Forum

Course talk on diet

Primary progressive MS
#1

Hi Everyone.

Hope you’re all coming better today, it’s definitely cooler in the Lakes. Well my fifth course session covered Benefits and Diet. I just thought I’d let you know that they’ve done loads of research and the best thing for us is a healthy balanced diet. What we have to be careful of is taking multivitamins or other ones that supplement nutritional requirements as they’re likely to boost enzyme production and immune systems which is detrimental for us. I never considered that.

They have loads of labour saving advice, eg. using frozen and prepared veg which takes less effort, cooking in bulk when we’re up to it and freezing, ready made sauces, the odd ready meal is fine and the use of slow cookers and steamers. I was just surprised at the vitamin thing, obviously Vitamin D is fine as you don’t get that from diet.

I’m so impressed with everything I’ve learnt, so many things I haven’t read anywhere. I’d definitely recommend it to anyone offered one.

Cath xx

#2

That is so interesting Cath. I wonder if that’s why I got skipping heartbeat from magnesium supplement. Someone recently advised me to take olive leaf supplement… but I said NO way Jose! No more supplements for me! I also like that they said a healthy balanced diet. I think it’s easy to feel guilty if we’re not eating the caveman’s diet or whatever!!! I think that’s the same with all these diets for chronic conditions… they just make you feel guilty if you can’t do it… and haven’t we got enough to deal with? A friend of mine has had cancer and someone sent me a link to send to her… about how eating raw food can cure cancer. I didn’t send it. Seemed to me my friend had enough to deal with… and anyway, with internet, I’m sure she’d read all the guff about diets. Yesterday my friend got the ‘all clear’… wonderful news… and she didn’t need to make her life even more difficult by only eating raw food! Thanks for posting Cath! Pat xx

#3

Hi Catch

Glad you are enjoying the classes, and yes, I am sure the best way forward is a healthy diet, just as long as it includes chocolate!

Pam x

#4

Hi everyone. I looked into the cave man or peleo diet but no way on this earth would I be able to stick to it. So I have just cut out junk with the odd treat. And I must admit I do feel a lot better in myself. Don’t seem to have as much down days. I have lost about 1/2 stone and seem to have some more energy. So it’s all good. Chocolate yes but not the dark stuff which is supposed to be best. Very overcast here today. Magsxx

#5

Thanks Cath, thats interesting info re the multi vitamins, not that I take them but I am sometimes tempted. Pat, a few years ago I was given some olive leaf extract, I happened to have a neuro appointment, I mentioned them to him and was quickly told to relegate them to the bin…apparently they can make our immune systems attack us even more! You did well to say no way Jose! I have been told by a couple of people that I should be on this or that diet, when I explain that it really doesn’t help and that a good wholesome diet with the odd treat is what is best for us, I’ve always had the look that says…oh well, if you don’t want to help yourself followed by my cousin/aunt/ etc was in a wheelchair until she went on this diet and now she is fine. How do you answer that one? Nina

#6

[quote=“Ninagrace7”] I have been told by a couple of people that I should be on this or that diet, when I explain that it really doesn’t help and that a good wholesome diet with the odd treat is what is best for us, I’ve always had the look that says…oh well, if you don’t want to help yourself followed by my cousin/aunt/ etc was in a wheelchair until she went on this diet and now she is fine. How do you answer that one? Nina [/quote] Nina, I have a friend who keeps pointing me in the direction of this diet or that homeopathic treatment. She survived lung cancer and went crazy on all that stuff, and I’m sure she credits those things more than the skill of her oncologists, radiographers and nurses for her recovery. I love her dearly and for a long t would just mumble some non-committal response. Nowadays I’m more direct. ‘No, Sue, that’s not for me. I don’t believe it will help me. I’ll stick to my balanced diet and physiotherapy, and we must agree to differ.’ Now with what Cath has told us I have more ammunition for my answer!

