Macaluso Medical Milestones

We here at MacMed are happy to announce some important goals that we have achieved!

First, we have just celebrated the 7th anniversary at our office at 1575 Hillside Avenue. The office that we designed as a homey environment where we could take care of our patients is still as inviting as it was on opening day!

On the breastfeeding medicine front, Dr. Lauren’s has been as busy as ever! Despite the increased workload, she still takes at least an hour with all of her patients. When people ask what Breastfeeding Medicine is, she describes herself as a “4th trimester physician.” After the baby has been born, ending the third trimester of pregnancy, both mother and baby enter into important and special periods of their lives. For mom, she is facing both physical and emotional challenges that come at this time. The issues that a mom has to deal with, aside from her new baby, include family, work and her own personal well being. Having breastfed both of our children and having been in practice for over a decade, Dr. Lauren knows and understands the importance listening firsthand. For baby, she examines baby from head to toe and checks to see if the baby is achieving appropriate weight goals by reviewing the baby’s pediatrician’s chart. She then weighs the baby before she observes a breastfeeding session with the mother. The baby is weighed again after the feeding to see how much milk was transferred. From there, she forms an assessment of how both mom and baby are doing. Based upon the assessment, a plan is formed to help treat whatever issues are found for both mom and baby. The office visit lasts at least an hour – sometimes more, sometimes less – because it takes time to get to know a new mom on a personal level in order to be able to help her.

From the neurological side of the office, I also take as long as needed in caring for my patients. This is gratifying for me, especially when I get to share the challenging world of multiple sclerosis with another person. Caring for our disease requires a good deal of time. As a doctor, I need to get to know my patient first as a person and then learn what role MS plays in her or his life. I encourage the MSer to bring family members, caregivers or any significant person in her or his life so that we can all work together to form a plan to deal with whatever challenges come up.   The initial office visit runs anywhere from 45 to 90 minutes and sometimes longer!

My book, Multiple Sclerosis From Both Sides of the Desk, has also hit another milestone having sold over 1,200 copies! The feedback that I have received about the book has been gratifying on multiple levels. Most gratifying is being able to explain how and why the disease affects us in ways that can’t be seen, I feel that I have been able to make a large contribution in knocking down the wall that used to be labeled “The Hidden MS.”

Dr. Lauren and I have always believed that in order to take care of a person who has a medical problem, the care begins with communication. And for a doctor, the first part of communication should be listening.

Today, the time spent in face-to-face contact in the world of medicine has become a dear commodity. In larger practices, the bean counters have forced good physicians to turn over more “relative value units” each day.

Dr. Lauren and I don’t turn over units.

We take care of people.

Our bottom line is determined by the care we give to our patients.

If you are, or someone you know is, in need breastfeeding or neurological care, the door to our homey office is open to all!

Multiple Sclerosis From Both Sides of the Desk has hit a milestone!

We’ve received some exciting news here at the home office…

Multiple Sclerosis From Both Sides of the Desk has sold over 1000 copies!

First of all, I want to thank everyone who has purchased the book. From the feedback I have gotten, MSers say that not only did they learn a lot from the book but also feel a little less alone when they read stories from a doctor who has multiple sclerosis and really understands what is going on in our MS minds.

Moreover, the book appears to be having an impact on the people who are around those of us who have multiple sclerosis. Some people have come up to me and said that they liked the book so much that they have bought it for family members and friends. Others have been leaving copies of the book at doctor’s offices and at MRI places in hopes that people who have multiple sclerosis in their lives will pick it up and start learning as well.

Another plus is that the book is being followed by many and has gotten over 1,600 Likes on Facebook. This has been a driving force for me to start the sequel to the book. In the sequel, Sam and Charlie, the characters from the Chapter 15 My Life With You novella, will be returning.  The duo, along with Matilda, her girlfriend and some investigative journalism are going to help show people the challenges and successes that can happen in the lives of two young people who have been affected by MS.

Once again, thank you for your interest and support of my book! I truly believe that when patients and doctors start to learn more about each other, it helps to improve the lines of communication.

Once a dialogue has been opened, that’s when the true healing can start!

VFM

An excerpt from the next Sam and Charlie novel…

Hello all!

For those of you who have read Multiple Sclerosis From Both Sides of the Desk, I’m sure you remember the short love story, My Life with You. If you haven’t, I’ll bring you up to speed.

