For many of us in the world of MS, our families are the unsung heroes in our lives. While us MSers do our best to act appropriately around others, there are times that our behavior is a little “left of center.”

One time I was sitting in the kitchen with my wife and daughter. My wife asked if I knew when I had to pick up the kids.

“Yes,” I replied. “I have to pick them up on Thursday.” My wife frowned and then corrected me.

“No,” she said. “You have to pick them up on Thursday.”

“That’s what I said!” was my reply. My wife and daughter looked at each other.

“No,” she said. “You said Wednesday.” I didn’t say Wednesday, I thought to myself. Then I turned to my daughter.

“What did I say?” I asked.

“You said Wednesday, Dad.”

Wow, I thought. I would have bet the ranch, the cows and every stalk of corn I owned that I said Thursday.

To further demonstrate the challenges that family and close friends have to deal with when working with us MSers, I submit the following. It is a piece that my daughter wrote for her college application essay. It not only mentions things that are hard for a non-MSer to understand, it also shows how keeping kids involved with the world of an MSer has the ability to help them become stronger people.

My Dad – by Abigail R. Macaluso

My Dad, Dr. Vincent Macaluso, was the alumnus speaker at my middle school graduation. People still talk about his speech three years later. He began by noting that my class never learned about the human brain in science class. This concerned him, since he is a neurologist specializing in multiple sclerosis (MS). In fact, he just published his first book: Multiple Sclerosis from Both Sides of the Desk: Two Views of MS Through One Set of Eyes. You see, he’s had MS for 29 years.

He declared, “Graduands, in the next four minutes I will teach you about the brain. There will be one quiz, one lab, and a final!” So, he taught us about the brain, the mind, and nerves, using posters and diagrams. Our “final” had just one question, a take-home. We had to ask ourselves everyday, “Whom did I help today?”

Standing on stage next to him as he spoke was one of my proudest moments. What an inspiration to see him extol his passions and exhort my classmates to help others. He has instilled in me the hope that no matter what the challenge, I can become a better person. His example has enabled me to grow in unanticipated ways—strength, patience, and compassion. I am the woman I am today because of him.

I will always be proud of my father, but sometimes others don’t understand him as I do because MS impairs his neurocognitive function. I don’t care what others think. Some become afraid when they learn that Dad has MS. They don’t understand what it is and how it affects him. Living with him all these years, has given me insight into MS and I now see that my support helps him manage his life.

We’ve worked together on many projects. He is extremely geeky and creative, with a terrific sense of humor. We once went to Michael’s craft store for materials to make a model triceratops for my kindergarten project. We also created a 3D model of a Basophil Granulocyte (white blood cell), which my science teacher still keeps in his classroom. I also helped him display his brain diagrams that graduation day. Sometimes it’s hard for Dad to communicate his thoughts, so I worked with him to get the order of those illustrations correct. Working with him over the years has made me much more understanding of and patient with others.

MS affects the brain in strange ways. Dad is very sensitive to loud noises. When my brother, Vincent, and I were younger, we would shout across the house to each other and it hurt Dad’s ears. I had no idea that “normal” sounds could be so painful to someone with MS. Heat is also a problem for him, so as soon as it warms up in spring, our air conditioning is on full blast. We freeze, but he’s comfortable. Vincent and I would help our Mom administer Dad’s medication. We’d disinfect the skin where Mom would make the injection and then apply a Band-Aid for protection.

I mentioned my Dad’s sense of humor. It has taught me to see the lighter side of many “heavy” situations. I’ll always remember our Disney cruise, where a ventriloquist entertainer chose Dad to be one of her “dummies.” Dad played along perfectly, even when the ventriloquist gave him the voice of a squealing little girl. He just obediently moved his mouth and the crowd laughed hysterically. After the performance, one enthusiastic “fan” even asked Dad to autograph his arm!

Thus, my background of having lived with my Dad and his MS has contributed a significant part to my identity, and made me who I am and how I think about things. If I can live my life half as well as he has, it will be an overwhelming success, especially since I now know what a “graduand” is.

By the way, she got into and just started college.

I didn’t know how expensive college was going to be.

Now I’m putting the ranch, the cows and every stalk of corn that I own up on eBay.

    Mercedes, Dr. Vincent, Nurse Liz and Donna

It’s the Macaluso Infusion Center’s

 10th Anniversary!

