Monday, August 30, 2010

What we have here is a failure to communicate

Have you ever had a thought in your head but you couldn't quite say it with your mouth? Or talking to someone and then your mind suddenly goes blank? I know I have. Communication is very important to society, it could even mean life or death in some situations. How else would a mother know to feed her baby or know when it is sick unless it cries, even babies know how to communicate even before they say their first word.

 So what does communication have to do with MS? More than half of MS patients have some form of cognitive dysfunction, whether it be short term memory loss, speech difficulties, concentration, slowed response, or trouble with problem solving. Why does this happen? I thought MS just made people use wheel chairs? That's not entirely true. In MS, your immune system damages the insulated coating of nerves. Much like a cable that is exposed on a lamp, trying to turn it on might not always work. Without proper communication from your brain to your other body parts, they have a tendency to not fully operate efficiently. Because your brain controls everything, MS can even affect you mentally.

Cognitive impairment, along with fatigue and imbalance, is one of my major symptoms. I constantly forget things but what I have trouble with the most is speech and concentration. My vocabulary has been greatly affected by MS, it feels as though my mental thesaurus has been ripped in half. I constantly have trouble finding the right words to say. Also if I get interrupted I forget what I was saying.Sometimes the more I say the harder it is to speak. I will say a big word to explain what I'm trying to say other than speaking several smaller words, which makes me fumble my speech. The best way I've found to speak or get my message across is to use analogies. I actually spent 10 minutes just now to think of the word "analogies!

 I can't think on the fly, chances are my blogs take me an hour to write. Whenever people ask me things on the spot I often go blank. When it comes to explanations I'm the worst at it, bless the poor soul who will ask me for directions anywhere. If you want complicated directions and a good chance to get lost then by all means ask me! That is why I can't work on anyone's computer over the phone, I have to be right there in person or else I can't tell someone how to fix anything. I also get paid more if I make a house call too!

Communication is very important in a relationship. My family is aware of my cognitive impairments so I appreciate that they are so patient with me when I speak. If anyone understands me more its my girlfriend, Darla. Since she has MS as well, she has a deeper understanding of the disease. We have a system that every time I'm having trouble speaking I squeeze her hand to let her know whats happening.

If you have trouble with speech try to find new ways to communicate like using body language or  simply writing things down on paper. One trick I used before seeing my neurologist is rehearsing what I need to say in regards to how I feel or to ask them questions. Also there is a new trend of exercising your brain by playing  a game for MS patients. There are many online, just go to and search "multiple sclerosis games". here is one that I use

Thursday, August 26, 2010

MS is like kryptonite to us Supermen

I heard so many times about MS being a "woman's disease." Sure, mostly women get diagnosed with MS but guys aren't impervious to it. So why do women get it more than men? No one is sure why but one theory has to do with hormones. The fact that women get MS more than men 3 to 1 is one of the things that makes me feel less of a man.

A famous author once said  "A woman simply is, but a man must become". What does that mean? It's talking about masculine psychology. There are roles that a male must play in order to feel manly or masculine. If someone tells a guy to "be a man" they are telling him to be strong, tough, assertive, and independent. Without these qualities one might not feel like much of a man. Its not self pity, its tied more into psychoanalytical tradition.  We are taught from early boyhood to not cry, to not fear, to be strong, to be the provider, the breadwinner, king of the castle. So what happens when a guy who is taught the ways of being a man suddenly be diagnosed with a disease that hinders all these expectations? He will begin a reevaluation of his masculinity.

It's hard to be a man when you are being pushed in a wheelchair. It's hard to be a man when someone has to drive your vehicle for you. It's hard to be a man when you are on a low income due to disability and a girl buys your food. It's hard to be a man when you ask for help for simple things. There are times where a guy with MS will get frustrated and upset that he breaks down. When he can no longer change a tire because he is too heat sensitive and loses his strength. Or mow a yard or change oil or open jars. There are so many situations and tasks that requires a man's touch that a guy with MS can no longer do.

Sexual dysfunction caused by MS can make you feel even less of a man. Everything from not getting it up to not being in the mood. A number of factors can hinder a man's sexual appetite. Performance anxiety, fatigue, cramps, pain, disinterest, stress etc... It feels like the stars and planets must be aligned and in harmony for the ability to give intimacy. It's very disheartening sometimes for a man to reject his lover because of a disease manipulating his libido.

Multiple Sclerosis to a masculine guy is like kryptonite to Superman. It makes us feel weak and vulnerable.

Tuesday, August 17, 2010

Ignorance vs. high expectations

Its pretty obvious that not everybody knows what Multiple Sclerosis is. I didn't even know what it was before I was diagnosed, and my aunt had it. Everybody knows someone who has it, but not many know what it is. Its not their fault, they simply just don't know. Everyone isn't obliged to know what every disease in the world is. I used to get angry when people were clueless about MS, but I was being a hypocrite because I didn't know or care about other diseases. I was selfish for my own disease. My expectations were too high for the general public. One of my goals in life is to promote as much awareness and education I can about Multiple Sclerosis. Its a lot easier than just expecting everyone to know what it is through osmosis.

Teachers don't simply just give students a test without at least teaching them the basics  of that subject. So we shouldn't judge people's intelligence for random things that aren't relevant to them. The fault lies upon lack of education or exposure on our part. Yes, I said it, it is our responsibility (MS patients) to tell people what MS is. Who better to tell them than those who live with it every day?

