the kitchen saucepan or kettle in hand. Also in shops, especially when people walk across in front of me unexpectedly, I freeze. Doors with strong closers are v difficult, and not helped when somebody holds it open for me - weird or what!!  The only tactics I manage to usefully employ (sometimes) are counting as I walk around or telling myself to take "big steps". No good when I am with somebody else though as I have to concentrate 100% on walking smoothly. I find this is incredibly tiring and frustrating  - I have plenty of energy but so much of it is wasted.

 Brenda - I too have fallen badly, broke collar bone last Feb, and hurt my back in June when I fell backwards down the stairs when i was suppose to be going up!!  Have to be so careful when turning round too, as seem to have lost the ability to adjust feet quickly.

Hey ho, no skating for me on icy pavements this winter!

Keep upright everybody!


#9

Sorry for the late reply , not been online much over festive season .

I have not found any difference between my sleep pattern and symptoms , same if I have a few beers . I can have a bad nights sleep and go for a few beers and walk ok some days . Then the next day I can be struggling after a few beers .

That is when I get advice like ........ you should not drink .......etc .

Yes Kate , agree that with an open space like a field I can walk across,  but in the house or a shop it does not matter when either the door is open or closed , I can struggle regardless . That is what confuses others  ( and it used to confuse me in the early days ) when they see me 'normal' one minute , then the next minute stuck and unable to move .

Distraction is difficult to control , I start to think about when my next does of meds are due and my legs remind me . That makes me worse .

I have a running / walking machine and when I am struggling I go on that , I can walk ok . Stairs no problem , tried counting and taking big steps but only works for me sometimes . I have had numerous falls but apart from bruising nothing serious so far .

Strange , ....... is all I can say .

Good saying Supa , Keep upright everybody ......

Pete

 

 

 

 

 

 


#10

How did the wrong name come up? Lol


#11

Hi,

i find high protein foods or anything stodgy effect me meds and their effect.  In the mornings in particular, I avoid milk or yogurt, also porridge I find has an effect.  

I think we all have the good and bad times.  I've learned now that if one dose of Sinemet plus doesn't kick in, it doesn't mean the next one doesn't  so I try and be patient with myself.  It's all trial and error I think.

ali

x


#12

     Ali p

           Is it the PD ?.....Is it the side effects of the meds ?...Is it when you take your meds ?.....Is it what you eat ? .....Is it when you eat ?.......          Who knows, does anyone ? I just wish someone new. Because everyone is so different it is trial and error or maybe lucy dip !!!! Fingers crossed we find some answers and a cure.                                                                                

               Optomistic    Billywhizz


#13

We had a long conversation with our neuro this week.

He explained that Levadopa is only absorbed in the small intestine which is very short. It is not absorbed from the stomach or the large bowel.

How long the Levadopa takes to pass through this short length of tubing is affected by many things...how full or empty the stomach is, what food is in there and how quickly it is being digested and moved along, how quickly the small intestine is moving the digested food along....

This can be delayed by constipation, etc...and varies from day to day and meal to meal....

Only a tiny amount of the Levadopa taken in finally reaches the brain.

PWP need to understand the variable working of their own gut from day to day.

That is why the new ways of delivery are such good news as scientists try to overcome this problem.

There are many in the pipeline and I think some will be available in the next year or so.

Chin up!

GG


#14

Billywhizz, I don't know!  I wish I did.

GG, yes, looks like good things are on the horizon.....things can only get better.

ali

x


#15

I think about what  foods help me  and what slows down my meds almost every day . I have thought about my past when looking for causes of my ideopathic PD .

Possible causes ..........I did a lot of welding , I worked on a farm as a teenager , I watched a small plane spraying crops in a field and got covered in the chemical back in the early 60s . So I  had a large  dose of pesticides ,welding fumes ,and farm chemicals in my  younger days . All have been identified as possible causes .  DDT was being used then !

I resisted any meds when diagnosed and managed for several  years before I was so bad I had to start . I now take a concoction of tablets six times a day .

The  only thing that I can now see to influence and control my  symptoms is my food intake along with the meds.  

It  is a complicated illness , we are all different , it is good to share ideas and problems . We may find a pattern somewhere , who knows .

Now time for my protien free beakfast ..........

Cheers , Pete

 

 

 

 

 


#16

Hi Pete

So how exactly did you post under your own name and that of Cluelessfisher?


#17

Simple ........   I registered twice years ago and forgot about one . Used same password and auto login .........

A mistake , I blame the tablets , guilty as charged  , cluelessfisher on ebay , singingpete on here , .......so as you can see I am clueless , I sing , and I am a fisherman .  

If it is important delete one please mods ............any more discussions on my mistake and we should open a seperate thread .

now back to food .........sprouts for breakfast today with port wine !

 


#18

All makes sense now.

Enjoy the sprouts!


#19

Hi singingpete

I've closed the Cluelessfisher account and updated your name. Do let me know if there are any problems. 

Best regards

Ezinda