For anyone who has multiple sclerosis and currently takes Tysabri, I’m proud to announce that the Macaluso Infusion Center is celebrating its 10^th anniversary having done over 5,700 infusions! Personally, I have been on Tysabri for 10 years (which was one of the reasons I started the center) and I really enjoy being able to get my medication while other MSers are around. Our infusion room has five comfy infusion chairs along with a television and free WIFI. This generates a relaxed, family-like environment.

And we are like a family. When you arrive, you will be greeted by either Donna or Mercedes. These are the two people who have been working with my MS patients since we opened ten years ago. After being registered, you can wait in our homey waiting room where you can read, talk or watch TV.  Once your infusion chair is ready, Donna or Mercedes will check your vital signs and then hand you over to our outstanding infusion nurse, Elizabeth. Liz has extensive experience as a nurse and as an infusion specialist. Her calm and happy demeanor makes her the type of person you can trust which can help you relax while getting your medication.

After the infusion has started, some patients enjoy talking with other MSers, others prefer to read, write or get their work done and some just put on a pair of headphones and kick back for the hour that the medication is infused.

Some of the people who get their infusions done here like knowing that we only infuse people who get intravenous medication for multiple sclerosis. Other people like the smaller scale, comfortable environment that we provide.

Among the MS patients who previously had their infusions done at larger, often hospital-based infusion centers, they were treated not so much as people but more like “the next one in line.” All the patients I have spoken with are unanimous in saying that our infusion center is the best experience that they have had.

So if you are looking for a nice place to get your Tysabri infusion done, you can come and visit our center during our business hours (Monday, Tuesday, Thursday, Friday – 9am-5pm, Wednesday – noon to 8pm.) or give us a call (516-498-2300) and we can chat.

Hope to see you soon!

Dr. Vincent

Macaluso Medical Infusion Room

The waiting room at Macaluso Medical.

How blessed am I?

How blessed am I?

Well I’ll tell you.

I’m incredibly blessed to have MS and a medical degree.

I’m blessed because I get to celebrate twice when a new medication comes out for MS. When I celebrate as a patient, I feel like, “Cool, another medication that might help to slow down my MS even better than my current medication does!”

Plus, and here is the really great part, as a physician I feel like, “Excellent, now I have another weapon to use to help slow down MS for my patients!”

So, it’s like, “Yeah for me” PLUS “Yeah for the 300 other MSers that I take care of.”

That means that I get to feel “Yeah-good” 300 times more potently than if only I had the MS.

How blessed am I?

To go one step further, I calculated the chance that I could become a doctor AND get MS.

First, the chance that I could become a doctor:

583,629 (number of MDs in 1994 when I graduated med school)

249,600,000 (US population in 1994 when I graduated med school)

= 0.002 chance that I become a doctor

Second, the chance that I could get MS:

400,000 (MS population in the US)

324,238,436 (US population)

= 0.0012 chance that I get MS

Therefore…

The chance of getting both MS and a medical degree:

0.002 × 0.0012 = 0.0000024

Now change the decimal to a fraction:

0.0000024 = 24/10,000,000

Now simplify the fraction:

24/10,000,000 = 1/416,667

To give you an idea of what a 1/416,667 chance is, here are a few things with similar odds:

• Death by Tsunami
• Asteroid hitting the earth
• Yearly chance of getting hit by lightening

How blessed am I?

I have a great wife, daughter and son who I care for and who care for me.

How blessed am I?

I have a roof over my head and air conditioning inside.

How blessed am I?

I have lawn mower that starts after two or three pulls most of the time.

How could I be more blessed?

If all mathematicians / statisticians who read this don’t give me crap for the way I calculated the chance that I got both MS and a medical degree.

Blessings to you!

An excerpt from

“My Life with You”

from

Multiple Sclerosis From Both Sides of the Desk

Maddy pushed back from the table and stood up holding onto the Danish. “Well, thank you for the food,” Maddy said as she placed the remaining pastry in her mouth. “I’ll let you know when the play is, and I’ll text you Dr. Ng’s phone number.” She picked up her teacup, emptied it, and then replaced it. “Love ya, darling!” she quipped with a smile and a wink, turning and starting her quick waddle out of the dining room.

Sam turned her attention back to the table. She looked at a leftover fragment of biscuit sitting in a pool of syrup where the once proud mountain of food had stood. “If I knew she was bulking up for a play called Obesity, I don’t know if I would have invited her to breakfast,” she said under her breath as she started putting the napkins and silverware on the trays. While gathering the items, she sensed some people walking up to her table.

