DD needs your help
 

Hi! My name is Elissa Berg the daughter of the wonderful Cynthia Berg. I am currently in school at the Southwest Institute of Healing Arts where I am studying and having fun learning how to become a massage therapist. My last class I must complete is Pathology. In this class we have a final project on a disease or disorder of our choosing. Since MS hits close to home [since it is present in my home ;)] I have chosen to present it to my fellow classmates. This is where you come in! I would love your input on the BEST way to communicate what MS is and how it effects day to day life to my peers. Any suggestions to make learning fun and interesting??

Thank you either reply to my Mom or at elissaberg@live.com!

Elissa Berg

I need a little time to think about this, but let's keep it bumped up where everybody can see it!

Here is the first thing that occurs to me, Elissa:

Most people with MS have their own pet analogies to describe their symptoms and struggles. Saying to someone "trigeminal neuralgia is like having someone drive an ice pick into your jaw" only REALLY works if the other person has had an ice pick driven into his jaw. Most people haven't!

I would suggest some "experience it yourself" object lessons. (No ice picks, of course :)) For example, I've heard of someone being asked to put on one swimming flipper and trying to walk, in order to understand (somewhat) drop foot and other gait problems.

I describe the feeling in my left leg as "like wearing support hose or too-tight leggings". I have the sensation of water trickling or dripping on my skin. Moving around sometimes feels as though I'm wearing weights on my ankles and wrists. All of these symptoms could be simulated with a support stocking, a few drops of water, and some weights.

Glasses with vaseline smeared on the lenses is another example.

Of course, things such as I've mentioned would give someone an idea of a symptom, but I'm not sure what kind of props you'd use to give someone the idea of feeling like you're 90 years old!

What a great idea

My first thought was getting someone to wear weights strapped to their ankles and ask them to walk through thigh deep water and ask them to run for five minutes - or get them to wear a hood made from interfacing (the fine mesh that they use when making clothing - it would make the world blurry and foggy). I love the idea of Vaseline on their glasses. Blindfold them, spin them around ten times and ask them to perform a series of simple exercises (touch toes, hop on one foot etc)

Alternatively, could you ask them to stay awake for 24-36 hours and do a mind puzzle like Sudoku or get them to try and memorize a Shakespeare sonnet? Record the response so they can experience how fatigue can affect normal mental functions.

You could try compression bandages on their arms and/or legs - but be careful, we feel it, but I don't know if the reality could be harmful?????

Good luck and I hope that you are able to make a realistic scenario. People have not really got any idea about it - and we can't simulate cramps/spasms or nerve pain - or the thousand other things that we get from time to time.

The level of fatigue is mind-numbing and body crushing - while I wouldn't wish it on anyone, I wish more people understood.

Lyn

Try to hold a pen or fork while wearing heavy mittens or boxing gloves.

Wear playtex gloves on your hands and try tying a shoe.

Try to appear "not drunk" while weaving through a crowded store (with people staring at you).

Put on a pair of shoes a size too small with extra thick socks on. Then walk normally.

Struggle to find the words you want to say while someone looks at you impatiently.

Trip over flat ground.

One last thought:

Fix a simple cup of coffee without making a complete mess. :o

Spread butter on toast with a numb hand without dropping the knife. :mad:

Carry food on a plate from one point to another and still have at least some of the food left when you get there! :rolleyes:

There is a fundraising event here in Oregon (and at least in one other state) where people run an obstacle course that is made to make them feel some of the symptoms you could get with MS. They have a long trench of thigh deep mud you have to run through. There are all kinds of obstacles in it, and I can't remember what they are (thanks MS).

Maybe you could set up your own obstacle course. Like wear thick snow gloves while trying to put on a coat with a zipper.

Then look through binoculars backwards and try to fix a cup of coffee without making a mess.

Then the flipper on one foot and have them walk across the room and the spinning them around and then do simple balance tests.

You could have them sit at a table and try to write nicely while someone shakes the table.

Also the walking with weights strapped to their ankles.

If you could have them cross their eyes so that they see double and thread a needle.

