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Tuesday, July 15, 2008

Essential Questions Rewind

Several months ago when I started this blog I challenged myself to study and research five essential questions regarding MS. At the time I posted the questions my readership was much smaller and so now I am reposting the questions in hopes that some of the MS community might comment on their experiences. So far I have only heard from Suzanne Carroll. I posted her letter in May. Here is my challenge to my readers: if I have linked your blog to my page, I hope you will take some time to sound off on at least one of the questions posted below. Email me or just comment on this page. Thanks in advance.

In education, when we tackle a topic, we start with an "essential question," and then the explorations our students complete and the assignments they do focus around those essential questions (at least when we do our work well). Here are my "essential questions" regarding MS.

1) What causes MS (scientifically), is there quantifiable, valid data even available?
2) Can MS be cured?
3) Do "interferons"and other meds help, which seem to have the best results, is there a good body of data supporting one medication or another?
4) Can MS relapses be averted or minimized by life-style modifications, holistic approaches, exercise and meditation?
5) What regimen of diet and exercise works best for the majority of MS patients, or is it really about each individual finding what works for them?

*Since I first posted these I have occassionally commented on them. I have my own theories about all five now but I want to hear from some other MSers about what they have learned. Please take my challenge.
Thanks again,
Nadja (Denver Refashionista)

9 comments:

Shauna said...

If I had more time and energy tonight I'd answer all five, but for now will tackle only one.
#4
I believe in a holistic approach to my health in general so apply it to MS as well.
First:healthy food in healthy amounts.
Exercise: somedays it's just cleaning the apartment, other days it's a 10k ride on the bike, and some days none. But I attempt some form of exercise a few times a week.
Mental relaxation and stimulation: I learn something new every day. I take anywhere from a few minutes to an hour every day to relax my mind and do nothing mentally challenging.
Take my meds as prescribed: That means researching them and talking with my docs about them and then taking them.
Re-reading this makes me sound like a health nut, but I'm not. I have vices but what I've stated above is what I try to do. The big question remains though: Does it make a difference?
By trying to live a healthier lifestyle, I am giving my body an optimal environment so my brain can concentrate on the MS; healing destroyed myelin, perhaps making new neuronal connections to go around plaques that interfere with nerve transmission.
In 10 years of MS, I've had a total of 3 attacks. Only one was while on a DMD. Is it because of lifestyle, mental attitude, drugs, genetics, or the alignment of the stars? Don't know. I did joke with my neurologist that it was "sex, drugs, and rock and roll" that made me do so well. And maybe that's what it is. It works for me so far.

S.

Nina said...

Well, I am not sure I can tackle any of these with valid information but I will take a shot at #1.

I strongly believe there is a link to MS and Vitamin D. The high risk areas of the US/World also happen to be areas which get little sun.

When I was first diagnosed as having low vitamin D, I was pretty worried given all the research that links vitamin D to certain illnesses. My worry was confirmed when I went blind that one day.

Here is a link which found incrased risk for MS with low Vitamin D levels:

http://www.ncbi.nlm.nih.gov/pubmed/9316607

Denver Refashionista said...

Thanks so much for your thoughtful responses ladies. Shauna, I too am taking a holisitc approach to my healing and/or maintenance. I do many of the same things you do and operate under a similar philosophy.

Nina, I also have heard and read a lot about the vitamin D link. I think it applies to most people with MS. Ironically,mine is not low...

Nina said...

Oh, one other thing. I totally believe eating healthy, controlling stress and exercise might be the key to controlling MS. I know the reason I picked DMD's is because I don't have full control of the three things above. I have lots a good amount of weight but I am not perfect. I exercise but I am not perfect. I try to control stress but I have a stressful job. Maybe the DMD's will provide the extra help that I can't give myself right now?

Denver Refashionista said...

Thanks again Nina. I actually was wondering why you were taking the DMDs but now it makes sense. I agree that the other factors you mentioned seem key. Have you been tested for a wheat allergy? My acupuncturist thinks this may be an issue for MSers but I still have to get the test. In the meantime I am testing out a few gluten free products to see how it goes.

Nina said...

I was just driving around tonight saying I should stop wheat. I did feel bad without but man, it's hard. I was down 70 pounds before I found out I had MS. I am up a few since but I have good excuses.... steroids do bad things to you.

Diane J Standiford said...

1. No one knows for sure. Myelin is destroyed, that much we know for sure.

2.NO

3. Unknown. Will be 30 years before we know. They all statstically are said to have the same outcome. No, none proven better than any other.

4.Unknown. No data. My goal is to do the best I can to keep my body/mind/and soul as healthy as possible. MS is just one bit of my life. Many other things will affect my body; I keep it simple. Good food, good sleep, good exercise, good friends, good partner, laughter, use my brain to explore all life offers. Did all this b4 MS and will do so till I die. I haven't had a relapse in at least 5 years---not uncommon after 40 years of MS, nothing to do with any of the above.
5.) Diet etc., affect people w/MS just as it does anyone. Milk,gluten, etc., allergies long been disproven as stopping MS (or we all would stop them.)

People get better after eating/not eating something. or after whatever, and they will SWEAR that is THE answer. Sadly, as of this date---there are no answers. Just do what makes you feel good.


4.

Diane J Standiford said...

Vit D: If everyone were tested for Vit D MANY would be low, and not have MS. Just another MS fad. They come and go.

Denver Refashionista said...

Thanks Diane. I was really hoping you would respond because you have a ton of experience with the "fads" and with the disease itself. I agree that it's mostly about ones attitude. I think that is the case for all health issues. If we value our life, we tend to live. If we take care of ourselves we live better...