“Hey, Sam!” Charlie said brightly. Sam looked up and saw Charlie along the side of the table. “How are you doing?”

She noticed him reflexively lean into the table for a kiss but then stop. Sam thought about the agreement they had made when she brought up the idea that they might not want to see each other anymore on a girlfriend-boyfriend level since graduation was approaching. She had been somewhat surprised by Charlie’s acquiescence.

“I’m doing pretty well,” she said, smiling. “And you?”

“Not bad,” Charlie replied, maintaining a happy tone. “I saw you eating with Madeline. Where did she go?”

“She had to go see a teacher about something,” Sam said, allowing Charlie to redirect the conversation, which, after a pause, he did.

“I’d like you to meet a friend of mine. This is Kerry,” he said as an attractive girl emerged from behind him, the top of her head slightly above the level of Charlie’s left shoulder. “Kerry, this is Sam—the good friend I was telling you about.”

Sam stood and put out her hand to the fair-skinned, hazel-eyed girl. She had a high forehead and blond hair, fixed with a barrette in the back. She wore no makeup but had a pair of silver, drop earrings that led to an unadorned neckline. Her thick, dark blue sweater, not one of Charlie’s, had large, white snowflakes on it. It loosely followed a healthy shape and hung slightly below the belt line of her jeans. She wore jeans that fit but did not hug her hips. The cuffs of her jeans covered the laces of her brown boots, which were shiny but had some scuffing.

“Nice to meet you,” Sam said in an even tone.

“Nice to meet you as well,” Kerry replied. Sam noticed a smile on the young girl’s face, along with a hint of worry in her eyes. “Charlie has told me a lot about you.” Sam looked at Charlie.

“I had to tell her how you were on your way to adding to the great tapestry of American authors.” Sam nodded. “Kerry’s taking that course you took with Professor Goofy Face—Letters about Literature or something?”

“Do you mean All About Alliteration in Literature with Dr. Geoffrey Faise?” Sam asked, turning to look at Kerry. “It was a fun course. Pretty easy. What are you majoring in?”

“I like writing,” Kerry began, vigorously nodding her head. “Unfortunately, my dad wants me to get a degree in business.”

Sam frowned. “That’s a shame,” she said.

“Well, it’s so I can help out with the farm back home after graduation, managing the books and whatnot,” she added, shrugging her shoulders.

“Ah,” Sam replied, realizing that Kerry was more boots and jeans than jeans with boots. “What are you two doing now?” she asked.

“Well,” Charlie began, “Kerry’s mom was just diagnosed with MS. I was wondering if she could speak with you for a little bit.”

“Sure,” Sam said. “Anybody who has Goofy Face and MS in their life deserves as much help as possible.” A smile crept over her face as she realized the different ways of interpreting what she had just said.

“Do you want to go downstairs for coffee and chat?” Charlie said.

Sam looked at Charlie. “Chat?” Sam asked, slightly taken aback. “Are you running a knitting club or did your grandmother leave you her trendy phrases book in her will?”

Charlie started to laugh.

“I’m sorry,” he said. “Would you like to go and talk about current topics in an informal fashion?” he offered.

“Sure,” Sam replied, looking at Kerry.

“That would be great,” Kerry said, with some of the anxiety leaving her face.

“Super,” Charlie said, smiling. “Besides, you know my grandmother, and she curses like a sailor.” He turned to Kerry. “Give me your card, and I’ll get vouchers from the cashier since we didn’t eat anything.” Kerry took her card out and handed it to Charlie. Their hands didn’t touch. Sam noticed.

“Thanks,” she said. As Charlie walked away, Kerry helped Sam finish gathering the plates and silverware onto the trays. They walked over to the garbage and tray-return belt together.

“Have you known Charlie for a long time?” Sam asked.

“Oh no,” Kerry answered quickly. “Charlie and I just met this week in class.”

“Oh,” Sam said, with mild surprise in her voice. After placing the trays on the belt, they walked with Charlie out of the dining hall and into the dimly lit hallway.

***

“So what’s the story with Kerry,” Sam initiated as she and Charlie found a table for three in the student-run coffeehouse. Kerry had gone to the restroom.

“None really,” Charlie replied. “She’s a nice girl I met in an econ class we have together.” He put his bag down next to the seat facing the wall and then pulled out one of the other seats for Sam. “We sat next to each other and just started talking,” he continued as Sam sat down, placing her bag under the table.

