This Is MS Multiple Sclerosis Knowledge & Support Community

Hello,

To introduce myself, I am a student who is currently working on a dissertation in the final year of an Advertising BA (Hons) course.

I am creating a campaign for the benefit of the MS Society which is intended to raise the public's awareness of Multiple Sclerosis.

As part of my research I am therefore interested in understanding the different ways people cope with MS on a day to day basis.

To live with MS is of course difficult and your experience very personal, but, if anyone has a different or interesting approach that helps them and is willing to share this with me, it would be extremely helpful to hear your thoughts so that I can reflect on how best to position my campaign.

Many Thanks,

Michael McCallum

Hi Michael,

I cope by taking control of what I can, actively researching and doing things that might have a chance of changing disease course, ...and I laugh a lot and enjoy life. I don't really think that is interesting or unique though. Sorry!

Good luck with your project!

Hi Michael
For me, it is about hope - hope from each new piece of useful information I learn. Hope from feeling/doing better even for a short period of time. I watch for reactions to what I do and don't do. I use these observations along with research into what is needed for people to be truly healthy.
One piece of information that has been driving many of my actions was when an M.D. told me that people with ms are magnesium wasters. This information along with my very positive experiences with (transdermal) magnesium, made it abundantly obvious that Mg is indeed one of the keys to getting better. Studying magnesium has also been fundamental. One big obstacle to realizing my need for Mg was when I asked a (different) doctor for a magnesium test and it came back "Normal". Eventually I ran into this highly credible study that really made sense of things:

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results.

http://www.ncbi.nlm.nih.gov/pubmed/20170394

I do have many symptoms of magnesium deficiency that the doctors attribute to my ms. But, I am going with my research and my experiences regarding Mg, especially in light of the fact that doctors have received, on average, only 23.9 hours of training about nutrients -

Status of nutrition education in medical schools

On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/

Something that I was hopeful about was the chance that maybe my ms symptoms were from a B12 deficiency. The book, Could It Be B12?: An Epidemic of Misdiagnoses, states that about 10% of people diagnosed with ms actually have B12 issues. I have been taking methylcobalamin injections - the gold standard for B12 treatment and the kind recommended in the book. This did not clear up my ms symptoms though.

In the last month I have discovered that I have been chronically dehydrated from drinking only reverse osmosis filtered water, which is devoid of minerals. I have had some very encouraging results from switching to filtered tap water. At this point the results have been temporary.

So for me it is hope through research, experimentation, and positive results.

Good luck Michael

Thanks for your help.

I've seen discussions of what other people with ms would like the public to know about our experience, here at Thisisms, in the comments of Dr. Giavvanoni's MS Research Blog, and on the discussion boards at MS World Forum. If you haven't found it yet, you should also look at the blog called WheelChair Kamikaze.

My first thought is it would be helpful if you can show that ms is worse than it looks. People need to know that finding more effective ways to fight ms is important, and that current treatments aren't effective. I'm always told how healthy I look. Pain and fatigue don't show. Tremors and limping show, but someone who watches me walk on a bad day is more likely to think I'm drunk than sick.

I look fit, because I work to stay otherwise healthy, because it's a tool I have to fight the degenerative process and I'm damned if in future I'm going to be dependent on someone else to transfer in and out of a wheelchair because of a few extra pounds.

I'm not sure I can explain how I cope without the details of what we cope with. I didn't, when diagnosed, know what ms was beyond the name. Most of your audience will also not know. So, if you haven't yet, read the expanded disability status scale doctors use to track our disease. And look at the prevalence. At one per 1000, everyone knows people with ms whose disease doesn't yet show.

Hi,
I agree with Calireader, in that ms is a horrible disease and people truly do not understand how bad things really are. They don't realize the complete loss of control over your body. If you look 'healthy', they assume all is well....not the case. This disease takes away our abilities and we can't do anything about it.....but we're tryin'

Thank you very much for the responses, this is all very helpful and highly appreciated.

Best Regards,

Michael

I am so tired of coping with MS. My acceptance of it is like my MS - it remits (I accept/manage), it relapses (i cannot be bothered with it any more).

I describe myself saying "Zombies do exist… the just call it MS and we don't eat your brain".

I am so over it. I am so sick of one part going, just as you learn to deal with the last lost ability.

People think you are exaggerating - I wish! I wish it was a lie. I wish I could get up tomorrow and say 'oh yeah, I can walk, i'm just being lazy'.

If I were going to do advertising for MS, I'd do a campaign, not a single shot. And it would be MyStory, and take it from the perspective of the different people: a mother who is like a statue as she watches her kids run around, A man with an attractive woman in front of him, but with concrete from the wast down. A young woman on maybe her wedding day, and one side of the ad being what she sees (so the outline of her head, very little detail of the face), and on he oner half, what she actually looks lie, and it is with many mistakes (i.e. eyeliner too far up, lipstick out of the lines). Even another double layout page, one side being a few stairs, the other bring a mountain.

There are so many creative strategies for advertising for MS. That you have chosen to do your thesis on it intrigues me. I often feel I would rather fall into the shadows, so when someone looks t it, and says that maybe they not only want to learn a it more themselves, but also want to invite others to, it shows such a developed world.

Best of luck.

Hope you get a HD

I don't cope with it, it copes with me! As you have heard from other post already, attitude is probably the most important thing in coping with MS. If upon diagnosis, a person resigns themselves to the condition and the so called average expected outcome then things will tend to meet those expectations. On the other hand, just as you have seen on this board there are those who take initiative and responsibility for there desired outcomes. People who are willing to work hard to make the very best of their new circumstances, who always do better than those who take whatever comes. Sounds like the rest of society doesn't it?

Fatigue, psychological problems and cognitive changes (which unlike a lot of symptoms are not obvious to those who don't know much about MS) can be very distressing. I thought people with MS complained a lot more than other people with medical conditions,ie seemed less stoic. It makes a lot of sense now that I understand what goes on behind the scenes..

I do not cope with it, I just trying to live together like neighbors doing it. It dictates some terms of armistice and I only need to follow them and I succeed to do it. I use a wheelchair but doing all by myself in spite of living alone.

In.isolation..and...with....great.....difficulty.

I don't have MS but my wife did for about 36 years before she passed away in 2007.

In your campaign you may want to also address the effects that MS not only has on the patient but spouse, other family members and friends. As one other poster mentioned, many people don't really understand what the patient and family goes through when dealing with this disease. This lack of understanding makes it even harder for those living with MS and trying to cope with it on a daily basis.

In your campaign you may want to also address the effects that MS not only has on the patient but spouse, other family members and friends.

My heart goes out to relatives and friends who know of people with M.S......Michael if you do mention this, please bear in mind to put it in context...much like my heart goes out to war torn Syria.