Modern Day Hunter Gatherer

[F.U.MSContributor]

I’ve been reading your posts and have noticed some people talking about vitamins and supplements and basically what helps with MS. If you would like to see something awesome, please watch this video. It’s almost 20 minutes long and worth every second.

http://www.youtube.com/watch?v=KLjgBLwH3Wc

I would love to hear what you think.

Aaron

[TrinaContributor]

Hey Aaron. I watched the video. Thanks for posting. I have heard/read about different variations of this. I do watch what I eat

[TraceyMember]

Hi Aaron and Trina (others)

I watched the video and I just generally don’t eat that much during the day. I am for the most part a healthy eater but not to the extent that she is suggesting is necessary. And I do take some supplements (omegas, D, . Is the extreme-ness of her diet a necessity or is moderation more reasonable, is a debate I have with myself. (I generally do better on moderation–can sustain moderation for long periods of time). It has got me thinking….she does have good points.

How do you guys/gals deal with the diet aspect of all this since you’ve been managing your disease for a longer period of time? Since I’ve only been dealing with MS for a short time; I’ve been more focused on the life adjustments etc over diet thus far. I plan to slowly make my diet even healthier over the course of this next year but not sure I could sustain her strict diet……and I am not sure its necessary for every person either. She doesn’t indicate her lifestyle before the change, nor does she indicate if she’s still on MS medications etc. So we don’t know baseline before she made changes??? Did she have her vitamin levels tested before taking on this diet to understand her deficiencies??

I know someone whose disease was out of control (she wasn’t able to use various limbs etc) for about 10 years then things stabilized and she is presently fully functional(the last 22 years) without any of the medications or drastic diet changes. I don’t think she was ever offered the DMT’s that are available today. My point is that this all seems so individual (it comes back to this when my doctors cannot answer some of my specific questions)….what works for one person may not work for another. That being said—being healthy is generally better anyway–for your overall health beyond MS.

Thanks for the post . It puts eating generally into the large context of health and well being. I think it means more for most of us since we have an added layer of MS on top of everything else.

[F.U.MSContributor]

I think it would be very hard for anyone to eat what’s in her diet. Like you said though, being healthy is generally better anyway. When I first got diagnosed with MS 13 years ago, I was the worst eater ever. I ate Burger King for breakfast, McDonalds for lunch and Pizza for dinner. Those were the only things I really ate. I smoked a pack a day and drank about three cans of coke a day as well. Just writing that makes me feel gross! Over the years I’ve changed my eating habits and my body has thanked me for that. Something as simple as drinking lots of water, eating greens and fruit, and limiting my junk food. I still eat some junk food snacks and we have one of the best Burger joints here in Toronto. I’ll go to it once or twice a month instead of once or twice a week. Everyone is individual as you say. You just have to listen to your body and figure it out over the years. I am going to try my hardest to start liking Kale.

a

[TraceyMember]

When you figure out how to like Kale let me know . I haven’t figured that out either!!

[AndreaSContributor]

Hi Tracy (and others)!

You bring up some really good points about the validity of her information! I do definately agree with you. a lot of those diet type things are “proven” by case study, and you really can’t prove anything with a single case. I actually ran into a doctor a few years back who subscribed to the view that diet and supplements were the cure for everything. To make a long story short I’d been interested in diet for a while and doing some research, she “diagnosed” or “baselined” my deficiencies by having my fill out pages upon pages of surveys. (this was clue 1 something was weird) she asked me to stop all medication (clue 2). I told her until my neurologist said that I wasn’t going to. she then suggested an entirely fresh diet, no corn, wheat, or sugar, only chicken and fish. Relatively similar to this diet here. I actually tried it for a little while. I think I was only successful for a couple days. I agree with your point about moderation being sustainable. I still eat well and watch my vitamin intake. My friend laughs at me because she often gets groceries for me and they are mostly fruits and vegetables and fresh foods (but not entirely!). Also food is a social thing. and if you are on a diet such as the one being suggested it is very difficult to participate in the social aspects related to food which I think are important. I think that is where I fell off, and will never retry! not to mention the expense and even more importantly the time it takes to prepare a diet such as this one. and I don’t know about you, but I have much better things to do with my time (such as rest!)! I think you have to find a diet or eating plan rather, that you are comfortable with, that is sustainable for you, and that you can manage in whatever situation you are in now, and then just try to make it a bit better here or there.

Oh and one final thought! While you are busy trying to like Kale, I can’t even get it, so I’ll have to work on that before I work on liking it!

[TrinaContributor]

Not as restrictive, no. I have cut down on a lot of the junk I was eating. I watch the sugar, refined carbs, limit the dairy, try to eat more fruits and vegetables, lean meats…that kind of thing. I cut out the diet pop and unfortunately had to ditch the coffee. The caffeine bothered my head.

Some friends tell me they love kale chips. You bake pieces of kale in the oven with olive oil and they become all crispy, like chips. I have heard they are delicious. I have never tried to make them myself though. I really like real chips

How were your exams, Tracey? That was you, right? Working on your Ph.D, studying fish? Are you back in Kuwait, AndreaS?