“She seems nice,” Sam started. Charlie pulled the other seat out slightly before he sat down in his seat. “Have you gone out on a date yet?” she asked.

Charlie looked at Sam, mildly bemused. “With Kerry or with anyone?” he asked, drawing out the question.

“Either or,” Sam said, nonchalantly.

Charlie sat back and looked up toward the corner of the room. He started mouthing random names, keeping track of the number with his fingers, first on his left hand and then on his right. “Do twins count as one or two dates?” he asked cautiously.

“If they were at the same time, one,” Sam answered, coolly.

Charlie pulled one of his fingers back down. He counted the fingers and then looked at Sam.

“No;’ he answered as he interlaced his fingers and placed them, clasped, on the table. “How about you?”

“No dates,” she replied, sounding neither happy nor sad.

“How’s the MS going?” he asked in a similar fashion.

Sam’s head and shoulders drooped slightly. “Crummy,” she began. “My leg has been getting worse.”

“Are you still taking medication?” Charlie said, leaning into the table slightly.

“Nah. It made me feel like crap.” Sam saw Kerry wandering around looking for them. “Hey, Kerry!” Sam called out while waving her hand. Kerry turned and came over to the table. Charlie pushed the third seat out a little further.

“Would you like me to get the coffees?” Kerry asked while standing.

“Nonsense,” Charlie said, rising from his chair. “I’ll be the waiter for the day. What’ll it be, ladies?”

“Small coffee with cream for me,” Kerry said.

“Black for me,” said Sam.

“What size?” Charlie asked as he started to back away from the table.

“If they have a hose that you can run over to the table and jam down my throat, it would be a start.”

“One MegaGrossoCaffeineSlam coming up,” he said, moving toward the coffee area with a bounce in his step. Watching him move sparked something inside of Sam as she turned to look at Kerry.

“Thanks for taking the time to speak with me,” Kerry said, without pause. “Charlie has been talking about you all week. Ever since I met him on Monday, he’s been like, ‘I want you to meet Sam. She’s great!”

“When did you tell him about your mom being diagnosed with MS?” Sam asked.

“I think it was on Thursday in economics class,” Kerry replied, after a moment.

“Healthcare was the topic?” Sam said, trying to make the connection.

“Nah,” Kerry said. “Class was boring. It was about international econometrics or something. I was bored and started looking around. Charlie’s book bag was on the floor, and the flap was open, and I saw he had a book about multiple sclerosis.” Sam knit her eyebrows slightly. “I asked him about it after class, and he said he had a very good friend who had it.”

“Did he say that I was the friend who had it?” Sam asked.

“I didn’t know you were the one he was talking about until I met you upstairs.”

Sam paused momentarily, putting together the sequence in her mind. She then looked back at Kerry. “Tell me about your mom,” Sam said.

Kerry took a deep breath and began talking. “She was diagnosed just before Christmas, over break. When I got home at the beginning of December, she was having trouble seeing out of her right eye.” Kerry’s right eye squinted a little as she pointed to it. “She said it was painful, which I thought was weird because my mom never complains of pain. I knew something was up, and I was able to convince her to go see her doctor.” Kerry paused, looking down at the sugar bowl on the table.

During the pause, Sam thought back to her trip to the doctor with her mother and brother. “Did you go with her?” Sam asked.

“Yeah,” Kerry said. “We’re pretty close. We went together, and the first doctor said he wanted to send her to a neurologist up at the university, but they didn’t have anyone available to see her until February, so he sent her to a local neurologist.”

“How did that go?” Sam asked, watching the corners of Kerry’s eyes start to droop, ever so slightly.

“He was very nice,” she said as if she were reporting the weather. “He did an examination and told us that it might be MS.” Kerry’s voice cracked a little, and her eyes reddened.

“Did he say it might be anything else?” Sam asked.

“Yeah, but they were all things I had never heard of before and had long names.” She shrugged her shoulders and shook her head. “He sent her to get an MRI and some blood work.”

“How was your mother feeling?”

“I think she was okay, but she’s always been quiet and doesn’t let on about her emotions much,” she replied, folding her arms across her belly, holding her elbows. “I drove her to the tests.”

“How were you feeling?” Sam asked. “That must have been a lot to throw on you.”

