Me Myself, and MS

Tag: Medicine Trial

  • 2 Years of Hope

    Two years ago I made a decision.

    I signed the paperwork. Rolled up my sleeve. Sat in a chair and became part of something bigger than myself.

    I joined a clinical trial for a drug called Frexalimab.

    Every month I make the trip for my infusion. Every month I sit there for about an hour while the medication, or maybe the placebo, makes its way into my body. Then I wait another hour while the staff monitors me before I head home.

    That’s it.

    No more eight-hour day.

    No Benadryl knocking me unconscious.

    No steroids making me feel like I drank twenty cups of coffee.

    Anyone who has ever received Ocrevus knows it isn’t just a Drug Modified Therapy infusion day. It’s an event. You block off your day. You prepare yourself mentally. You recover afterward.

    Frexalimab has been different.

    Simple.

    Quiet.

    Almost… normal.

    The strange part is I have no idea what is actually dripping into my veins. That’s how clinical trials work.  I might be getting the medication.  I might be getting a placebo.

    Nobody tells me.

    Some days I try to convince myself I know the answer. My latest MRIs showed no new lesions in my brain or spinal cord.

    Maybe that’s the drug slowing the diseasedown. 

    Maybe it isn’t.

    Maybe I’d have looked the same either way. Nobody knows Including me.

    I’ve learned to be comfortable living with uncertainty. MS doesn’t leave you much choice.  People ask if I think it’s working.  I honestly don’t know.  I still wake up with sore legs.

    My balance still reminds me who’s in charge. Fatigue still shows up uninvited. Heat still turns my nervous system into a protest.

    Progressive MS doesn’t hand out many easy victories.  But there have been no new lesions. I am far from being cured.  But I’ll take that.

    Hope doesn’t always look like getting your old life back. Sometimes hope looks like not losing more of yourself.

    I still dream, though.

    I dream about waking up one morning with half of my old body back.  Not all of it.  I don’t need perfection.  Give me fifty percent.

    Give me enough strength to walk farther.

    Enough energy to stay out with my family without calculating every step.  Enough balance to stop wondering if today is the day I hit the floor again.

    Fifty percent would feel like winning the lotteryi imagine.

    People ask me if I believe they’ll find a cure. My answer changes depending on the day. Some days I think I’ll die with MS.

    That isn’t pessimism.

    It’s realism.

    This disease has no finish line. It simply asks you the same question every morning.

    “What are you going to do today?”

    Other days I look at how far we’ve come along with medicine. Twenty years ago many of today’s treatments didn’t exist.

    Today researchers are targeting inflammation differently. They’re studying the brain itself. They’re trying to repair damaged myelin instead of only slowing the damage.  In some trials they are trying to do both. This gives me something I didn’t have when this journey began.

    Possibility.

    I’m not sitting around waiting for science to rescue me. I’m done living like the next breakthrough is going to show up next Tuesday.

    If a better treatment comes, I’ll gladly take it.

    If a cure comes during my lifetime, you’ll hear me celebrating from another zip code. Until then, I have work to do.

    I need to get stronger.

    I need to eat better.

    I need to move my body even when it argues with me.

    I need to protect my peace.

    I need to laugh more.

    Love harder.

    Keep writing.

    Keep showing up.

    Because surviving MS isn’t only about what happens inside a laboratory. It’s about what happens between one sunrise and the next.

    So every month I’ll keep showing up for my infusion.

    Maybe it’s Frexalimab.

    Maybe it isn’t.

    Either way, I know this.

    Hope isn’t something they’re infusing into my arm.

    Hope is the decision I make before I ever sit in that chair

  • The MS Breakthrough That Probably Isn’t For Me

    Living with multiple sclerosis teaches you to recognize certain buzzwords. You start to hear them so often they become background noise: “New treatment option!” “Promising trial results!” “Exciting breakthrough just around the corner!”

    If you’re in the relapse-remitting stage, those words sound like a lifeline. A new infusion, a fresh pill, something to shove the beast back into its cage, at least for a while.

    But the moment that diagnosis shifts to secondary progressive MS, the soundtrack changes. The anthem of resilience fades out, and what’s left feels like elevator music on endless repeat. That’s when the words you never forget come crashing in:

    “There’s less we can do now.”

    Translation? Good luck out there

    Welcome to Treatment Limbo

    With SPMS, the treatment menu shrinks. Some drugs you once relied on get crossed off. Others aren’t even recommended anymore. Clinical trials? Suddenly, you don’t fit the criteria.

    And it makes you wonder: who does fit the criteria? Olympic athletes with a touch of MS that clears up after a nap? Because it sure doesn’t seem like they’re looking for people like me.

    Meanwhile, the news cycle parades shiny headlines: “Scientists discover potential MS breakthrough!” You want to cheer. You want to believe. And then comes the fine print: “Results apply only to early relapse-remitting patients under age 25 who have never sneezed on a Tuesday.”

    So, once again, it’s another party I’m not invited to.

    The Weight of Waiting

    Hope doesn’t die with SPMS, but it turns into a scarce resource. You learn not to get too excited about bold announcements, because nine times out of ten, SPMS patients aren’t even mentioned.

    It’s like standing outside a candy shop, watching everyone else sample treats, while the shopkeeper tells you: “Maybe next decade for you.” Eventually, you stop pressing your face to the glass, not because you’ve stopped craving it, but because the cold feels humiliating.

    But still, you don’t stop hoping. You just fold it up and keep it in your pocket, careful not to let it break.