#7

Hi gang, im doing the Terri Wharls diet (another take on the caveman diet) been doing it since Feb 2013. There are some things i dont have as dont like them and until last christmas i was missing chocolate like mad. My OH found a site that does chocolate that i could have and it doesn’t taste much different to any other chocolate so thats good. I have wine (not much, practically tea total) but dont have whiskey anymore as found my spasms/ pins & needles got worse. I dont have dairy, gluten, legumes or grains so yes it is very restrictive. The thing is i have only 20lbs to go to get to goal after so far losing 68lbs. I go weightwatches and although most of my food is filling & healthy, i propoint & keep into my 26 propoints per day (i have coconut milk & some nuts ect that i have to propoint). I dont know if it is helping really as i have gradually got worse over the year but the question is would i have been worse than i am now if i wasn’t doing this diet? The answer is, i have know idea & no way of finding out, what i do know though is i feel better in myself being nearly 5st lighter so thats got to be a good thing, right?

Lisa x

#8

Kev and Nina I’ve done loads of research since dx as I’m sure everyone has and felt guilty because I haven’t been able to “help” myself by following unusual diets, I like proper food too much. I’ve also been made to feel guilty by others and have been tempted by the vitamins on sale everywhere to get my body functioning at its best. I was really surprised and relieved by what we were told and that’s why I thought I’d let you all know.

It’s difficult going to this course and wondering if there’s anything worth mentioning to so many of you who probably have more experience than me, but I’m so pleased I’ve given you the information you need to lose the guilt for just wanting to continue eating normal food. I know I have.

Enjoy your weekend

Cath xx

#9

Lisa Ann I asked about weight loss as I’ve got much heavier since I’ve been on my meds and my mobility has been limited and her answer was to continue with the fruit and veg and carbohydrate balance but cut down on the dairy, fatty meat and sweet element. We were told not to avoid them as you do need them but to be sensible, more white meat and fish, skimmed milk instead of full fat, less chocolate and sweets or sugar and low fat options in salad cream etc.

We also had a physio come to talk about exercise and we need 30 minutes of exercise 5 times a week. She never made us feel guilty but discussed how with fatigue, reduced mobility etc that could be achieved, it could even be done in 5 or 10 minute bursts throughout the day and for example hoovering can be classed as exercise if you think of your posture and use abdominal muscles. We should all see a Neuro physio who can show us exercises to improve areas we need to keep strong to improve our lives. Obviously we all have different limitations which is why it’s important for one on one programs.

I’m not saying you’re not doing right losing weight the way you have, good on you for managing, I’m sure I’m not alone in being jealous as I’ve not been successful, I’m just trying to pass on what we were told and I’m sure my health will improve when I’ve lost the bulk, I know I’ll feel better about myself. Well done.

Cath xx

#10

Hi Catch

I have found your course info interesting, and thank you for putting it on the forum, I am sure everyone has welcomed it.

I too have put weight on with medication, but the meds help me, so its a catch 22 really, and so difficult to do any purposeful exercise, but hey ho I will keep trying.

Lisa, well done for loosing the weight, all the best for reaching your target.

Pam x

#11

Cath, its always good to hear what you have gleaned from these sessions and this time it was exceptional because we have had confirmation of what we already thought. Always good to be able to put our guilt to bed! My first MS nurse told me years ago that we had enough to contend with so why punish ourselves with crazy diets. He also said that the MS society felt a straightforward healthy diet was best. His only other comment was to cut out caffeine as it can affect nerve endings. I did do that but to be honest it made no noticeable difference! Let us know how the next session goes Cath. Nina xx

#12

Thanks Nina and Pam. It’s our last session on Wednesday and I’ll really miss it. Can’t believe our 5 weeks is almost over. Our last topic is bladder and bowels which I’m sure many of those going don’t look forward to as much as I do, sadly.

Your comment about caffeine interested me as my continence nurse and urologist both mentioned it, and being a real teapot myself was quite sceptical about but I thought I’d prove it to myself and kept a chart for a week both with and without caffeine and was amazed when I realised the difference, I don’t have to self catheterise half as often without and things are much improved. I’m not precious about it but can tell the difference between days I don’t cheat. I initially had really bad headaches from withdrawal but it’s so worth it for me.