“I don’t really know. Things were moving along so quickly, I don’t think I had time to think about it.” Sam nodded. “So,” Kerry continued, “we went for follow-up on Christmas Eve. He showed us the MRI of her brain and pointed out white spots . . .“ Kerry’s voice trailed off at the end of the sentence as she began to cry.

Sam took some napkins from the dispenser and gave them to Kerry. She took them without lifting her head. Several students at a table a few feet away had turned their heads to look at Kerry. Sam, casually repositioning herself provided some privacy for her new friend. After a few moments, Kerry dried her eyes and blew her nose. “I’m sorry. I guess I’ve got so many emotions running around inside of me I don’t know what to deal with first.” She wadded up the napkins and wrapped them with a new one. “It hit us so fast,” she continued, sounding like someone reporting what it feels like when a tornado hits. “It was eye pain. Doctor. MRI. Blam! MS. It came up out of nowhere!” Sam nodded knowingly. “I feel horrible coming back to school, leaving my mom and little brother to look out for each other.”

“Is your dad around?” Sam asked, noticing Charlie paying for the coffee out of the corner of her eye.

“No,” she replied, shaking her head. “He left home after Mom started acting differently.”

Sam’s eyes widened, her attention turning back to Kerry. “When did that start?” she asked.

Kerry looked up toward the ceiling, her eyes moving back and forth as she thought. “I guess about two years ago. He said my mother had changed— that she was acting like a baby.” Kerry played with the ball of napkins in her hands. “I guess it was true. Her emotions were all over the place. She would go from laughing to crying to laughing again at the smallest things. She was acting weird.” She stopped and looked at Sam. “That’s weird, right?”

Sam’s head started to nod slightly but then veered into a noncommittal shake and shoulder shrug. Kerry started listing her mother’s abnormal behaviors while enumerating them with the fingers on her left hand.

“Along with the emotional stuff,” Kerry iterated as she raised her thumb, “she became extremely disorganized and was always forgetting where she put things.” Kerry’s extended index finger made a gun shape pointed at Sam. Sam stared at Kerry’s finger-gun as it rested on the table. “She would start ten different projects and complete none of them,” Kerry continued. Sam watched Kerry’s middle finger extend. “She was always complaining about how tired she was even though she was sleeping all the time.” Kerry’s unadorned ring finger stretched out. Sam became lost in her thoughts. “She also started making some inappropriate comments to people, which she never did before. She started to embarrass us in social situations! It was horrible!” Kerry finished with a loud voice and her open hand rising from the table. Sam continued to stare at the table, thinking about how hard it had been for her during her first year in college. She had noticed her own behavior change but had thought it was a normal part of development—a reaction to leaving home.

“My brother and I sometimes made fun of her as well because she had always done such a great job of being our mom,” Kerry said, slumping in her chair as her hand came back down to the table. Her eyes reddened again. “We thought it would pass,” she said as she took more napkins from the holder. “I thought she was going through menopause or something.” She dabbed her eyes. “One time, she had started making dinner but then remembered that she had to get my brother at school.” Kerry’s voice sped up, growing more anxious. “She took off to get him, but she forgot that she left the stove on!” Kerry threw her hands up in despair.

Sam looked up and winced. “Oooh! Did anything bad happen?” she asked.

“Thankfully, no,” Kerry said, meeting Sam’s eyes.

“Thank God,” Sam said.

“When she got back, there was smoke in the kitchen,” Kerry explained. “She found the charred remains of a few bills that were lying on the counter, which must have caught fire because there was a big black V on the wall next to the stove.”

“But nobody got hurt, right?” Sam asked.

“Yes, but no. There were no physical injuries, but my father couldn’t take it anymore,” Kerry replied. “That’s when he left, saying that he was going to stay with his brother for a while. That was a year ago.”

Sam nodded and then asked, “Have you seen him since?”

“Yeah,” Kerry said, lifelessly. “He comes by every once in a while but never stays for long.”

Sam watched Kerry sink into herself and decided to change the conversation’s course. “Did your mom get steroids for her eye?” she asked.

“Well,” Kerry started, “the doctor gave her something by an IV.” She stared at the table. “I can’t remember the name of it.” She looked up at Sam. “I remember that it was a long word.”

“Probably methylprednisolone,” Sam replied, remembering her week in the hospital during winter break three years ago.

“Yes. That was it,” Kerry said, smiling. “For five days. She gained some weight, but her eyesight was getting better by the time I left to come back to school.”

“That’s good,” Sam chirped. “Did he mention that she needed to start a disease-modifying drug?”