Put a girdle on them and tighten it up just to where it's uncomfortable (to keep it safe) to simulate the hug.

Most of my symptoms are pain and you really don't want to simulate those for safety reasons, but the way I would describe my legs would be if you wrapped hot black top around my legs on a summer day. Trigeminal Neuralgia is like to worst toothache you've ever had in several different places and something pushing intense pressure behind your eyeball.

I can't seem to think to give you any more suggestions but if I come up with any I will let you know. But I want to say that I think it's great that you are doing this. Most people just don't understand MS at all. The invisible symptoms are the most difficult at times. Most people look at someone with MS and will say, "You look so good!" That can be so frustrating when you feel so crappy! It's nice to see people raising awareness for MS, thank you!

Kristie

When I was a little girl I had this invisible friend. I didn't tell anyone about her because I thought they would laugh. I always sat a little on the side of my seat to make sure she had room to sit with me. Well I still have this secret friend. Some days she likes to be with me more than on others. She is very bossy and likes to have things her way. And some times she is mean. She has this terrible electric prod that she jabs in my toes whenever she wants to. She has her invisible water she drips on my arms and legs and her invisible bugs that crawl just on my wrist, no where else. She makes me stay awake a night for no reason. she shows me that she can run and have fun and I can just walk. She loves to move things so I can't find them. I wish I had never gotten my invisible friend.

I guess I should say that this is all a true story. I did have an imaginary friend. I wish I could remember her name. She was with me for a long time.

Cyn - First of all, I think it is great that she is doing this. Please share this with her . . .I started getting weekly massages back in late January/early February. The hug and spasticity were so bad at that time I was actually swollen all around my ribcage and basically had to just lay in bed due to the pain - muscle relaxers and/or Ativan barely put a dent in the pain. Over the course of the 1st month, things improved and have continued to improve. She only does a 1/2 hour gentle massage but it has helped me out so much. Recently, the hug started acting up again. All the intercostal muscles are in a tight spasm making it uncomfortable to sit and to breath. Once again, she has been able to work them out, for the most part, and has been coming twice a week. I have not had to take a muscle relaxer in months due to the massages, at least that is what I feel (although there are some days I probably should).

In addition to what others have posted, here is a link to a MS simulator. I know I posted it before but it is a great way for others to get a glimpse of what it is like to have MS. http://havingms.com/simulation If she has some sort of projecting computer or even a laptop to bring in to class and they have internet access, it would be both fun and informative to her classmates.

If I think of anything else, I'll let you know. Oh, wait. Can bring in food, any kind would work, and walk up to those eating it and just shake their arm or jerk their arm to simulate the tremors some of us MSers deal with. It would be hard to give an example of fatigue but, as I explain to others, it is like coming down with the worst flu you have ever had - the kind where your body aches and you're so tired you just have to go to bed. Most people will know exactly what you are talking about. Some of us MSers deal with that on a daily basis.

I wish her all the luck in the world. Please let us know how her project goes and keep us updated.

The ideas here are so good, I am sure her presentation will be both informative and "fun" with the interactive ideas which will generate interest and hands-on understanding.

THANK YOU. She has two weeks to put everything together for her pathology class final and wanted me to pass along that she will have me add a note from her once everything is completed.

Until then, she still welcomes your ideas/thoughts. I always pride myself in coming up with creative concepts/ideas but truthfully, I do not hold a candle to what you all are giving her.:hug:

I was going to suggest she go to Multiplesclerosissucks.com But it seems that Ian Parberry closed it down....sorry???

I read that website back when first dx'd back in 2005. I wonder what happened to close it down.

Ian seems to have disappeared from everywhere. He is not on FB anymore either??

no clue. I have not looked at MSSucks in a long long time.

I find the most effective (in my experience) way to describe the 'technical' side of MS is to use the imagery of electrical wires with the plastic coating on them (to mimic the nerve in an MS patient).

People begin to 'get it' when you tell them that MS can affect the central nervous system as a whole (and most folk I meet don't fully understand the CNS either - I tell them, everything from the senses to mobility - walking, for example).