In the story, My Life with You, the main character, Sam, is a senior in college who wants to be a writer. She has a good friend Matilda, a boyfriend Charlie and multiple sclerosis. The story centers on Sam trying to figure out what she is going to do after the sheltered world of college is over and real life begins. The main issues she deals with are how she is going to handle her multiple sclerosis and how she is going to handle her relationship with Charlie.

The next “Sam and Charlie” novel involves Sam, Charlie, Matilda, her girlfriend, investigative journalism and multiple sclerosis. Here’s a sneak peek…

 

 

sam-and-charlie-picture-ii-copy

An excerpt from the next Sam and Charlie novel…

by Vincent F. Macaluso

“How did you know that you weren’t going to kill that guy?” Charlie asked as he pulled the car past some police cruisers out of the parking lot. Sam turned to look at him.

“I didn’t,” Sam replied flatly. “All I knew was that he had a gun.” Charlie glanced at her and then back at the road. “I also knew that I wasn’t going to let him take you away from me.”

“It was amazing how quickly you acted,” he said.

“When I saw the look on your face, reflexes took over,” she replied. Charlie nodded. They sat in silence as they got on the interstate towards Watkins Glen. Sam turned and looked out the passenger window.  The early spring foliage zoomed by. It was damp and green – just like the t-shirt that the guy at the market had worn. She replayed the scene in her head.

        Sam and Charlie were on the way back from Charlie’s brother’s wedding in Niagara. They had decided to pick up some supplies and have breakfast outdoors before getting back to their apartment. Sam saw a sign for Farmington and decided to get off I-90 to look for a store. After driving up and down several streets she realized the town was still asleep. The only sign of life was a motivated squirrel that ran along a power line. As she turned to get back on the throughway, she spotted a general store that had its lights on. She drove down the street and turned into the parking lot. Two other cars were there. In the front there was a tan Kia with a dent in the front quarter panel and in the back was a weathered, black Dodge Dart that had the windows opened slightly in the back. They entered the store and nodded at the young cashier by the register. Sam went to get some eggs, cheese and juice while Charlie got some vegetation to mix in with the eggs. They reconvened at the check-out counter. Register girl had started to ring up the groceries when Charlie remembered that he had also wanted to get some jalapeños. He excused himself and hurried off. Sam saw a bank of motorized scooters fitted with shopping baskets lined up at the front of the store. She took a seat while waiting for Charlie. The cashier, clothed in a faded red sweatshirt and jeans, started filing her nails. Moments later, a thin, tall twenty-something guy opened the front door. He looked around the nearly vacant store. He saw Sam sitting in the scooter and then he turned to the cashier. The cashier looked up. He asked her if he could take one of the plastic bags that were at the end of the counter. The cashier shrugged like she didn’t care and went back to her nails. Sam noticed the young man’s hand tremble as he reached for the plastic bag rack. His sweaty, green T-shirt, which had several holes in it, clung to his back.  Once he had the bag, he pulled a gun out of his pants and pointed it at the cashier. The young woman behind the register stopped filing her nails and stared at the gun.

“Open the drawer and give me the money,” he said while raising the gun and pointing it at her face. He stuck out his other hand with the bag in it. The girl hit some buttons on the register and the drawer opened. She began to fill the bag with money. Charlie, jalapeños in hand, jogged back up to the checkout counter. The crook turned to face Charlie while pointing the gun at him. Charlie’s face went flat. “Move and I’ll blow your head off,” he said.

As the scene unfolded in front of her, a sense of clarity came over Sam. Fear was gone. An unconscious program started. She slipped her hand into her jacket pocket and felt the smooth handle of her camping knife. Wrapping her fingers around the well worn handle, she slipped the knife out. After the fingers of her hand pressed the butt spring, the fingers on the other hand silently unfolded the blade. She slipped off of the scooter. Her eyes were trained on the ribs that were wrapped with the wet, green t-shirt. Keeping her arm bent and pressed up against her body, she held the blade parallel with the floor and took two quick steps forward. The honed knife penetrated the space between the gunman’s ribs. She threw the rest of her bodyweight onto the knife and twisted the blade vertical. The punk emitted a choked, sucking sound. Falling forward together, she held onto the knife and put her knee in his back. Charlie watched the duo crash to the floor. The gun fell from the guy’s hand and slid across the polished tile floor. Charlie pushed it further away with his foot as he picked up a roll of duct tape from a bin on the counter. He moved around next to Sam and taped the wheezing man’s hands behind his back. Sam pulled herself off the guy and stood. She grimaced as she watched him writhe on the floor. Charlie grabbed some towels from behind the checkout counter, placed them around the wound and then withdrew the knife. He rolled the pale man onto his side and propped him against the counter. Sam stared at the young man who was wheezing. Charlie told the cashier to call 911 and then asked where the bathroom was. He went over to Sam and walked her to the back where the cashier had indicated. When they got to the tiny restroom, he removed Sam’s coat. There was blood on her hand and forearm. Standing behind her, Charlie turned on the water and took several pumps of soap from the dispenser. As he started to wash the red off, Sam stood frozen. He cleaned and inspected her hands. Once clear, he grabbed some paper towels and dried her off. Her hands began trembling while Charlie worked. Once done, he took off his jacket and put it around Sam. Then he turned her around to face him. Charlie’s eyes darted around her face and neck looking for any other injuries. Once clear, he looked into her eyes. They were filled with the uncertainty of the moment.