“A what?” Kerry asked. Just then, Charlie, walking slowly, arrived at the table. He carried two cups in a cardboard tray and what appeared to be a small garbage pail with a lid, balanced in the other. He placed the cardboard tray on the edge of the table and Sam’s coffee in the middle.

“Why did you put it so far away from me?” Sam asked.

“That thing is so heavy,” he moaned. “If I put it too close to the edge, the whole table could go over.” Sam stared at him as she pulled the MegaGrosso cup closer. Charlie gave Kerry her coffee and then took his from the holder. Sam looked at Charlie’s cup, noticing the vast array of powders and foams in the cup. She looked at Kerry, motioning toward Charlie’s cup. Kerry looked and then shrugged. Sam turned to Charlie.

“What’s that?” Sam asked, pointing at Charlie’s cup.

“That, my friend, is a Double-Whip ChocoFrap CinneCrumble with Maple Spice. It’s their winter special,” he replied, sounding like a car salesman. Sam lifted her cauldron of hot black coffee, took a slug, picked up a napkin, wiped her mouth, and looked to Charlie.

“If I might be so bold she began.

“Please do,” Charlie replied.

“Thank you,” she said, taking a pregnant pause. “Exactly when and where did you lose your balls?”

Kerry choked on her coffee as a smile crept across Charlie’s face.

“Well, while I appreciate your interest, I don’t know if I can answer that directly,” he began, standing straight and assuming a professorial demeanor. “While waiting in line, I had time to reflect upon the fleeting nature of life. Considering that the human life is but an infinitesimal blip on the timeline of the universe, I concluded that breaking habit and taking calculated risks would be a better way to spend my parcel of time.” He looked back and forth at the two ladies sitting at the table before him. They nodded. “To that end, I have decided to become a dilettante, at least for the rest of my college career. New experiences are my goal. Each decision I make is another chance to achieve another goal. As of now, I have had enough black coffee. I need something different.” Charlie motioned to his whipped, chocolate smacked, cinnamon-coated, maple-punched drink and said, “Quod erat demonstrandum.” Sam and Kerry gave a quiet, mini-applause as he sat down and rested his chin on his hands. “So what are you two gals chatting about?”

“Kerry was just telling me about her mom.”

“Oh. How’s she doing?”

“She responded to the steroids that she got, but now she has to decide which disease-modifying therapy to start.” Sam turned back to Kerry. “Those are the medications that can slow down her disease.”

“Why can’t she just take the steroids when something comes up?” Charlie asked as he took a sip of his life-affirming drink. The foam left a mustache on his upper lip.

“You can’t live off of steroids,” Sam began. “They cause bone loss. They also make your body hold onto salt, and wherever salt goes, water follows.” Sam motioned to Charlie to wipe his upper lip.

“I’m saving it for later,” he replied, smiling. Sam handed him a napkin, which he accepted and used. “Some people,” he chided, shaking his head.

Sam, ignoring Charlie, turned back to Kerry. “Because of that, you have to follow a low-salt diet or else you wind up gaining weight,” Sam said.

Kerry cringed slightly. “Have you ever taken them?” she asked.

“I had ‘em three years ago. They got me revved up, and I had to take a sleeping pill to fall asleep when I was on them.”

“Did they make you sick?”

“No more than I did,” Charlie chimed in. Sam stared at him. He quickly put his cup to his mouth and held it there until Sam turned back to Kerry.

“No. They gave me a whole bunch of energy, and my leg got better. They’re good to handle an attack, but they don’t change the overall course of the disease.”

“The doctor gave us some binders about different medications,” Kerry said, “but my mom didn’t read them.”

“Did you take a look at them?” Sam asked. Kerry shook her head. Sam remembered how overwhelmed she had felt when she was first diagnosed. “Did he spend any time telling you about the medications?”

“A bit, but not really,” Kerry admitted, looking down at her coffee cup. “I like writing. I was never a science person.”

“Me neither,” Charlie said. “I think a lot of doctors forget that,” he said, looking at Sam.

Sam nodded at Charlie and then looked at Kerry. “It’s the doctor’s responsibility to educate you and your mom about the medications,” Sam said to Kerry. “If the doctor can’t do it, he should have another medical professional around that you could speak with.”

“He was busy but said that after reading the stuff he gave us, we could discuss them at follow-up,” Kerry replied, encouragingly.

“That’s good,” Sam said. “So now you have to do your homework.”