Then I explain the process of the disease eating away at the myelin sheath on the nerve like taking a knife and peeling back the plastic protective coating from the electrical wire. What happens when you expose bare wire running a current? Many bad things - and most people at this point have the 'ah HA!'.

If they really want to know how it affects me personally, I tell them "I'm very fortunate that I am not affected with my mobility and cognitive thoughts. I went for years thinking I just had a very bad migraine or headache". Which is the truth. I am very fortunate, but I too make it a point to explain that everyone with MS is like a fingerprint - completely unique from one another and with their disease course.

What a great project!

I don't think there's a single best way - there are so many different symptoms and it hits each of us differently.

I'm going to have to give this some serious thought! I'll be back...

I'M BACK ALREADY!

I liked dmplaura's 'technical' description so much that I'd like to tack onto it in computer lingo:

I have more than one medical condition - juggling heart disease, diabetes and multiple sclerosis is like have several Windows tabs open simultaneously. You jump back and forth as needed and things seem to be under control most of the time.

My blood pressure is 185/110? There's an app for that...take one clonidine and it should come down soon.

Chest pains? There's an app for that, too...pop a nitro or two and the pains should subside. If not, reboot on the way to the hospital!

Glucose reading too high? Another handy app exists! Take the Metformin dose you forgot this morning or finally agree to go on insulin. Oh, yeah - and back away from the donuts.

The heart and diabetes problems are like running software programs with logical pathways and solutions. Updates are loaded onto the system periodically providing you with new solutions and better results. You still have the problems, but the software is there to make managing those problems much quicker, easier and efficient.

MULTIPLE SCLEROSIS IS DIFFERENT. Rather than software developers working on programs to help you manage the problem, Hackers use MS to gain access to your system and spread havoc in your entire Operating System! An MS relapse is like opening the wrong e-mail attachment one morning and seeing the message, "HAH! You are SO screwed today!" flash across your screen!

Back to your project...there's one practical exercise I do recommend

So many here have left you excellent (and even fun!) suggestions for trying to actually demonstrate what it's like to function with MS. I don't think I can come up with anything half as good as stuff others have contributed. I will add a suggestion for a final homework assignment, though, and it's more geared toward having them try to imagine planning for the future with MS.

I'm sure most of your fellow students get to class in their own transportation, whether it is by car, scooter, motorcycle or bicycle doesn't matter. Suggest that anyone interested that day pick a safe spot along the route home to try a quick experiment: if there is no other traffic or obstruction around, have them briefly take one hand off the steering wheel and cover one eye, then try to imagine that they are going to have to drive the rest of the way home like that. Then ask them to imaging being struck with double vision in rush hour traffic, surrounded by cars on all sides and traveling at 65 MPH. And you're in the middle lane. Again.

That happens to some of us in real life, and covering one eye allows you to at least try to navigate to the nearest exit and get off the road. The real point of the exercise is to imagine the impact of a single MS symptom on many aspects of life:

INDEPENDENCE: When do you voluntarily hand over your car keys to your spouse because you're a danger to yourself and others and you never know when something like that will strike?
YOUR SIGNIFICANT OTHER: If you can no longer drive to the grocery store, your doctor appointments, the kids' soccer practice, did you just add another layer of caretaking duties to your Loved One's shoulders? He/She swears he doesn't mind, but YOU do.
FINANCES: You were driving home from work when this happened for the last time. Now what? Can you keep your job if you can't drive to work? How will you find another one? Are you off the job market permanently now, even before becoming seriously disabled? Possibly. Probably, in fact.
SELF-IMAGE: You have just made yourself less functional, less effective, less...well, just less. If you weren't clinically depressed before, this might be the tipping point.

The list of impacts could go on at length, and I think this homeword assignment might bring home the insidious nature of MS to some of your fellow students. One little symptom like sudden double-vision can ripple through every aspect of daily life. And there are no apps for that.

Good luck with your project and please let us know how you do on the assignment. We are all cheering for you!