As you know we’re all different but it might be worth trying for people with elimination problems. It won’t suit everyone but I know of quite a few that do see improvement…

Take care and enjoy the weekend

Cath xx

#13

I am pleased you sleep well Cath…if a little envious! I think with MS you are usually the type that can sleep on a washing line or the type that can’t…all part of our adventure!! Nina xx

#14

Hi Nina I have always been a good sleeper, that is one of the reasons I am so reluctant to go on meds. I just don’t want that to change. I agree with the caffeine Cath. I had really bad bladder problems a few years ago and since I have cut out the caffeine it is a lot better. I still have to get up during the night but not nearly so much as I used to. I was like you very sceptical but it works so I am open to all ideas nowadays. I still have the odd accident so any tips you can pass on from next weeks session i will be very grateful. I can’t beleive it is four weeks already. Have a lovely weekend, Magsxxx

#15

[quote=“Ninagrace7”] Thanks Cath, thats interesting info re the multi vitamins, not that I take them but I am sometimes tempted. Pat, a few years ago I was given some olive leaf extract, I happened to have a neuro appointment, I mentioned them to him and was quickly told to relegate them to the bin…apparently they can make our immune systems attack us even more! You did well to say no way Jose! Nina [/quote] Thanks for that Nina… I actually did feel guilty saying NO… it’s true people think you just don’t want to help yourself and I nearly did buy some. So glad I didn’t!!! Very interesting posts from everyone… I think there’s incredible pressure to try all this stuff and these diets. We have to stick together and ‘just say NO’. Pat xx

#16

People are very judgemental about ill health. First, the assumption is you caused it yourself by doing something or not doing something else ( eg eating the wrong things / not exercising). Then comes the assumption that you should explore every avenue to cure yourself, conventional or otherwise. Yes, you will benefit from reading up on the condition and trying to understand what is happening in your body, but you must accept that there are specialists who understand it far better than you. They, and the medical researchers, are seeking ways to ameliorate or cure the illness on your behalf. I learned to hate the phrase “…lost his/ her battle against cancer…”. It isn’t a case of losing or winning… It’s not a battle against an illness. It is a struggle to manage every day life, and to ignore judgemental comments. The researchers are the ones fighting the battle. I think that’s what I meant to say…

#17

Hi Kev, I so agree… hate that ‘battle’ talk. You can ‘win’ or ‘lose’… so if you lose is it your fault… or did you not fight hard enough? Very wrong way to look at illness. Pat xx

#18

Kev I agree that people become really judgemental about us not wanting to help ourselves. They hear about a diet / exercise / medicine or supplement from the newspapers, internet or auntie … and because you don’t dash out to buy or try it you’re your own worst enemy and enjoy being disabled. I hate it and get really worked up!! I know they try to help but if we followed every piece of advice we find we’d probably end up in our coffins a lot sooner and I for one have a lot to live for, as I’m sure the rest of you do.

Thanks Everyone for your comments, as Pat has said there has been some very interesting and valid points raised on this topic and I’m so glad it eased the guilt trip some of you faced. Roll on Wednesday night and the last session. If any of you have any bowel / bladder questions you want answers to please let me know. Thanks.

Cath xx

#19

[quote=“Min”] Roll on Wednesday night and the last session. If any of you have any bowel / bladder questions you want answers to please let me know. Thanks.

Cath xx

[/quote] He-he! How long have you got? I guess we could start a whole new forum just to talk about this!

#20

Cath, if you do read this in time, I do have a question that might be worth putting. Simply put, it seems obvious to me and whatever skewed perception that remains in my pelvic girdle, that bowel and bladder functions work in tandem, or not, as the case may be. For instance, put crudely I find it difficult to pee if I need to fart, but I can’t fart and so on and on. And yet when I get referred to a specialist it’s either a urologist who dismisses any bowel questions because they’re not his/her speciality, or a colo-rectal specialist who won’t discuss urology. Can’t we have a combined specialism? Of course, if this is just my local experience and everyone else can see a bowel plus bladder specialist, I retract my question and will direct it to my GP. Have fun tonight! Kev x