“But how do we know which one’s going to be the best for my mother?” Kerry asked.

“It comes down to what your mother and her doctor decide to start with,” Sam counseled. “Treating your mom’s MS is a personal, daily activity. If one drug doesn’t work, there are a whole bunch of other treatments to try.”

“What do you mean ‘your mom’s MS’?” Kerry asked, with concern in her voice. “Isn’t MS one disease?”

“Everybody with MS has demyelination in the brain and spinal cord,” Sam started, “but how the disease affects each person’s life is different. It’s important that you and your mom and your brother stay close to each other and work with her doctor.”

“It sounds confusing,” Kerry stated, shifting in her seat with her hands around her coffee cup. “I’m nervous, and I don’t even have the disease. I can only imagine how my mom feels.”

Sam saw disquiet in Kerry’s face. Sam decided to take another tack. “Here’s another way to look at it,” she said, leaning into the table. “There were no drugs available to slow down the course of MS until the early nineties. Now we have at least eight drugs available with many more coming,” she said, becoming more animated as she spoke. “I like to think of it as a dynamic situation. People who were diagnosed with this disease before 1990 had nothing to look forward to like we have now,” she continued, leaning in further. “It’s up to us with MS to keep on top of our disease.” Sam felt herself believing the words she was saying. “We need to do our research using reliable sources. We need to learn as much as we can about MS. And if we can’t do it ourselves, we have to learn how to ask for help.”

Kerry slowly nodded as Sam finished her address.

“And that goes for those of us who are around people with MS as well,” Charlie added. Sam and Kerry both turned to Charlie, who looked only at Sam. Sam saw a wide-eyed, innocent look on Charlie’s face. It reminded her of how he looked when she first met him. She turned back to Kerry.

“He’s right,” Sam stated. “And there are a lot of great resources out there. The first thing I would recommend for you and your mom and your brother and your scared father to do is go to the National Multiple Sclerosis Society website. They have almost everything there to help you and your family and your friends start to take control of the MS that’s now in your lives.”

After a moment of silence, Charlie turned to Sam. “You said almost everything. What’s missing?”

Sam turned from Kerry and locked in on Charlie.

“A cure,” she said.

Charlie held Sam’s gaze. Sam began to feel his presence. Slowly scanning, she appreciated auburn eyes that were deeper and cheekbones more defined. In his silence, Charlie’s quiet visage conveyed a comforting image to Sam. She then saw the corners of his mouth start to rise and turn into a smile.

“So, other than that Aceso,” he asked, “it’s a good site?”

“Yes,” Sam replied, releasing his gaze. “It’s an excellent site,” she continued as her brain downshifted and came back to the table. “And thank you for the deification.”

Kerry looked back and forth between Sam and Charlie. “Are we still talking about MS here?” she asked.

“I’m sorry,” Charlie said. “It’s an inside joke.” He looked at Sam and back at Kerry. “Sam and I took a Greek mythology class together in sophomore year. Aceso was a daughter of Asclepius—the god of medicine.”

“Aceso was the goddess of the healing process,” Sam clarified. “She was the lesser known sister of Aphrodite.”

“I still say she was waaaaaay hotter than her sister,” Charlie insisted.

“They were really only half sisters,” Sam said, looking at Kerry. “Aphrodite arose from the sea foam after Cronus cut off Uranus’s genitals and threw them into the sea.” Sam paused, thought for a second, and then pointed at Charlie. “Hey!” she exclaimed.

“No,” Charlie said, cutting her off. “I already looked. They’re not there.” Sam shrugged and turned back to Kerry.

“The most important thing to remember is that the sooner a person gets started on a therapy, the better they do in the long run.” Kerry nodded. She took a deep breath and let it out slowly.

“At least I’ve got a starting point now.”

“What’s that?” Sam asked.

“I’m going to call my mom and discuss what you just said with her. The way you put it makes it sound like the more involved we get, the better things will be.”

Sam smiled. “That’s right,” she said. “The more involved you are, the better.”

“My mom’s doctor said the same thing,” Kerry said. “We need to be proactive.”

“That’s great!” Sam said. “My first doc was so-so.” She looked at Charlie.

“Maybe we—I mean—you could find a new one,” Charlie suggested.

Sam’s mind quickly processed everything she had learned over the past hour. Kerry and her family were entering into a new part of their lives. She knew they would do well as long as they stayed together. She realized that she needed to listen to herself and get back on a medication. She was starting to see Charlie in a new light.