[TraceyMember]

I found a recipe for Kale chips in a cooking magazine. I plan to try it as soon as I have some time. I like chips too but have stopped purchasing (cause I know they aren’t good for me).

I got through the first set of written/oral examination this week with a pass. Yay!! There have been scheduling issues which has delayed things a bit for me but I needed the time anyway so it worked to my advantage. Unfortunately, I have been experiencing a minor relapse of sorts since mid-December. My body doesn’t control temperature well at times, my one eye has developed the shakes or a burning sensation, and it feels constrictive to breathe sometimes (pain). I am guessing this is due to stress?? and likely taking the wrong yoga class. My relapses often onset after strenuous activity thus far–so no gym workout to relieve stress as in the past til I can figure out the balance between ok and the relapse. The eye issue has made reading hard and it causes headaches. It has gotten better for the most part but it certainly makes things more difficult and I am less efficient with my time. I’ve had an MRI in the mix of things and will know how well my medication is functioning in the near future (year 1 anniversary for drug use is in 2 days).

Thanks for asking : How are things with you (and Andrea as well)?

[AndreaSContributor]

Let us know how the Kale chips turn out! If they’re good can you post the recipe? I might be interested in giving it a try! I really hope you get better Tracey and are able to study effectively for your exams. Good luck!

Yes I am back in Kuwait. Thanks for asking Trina! I’m back teaching full time. It’s been a bit of a struggle. The 3 weeks over holidays helped me alot. I’m at a point where the only things that help seem to be rest and physio. So I improved a bit (but still needed crutches).

When I returned I was able to see my neurologist here (who has comparable experience and knowledge as Canada) I hadn’t been able to see her since Sept. (long story)! but anyways she talked me into doing a round of steroids. Here they admit you whenever you are getting steroids. I insisted that I had to work as it was the first week back after the holidays and I’d missed the week before the holidays already. So I worked days, they admitted me ALL afternoon and evening, and then went home to sleep. It was pretty aweful! and made me worse due to the lack of rest and side effects. I generally hate steroids and try to avoid them, but she wants me on something stronger then avonex and to get it covered here I have to try and fail all the other treatments first!

Now she’s tried me on a newer drug fampyra. (it’s not yet improved in Canada) It’s supposed to improve walking by increasing neuro conductivity. It worked. My walking is faster (still super off balance though!). the issue is that I am SOOO hypersensitive I can’t be touched and have a tough time with clothes. I’m also getting lots of tonic spasms again and constant spasms as I walk. Due to the spasms, spasticity and pain I’m not sleeping. I tried for a week but it’s not worth it so I stopped today.

They are trying to get me on tysabri so I’m off my lupus meds (yeah I have both lupus and MS! the Lupus isn’t active though Thank God!)I have to be off them 4 months in advance and I can no longer get avonex here (I don’t qualify anymore) so I’m off all disease modifying therapies likely for 4 months. Both of my neurologists are calling me secondary progressive. I have been out of remission constantly for a year, and not responding to anything. It’s been a bit of a whirlwind! There’s a lot going on at school and with some students in my class too. My life has been pretty consumed with hospital and school. I’m trying to just trust God at the moment because there isn’t much else I can do. I can’t control the disease course or the treatment that I’m receiving (or not receiving) and worrying is just going to make it worse, but right now it is hard.

[TraceyMember]

I tried the kale chips; not bad but they certainly will not replace potato chips in terms of taste. Ah well, in the spirit of healthy eating no more potato chips anyway. Its an easy recipe: kale ripped into pieces, a bit of sea salt and olive oil. Then bake for a bit til the kale becomes crispy.

Hi Andrea,

Sorry to hear things are more difficult for you. I’ve been keeping up with reading all the blogs but not so good about writing on them as of late. It sounds exhausting to manage all your symptoms and work. Sometimes I wish that this would go away for me if only for a short period of time….and I have only had to manage this for a short period. I can image the strength all of you have acquired in dealing with this stuff for such long periods of time. And I can understand how all this is super hard…… I love my career too so I totally get the desire to keep working. I try to appreciate the good things in my life everyday and stay positive but its a hard task sometimes (and I would imagine this is the case for you and others as well).

[TrinaContributor]

Hey there. Sorry I haven’t been on in awhile. Busy. Good for you for trying the kale chips, Tracey. I have to say, I haven’t tried them yet. I have good intentions…just haven’t gotten around to it yet.

So sorry to hear you are having a rough go of it right now, AndreaS. I had that problem with extremely sensitive skin during one of my relapses. I know what you mean by problems with the clothes. It was winter then and everything was long sleeves and layers…it was bad. Later it moved to my feet. Thankfully it was summer by that time so I could wear flip-flops but my son was a toddler then and was clumsy and was always stepping on my feet. Again, not good.

I really admire you for teaching overseas. I hope things start looking up for you soon healthwise. Take care.

[Author]

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