 I've talked to some people that complain about how there are no commercials for MS compared to diabetes, heart disease, and even erectile dysfunction. The reason why is because there are more products for those diseases, so there will be more commercials. There are 258 million people worldwide diagnosed with diabetes, dwarfing worldwide cases of MS which is estimated to 2.5 million. My point? MS is rarer than all the "popular" diseases out there.

Moral of this story? Don't set the hurdle too high for people to jump over, or else they will just do the limbo.

Monday, August 16, 2010

I'm what you call a "special case"

So I'm not your typical MS patient. I'm young, a male, and I'm not in a wheelchair. When I was first diagnosed , about 7 years ago, statistics showed for every male diagnosed there are 2 female diagnosed with MS. Now the ratio of women to men is something like 3 or 4 to one. Another statistic is middle aged people are more commonly diagnosed than younger people. So a guy diagnosed at 19 is as rare as a leprechaun riding a unicorn.

I don't currently use a wheelchair or cane, but sometimes when I have a relapse I might have to use them. I have whats called relapsing/remitting multiple sclerosis. That means occasionally I will have an attack and have certain symptoms, and after time passes or I take steroids they go away most of the time. I have symptoms that come and go, and some stay. Everyday I wake up is different. Some days I'm in pain, some days my balance isn't great, and sometimes I'm disoriented or dizzy. It's like I wake up and have Pat Sajak spin the wheel of misfortune, and Vanna White turns letters to show how I'll be feeling that day. Most of the time I just have little problems that are just tedious and annoying, and some times I feel great.

Most of my symptoms are invisible. My most common every day symptoms are fatigue and cognitive impairments. What are cognitive impairments? Anything that has to do with forgetfulness, concentration difficulty,  confusion, disorientation, disorganization, and indecision. I experience most if not all of those every day. People get mad at me when I forget certain details, or if I repeat myself, or if I don't pay attention when they are talking. I get so down because I can't help it and they don't understand.

As far as fatigue goes, it depends on a number of factors. I randomly just feel that way sometimes, even if I haven't done anything labor intensive or had a good night's sleep. I told my friend I was tired that day and he asked what I did that day, and I said "Absolutely nothing". Heat also makes me fatigued. Normally I just stay at home but if I have to do things in the heat I have to wear a cooling vest. Stress also makes me fatigued.

I have one of those handicap parking placards and I only use it if I'm relapsing, most of the time I get the far parking spot because I like to walk. But when I have to use it, I hate it. Not because of shame, but the way I look. Before I was diagnosed, if I saw some younger guy park in handicap parking that didn't seem to have anything wrong and wasn't picking up a handicap person I would have been disgusted. Since having this disease I learned that you can't judge a book by its cover.

Friday, August 13, 2010

You might have MS if...

...your leg spasms and you think its your phone vibrating. noon you're ready to sleep another 8 hours. forget to write notes so you won't forget other stuff.
...your face is numb even before you drink a beer.'re dizzy just by sitting at a bench at an amusement park. pay a bill and forgot you already paid it. actually look forward to a cold shower.
...your treatment costs more than your vehicle. have more prescription drugs than the pharmacy.
...your cat uses your leg as a scratch post and you don't notice. have a closer relationship with your nurses than your friends.
...Mississippi isn't the first thing you think of when you see the words MS. need a GPS to find your GPS. are considering learning sign language because its easier than talking. think brain farts could be a legitimate symptom.
...your MRI picture has more spots than a dalmatian with chicken pox. get pulled over and fail the walking test but pass the breath test.
...a slinky can go down stairs faster than you can.

Tuesday, August 10, 2010

The Boy Who Cried MS

So tell me, have you ever been in a place where you were telling the truth but no one believed you? Kinda like the boy who cried wolf but in this story, the boy never lied. 

 Early in my teen years, I experienced changes in my body. Oh sure, puberty does some weird things to you at that age... but not fatigue, memory loss, or bladder problems. In school, I started forgetting my homework and kept falling asleep in class. Those are pretty common things  in high school freshmen right? At least that's what all my teachers and family thought, assuming I was just lazy and apathetic about my grades. 

 MS is one of the most misunderstood diseases out there. MS is often referred to as an "invisible disease". Meaning just because you don't see it, doesn't mean it's not there. Some if not all MS patients, or "MSers" as I call them, are different. Some have vision problems and some have 20/20 vision. Some use a wheelchair, and some can run a city marathon. The fact is everyone has been around someone who has MS, its just you never know by looking at them. Without physical evidence, it is hard for other people to believe someone has MS.

 On Sunday morning in February of 2003 I was at a past girlfriend's church. I was sitting in one of the pews near the front with her sitting beside me. A man stood up behind me to speak. I turned around to look at him when I noticed he was blurry. I haven't woken up that early in a long time and figured I had sleep dust in my eyes still. But I noticed that when I looked at my girlfriend, my vision wasn't blurry. When I drove home that afternoon I noticed every time I looked left my vision was blurry.

 Concerned about my vision, I visited an optometrist. At first he thought I had diabetes, but a blood test proved that false. From there I went to an ophthalmologist and he said I had optic neuritis. Optic neuritis is a common symptom that shows up as a first sign that an individual has Multiple Sclerosis. Soon I was sent to a neurologist to get checked out. An MRI and lumbar puncture later, I was diagnosed with Multiple Sclerosis on March 3rd, 2003 at the age of 19. Finally, after all those years of crying wolf, I had evidence. And here it is.