Then with tears.

As she began to cry, Charlie slid his arms around her and pulled her close. She buried her face in his chest. The sound of her muffled cries became harder to hear as the sirens of the police cars grew louder and louder and louder and then finally stopped.

Copyright@2016  Vincent F. Macaluso

This is how my son sees it…

A few weeks ago I posted a piece that my daughter had written about me and how she views my multiple sclerosis. In turn, I feel that it is only fair that I share how my son feels about me and my multiple sclerosis. The piece that he wrote was first published in my book, Multiple Sclerosis From Both Sides of the Desk, when he was eleven years old. 

The fact that he is now fifteen years old, taller than me and has a physical strength best described as “He doesn’t know his own strength” strong, plays no part in my decision to post his piece.

MY DAD

By Vince P. Macaluso, Age 11

I love it when Dad takes me outside and he catches while I pitch to him. I find it interesting that when my dad throws normally, he throws curve balls even though he doesn’t mean to do it. It’s just his way of throwing. I think it might have to do with MS.

One time my dad came into my class to read. He read a book that he wrote about me. The story was called Diary of the Father of a Fourth Grade Someone. It was about him waking me up while I was dreaming about striking out Babe Ruth. The Babe was brought back to life with chewing gum and a computer. At the end of the book, my dad leaned down, gave me a big hug, and said, “I love you.”

I don’t like it when my dad has to leave on a trip to do a talk about MS because I miss him. He has to leave because he has to do his job. His job is when he speaks about MS to patients and their families. I think that it’s important to those people so MS doesn’t destroy their lives. Knowing this makes me feel less sad.

I really hate it when he doesn’t let me pitch to him or play on his computer or iPhone. Sometimes he has to do his work. I like it better when my dad is not writing so I can spend time with him. But I understand that he needs to do his job.

I don’t like it when my dad wakes up at three or four in the morning to go to work because he wakes me up. Then I can’t go back to sleep. I go and wake up Mom. Then Mom isn’t happy because she can’t go back to sleep because she has to sleep twelve hours, but she only slept nine hours. I notice that he naps a lot. I’m not sure if that’s from MS or not. I get tired sometimes, but I don’t have MS.

I think that all of my dad’s patients are kind because they’re nice to me in the office. They’re nice because they think I’m cute.

I like it when he tells jokes. One time, we were eating dinner. My sister, Abby, my mom, my dad, and me were sitting at the table. Abby said something about something she did at school. My dad made a comment that Abby didn’t think was funny but I did. I started laughing so hard I fell off my chair onto the floor. I didn’t get hurt, but I got angry when my sister and mom started cracking up. My dad didn’t laugh at me. He just threw a towel down to me and asked me to start cleaning the floor.

I think my dad is brilliant because he has MS. I think he is brilliant because he takes medicine to help him. When my dad starts the IV for his medication, I think it’s a lot bloody. I ask him if it hurts when he puts the needle in. He says it stings like a little pinch, but then it goes away. Then he asks me to put the invisible thing on top of the blood-sucking tube. Sometimes he asks me to get him some water and rarely some potato chips. It’s also fun because my mom thinks that I might be a good surgeon if I don’t make it to the MLB. But I really want to be a baseball player in the MLB.

At night, I make my dad get in line to put me to bed. He has to go after my mom. He hugs me and says good night. Then I ask him to get water for me. So he gets water for me. Then we say I love you, and I fall asleep.

 

So this is how my daughter sees it…

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.