“Sam?” said Kerry.

“I’m sorry,” she replied as she looked back at Kerry. “I just made some connections in my head.”

Kerry waved her hands. “Please don’t apologize! You’ve been wonderful! I have to get to class now, but I want to thank you so much for your kindness and your help. Can I get your cell in case I need to ask any other questions?”

“Of course,” Sam said, and gave her the number. “Call me so I have yours.”

“My pleasure,” replied Kerry, with a smile, picking up her bag and waving to Charlie. “See ya later.” Sam and Charlie waved as Kerry disappeared into a thicket of students.

The coffeehouse was getting crowded. Charlie had started to gather up the coffee cups and napkins. Holding the sides of her vat of coffee, Sam sat back and looked at Charlie.

“Why do you have a book on MS?” Sam asked.

Charlie continued to busy himself bussing the table while answering. “Well, if you must know, given the sparse amount of time I have left on this planet,” he began, “I’ve decided to read every book ever written.” He placed all the items on one of the trays he had used to carry the coffees. “As it stands,” he continued, turning to look at Sam, “I’m almost done with the Ms.”

She took a long look at him before speaking. “It means a lot to me,” she said.

“And you—you mean a lot to me,” Charlie said, closing the loop.

And, for a moment, they sat, in the din of the coffee house, in the silence of their company.

The MS ICE CUBe

In many ways, the inflammatory attack in the central nervous system (CNS) of MSers is like a twisted ankle. The main difference between a twisted ankle and an MS brain is that the brain is trapped in a rigid box (called the skull) that is noncompliant (meaning that it cannot stretch like the skin around a twisted ankle). Because of the continuous, low-lying, microscopic, inflammatory, demyelinating disease that is going on in the CNS of MSers, there is a constant, elevated interstitial pressure (pressure within the brain tissue) that has nowhere to go and winds up pushing upon the adjacent, compressible, jellylike nerves in the brain, brain stem, and spinal cord, which causes a significant number of them to not work properly.

Happily though, we do have medications (like disease modifying therapies and steroids) that work on a microscopic level that can reduce this pressure.

THE KEY POINTS TO REMEMBER ARE:

1. MS causes a constant, covert, elevated pressure in interstitial spaces (the spaces between the nerve cells) of the CNS.
2. This elevated intracerebral pressure comes from the WBCs that are demyelinating nerves and the inflammatory fluid that accompanies them in the CNS.
3. Elevated pressure can cause global, as opposed to focal, deficits since it affects the entire CNS.
4. The constant, elevated pressure in the CNS of people with MS causes changes in behavior and cognition that cannot be appreciated just by looking at the MSer. This is the invisible MS. It is potentially reversible with therapies that reduce the elevated interstitial pressure.
5. The constant, elevated pressure in the CNS of people with MS also causes a variable worsening of the visible, physical problems caused by focal demyelination and nerve cell loss.

If a person can accept the idea that elevated interstitial pressure causes a global lesion that worsens nerve functioning, then it becomes a lot easier to understand what has been described, until now, as the “hidden MS.” Symptoms associated with the hidden MS are hidden because they are products of something no one can see—the mind. Our frontal lobes integrate the data that other parts of the brain collect. They get input from almost everywhere else in the brain and then make the decision about what action to take based on the information received. One of the responsibilities of frontal lobe processing is to govern behavior. If a percentage of the nerves in the frontal lobes have stopped working, because of the effects of pressure, temperature, and/or demyelination, then the processor cannot produce the behaviors the way it did before. The symptoms include troubles with:

1. Initiative – trouble getting out of bed or getting off the couch
2. Concentration – trouble with paying attention and staying on task
3. Emotional control – going from laughing to crying to laughing, moment to moment
4. Coital activity – the human sexual response cycle starts with Desire which comes form the frontal lobes
5. Urinary control – the frontal lobes are what automatically inhibit urination when it is not appropriate to urinate (i.e. when you are not in the bathroom)
6. Behavior that is socially appropriate – the “gatekeeper” in our frontal lobes is what stops us from saying things that we are thinking but are not appropriate to say aloud.

These symptoms have been the bane of my time with MS, which has been the majority of my life. I call them the MS ICE CUBe or The MS ICE for short.

You can read more about the causes of and treatments for The MS ICE CUBe in my book Multiple Sclerosis From Both Sides of the Desk .