Oh yeah I thought of something for the double vision. A lot of people can't cross their eyes, I know I can't. So you could bring in a pair of clear glasses and tape a piece of paper between the lenses so it is sticking straight out and not covering the lenses, that gives a bit of an idea of what my vision is.

There are some really great ideas here.. I can't wait to hear how this goes!

I posted on the wrong thread...

ROFL!!! I absolutely love this! Brilliant.

How about tying their feet together loosely with a figure eight of rope then have the try and walk with their feet heal to toe fashion to simulate the clumsy cordination issues?

Have them wear two turtle necks (one over the other) in the summer heat to simulate the messed up body temputure that is sometimes caused by ms?

:winky:

Here is a picture of Elissa and me after she gave me a floor massage. Whose smile is bigger? Mine!

Oh my goodness - what a pretty girl, you must be so proud of her, and what she is doing to bring awareness to people.

Lyn

What a great picture of you two!!! Such beautiful women you both are!:hug:

Massages make such a big difference don't they. I am glad it helped you too and it will be so great to have a massage therapist in the family. You will find that you need less medication after the massages - or at least I do. :hug:

Anyhow, let us know how her project goes and what she does.

Youtube?
 

May not be the best idea ever, but there are lots of patient experience videos on youtube and those are always interesting and creative. Check them out, too. Take care, Heather

Indeed, I remember watching Lauren's video in a relapse right after I got my own diagnosis. I cried right along with her. It really helped things make a lot more 'sense' at the time for me being newly diagnosed.

Love your picture, Cyn. Thanks so much for sharing..:hug: You are such a pixie, love your hair..:)

DD's presentation at her massage therapy final was a huge success. She sent me pictures to post but I am having problems figuring out how to attach them. It is on my things to do list but I wanted to post to let you know what she did and how it was received.

At her table, she had reading glasses with a lens smeared with vaseline; DH's shirt and a pair of dish gloves; writing paper/pen and she was ready to jiggle the table.

On a large poster board, she drew the NMSS logo and took various suggestions from you and printed them, backing the various entries with colored paper.

Most of the people did not want to try the interactive examples of what it felt like to have MS. That was a surprise to her and to me.

However, EVERYONE read the various entries you had posted. People took a lot of time to read and the main reaction was feeling an insight because you all are real people with a real problem.

You all made Multiple Sclerosis a personal experience by replying to her request.

Funny how I thought everyone would love to "do" things but one never knows what to expect.

Thanks.:hug:

haha. She had sent me this thank you but I only got the pictures. I jumped the gun to say what she had said to me and next thing I knew, she had written a post for all of you!

So it may sound like a repeat but in her words...

To all who responded:

Thank you so much for all of your input for my Pathology project. It went great! I made a poster where I put up all of your posts and I had two simulation games. When people came over to my booth, I had them try on glasses with vaslin on them and have them put on dish washing gloves and button a shirt. All of them could do it but what I pointed out to them is how much concentration and time it takes with the gloves on to button the shirt. But overall I must say that what all of you wrote was everyone's favorite part! Everyone that came up to my booth sat there and read each entry and where amazed at what was written. I got a lot of people that turned to me and said "I kinda knew what MS was but I didn't realise...." They all loved that time was taken to respond to my post and that REAL people were giving information instead of the normal, read off a paper from the internet. I appreciate all ideas and having you share a part of your life with me. Thank you so much!

-Elissa Berg

Aw, Cyn! That is great! I am so glad things worked out well for her and that others learned from what we posted. Thank you for sharing her note.:hug:

That's too awesome!!! I'm glad her project was such a success, and her kind words are truly appreciated in her note to this group. :grouphug:

when i'm asked what is MS i usually say that it's a non curable, progressive neurological disease which means it affects the brain and spinal cord.

it's important that folks know that MS presents very differently from person to person. MS destroys nerve pathways and since nerves affect everything in the body symptoms can be very different.

i think it's important that people know how MS can cause pain, eye problems, of course mobility problems, heat intolerance, cognition/memory and overwhelming fatigue.

good luck with your class. thanks for doing this.

oh, i'm too late.
glad it went well.