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.