    Everyday Decisions in Limbo

    Treatment limbo isn’t just about medication. It creeps into everyday choices:

    • Should I spend money and energy on home modifications now, or keep waiting for the miracle cure the headlines keep promising?

    • Do I risk enrolling in a dangerous trial, or protect what little stability I have left? “Possible side effects” sounds scarier when your baseline already feels like a car crash.

    • Is it even worth planning five years into the future, or am I just daring fate to laugh in my face?

    Living in limbo means constant mental gymnastics. And honestly, I couldn’t land a cartwheel even in middle school.

    What Rarely Gets Said

    Yes, science is advancing. But here’s the part you rarely see in print: behind every glossy “breakthrough” headline are people like me, waiting and wondering if this one will finally count, or if we’ll be left out again.

    That’s the silence of SPMS. Not hopelessness. Not despair. Just hope left hanging in the air, suspended and untethered.

    My Closing Thoughts

    The hardest part of SPMS isn’t the absence of a cure. It’s the gap between what gets reported and what we actually live.

    So if you’re here in this waiting room with me, welcome. There are snacks (mostly sarcasm). If you’re not, remember this: every headline about “hope for MS” doesn’t mean hope for everyone with MS.

    Until then, I’ll keep rationing my hope, cracking my bad jokes, and shaking my fist at the medical fine print. Because really, if you can’t laugh at the absurdity of being excluded from the cure for the disease you actually have, then what else is left?

  • New Drug…who this?!?!

    It’s been quite some time since my last post, and I’ve been waiting until I had some good news to share. The past few weeks have been incredibly interesting, and I finally have something uplifting to talk about. This month, I received my infusion with the new drug Frexalimab. It’s a remarkable improvement compared to Ocrevus. The “O Juice” infusion is nearly an 8-hour affair, leaving me feeling sleepy and weaker than when I arrived in the morning. In contrast, the Frexalimab infusion takes only about an hour, followed by just one hour of observation. No need for pre-meds like Benadryl and steroids, which is such a relief! I feel so grateful for this change. The quicker process means less time spent at the hospital and more time feeling like myself. The new drug didn’t leave me feeling weak or tired.

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    There was a lot of blood that had to be drawn at the beginning before the infusion and then again right after it was done. Despite this, from the moment I arrived at the hospital, I was treated like a VIP patient. Everyone from the doctor to the research team and the nurse made sure I was comfortable and felt at home.

    I’m so happy and grateful to have such a wonderful team of supporters. Although my wife didn’t come with me this time, and I felt a bit anxious without her, everyone’s kindness helped put me at ease. My wife is my number one supporter, and has always been there for me during my infusions, helping me with anything I needed. However, the day was so busy that I hardly noticed her absence. My wife had been with me earlier while I was waiting for my Access-A-Ride to arrive at our house. Spending that time together the morning of made me feel like I had an adventure waiting for me to tackle alone. She helped me with my wheelchair and gave me a playful pat on the butt, just like I was heading off on the short yellow bus. In a way it felt just like that, especially with those AAR vans resembling special needs buses, though they’re white instead of yellow.

    My infusions will be scheduled once a month and administer at the same hospital. They say it will take a few months before I feel a little better. This is if I was given the real medicine and not the placebo. So why do this if I don’t know if I will receive the real thing or not. Well…I am doing this for other multiple sclerosis warriors who may benefit from this medicine. I want to contribute in some way, and I will continue to find other ways to help my fellow MS warriors.

    “Sizzling Adventures: Our Family’s Dominican Republic Getaway”

    Boy, do I have a story for you! When I say the Dominican Republic was hot, I mean H-O-T. Multiply that by ten, and you might get close. I couldn’t tolerate the heat for more than three hours before I went “Ctrl-Alt-Delete” on the whole situation. But let’s start from the beginning before I get into the part where I practically melted into a puddle. Our journey began at the ungodly hour of 4:30 am. Why? Because my lovely wife insisted we needed to be there three hours early for our international flight. The last time we flew as a family was to Puerto Rico last August, and it was a breeze. This time not so much. The airport was packed. I’m talking wall-to-wall people. My magic carpet, also known as my wheelchair had no superpowers that day. The priority line, which I paid extra for was just as long as the regular lines. So much for cutting ahead! When we finally reached security it was like I had a neon sign saying “Search Me.” I had to get my hands and wheelchair checked three times before they decided to pat me down again for good measure. The whole ordeal, excluding the time we spent waiting in line, took about 15-20 minutes. My family who was waiting looked utterly bewildered, like we had entered an episode of “Airport Security: Special Confusion Edition.” After all that, we finally made it to the gate, and I made sure the airline was aware of my wheelchair situation. Little did I know, the real adventure was just beginning. Stay tuned for more of our sizzling hot escapades in the Dominican Republic. Spoiler alert: there’s a lot of sweat, sun, and fun coming up!

    Picking up where we left off, landing in the Dominican Republic was a bit of a challenge. Picture this: I step off the plane, expecting my trusty magic carpet (aka my wheelchair) to be waiting for me at the gate. Nope! They sent it off to the luggage carousel instead. Perfect. My wife had to flag someone down to get me a temporary wheelchair just so I could get to my actual wheelchair. Oh, the irony! But hey, being in a wheelchair does have its perks. I might have been the last one off the plane, but I was the first one through customs. The process took seconds, and before I knew it, I was at the carousel, reunited with my magic carpet. It was a similar story on the way back home. We zipped through the immigration process like seasoned pros. One minute we were at the gate, the next minute we were at baggage claim. I think my wheelchair secretly has some magical powers after all!

    So, we stayed at the Hard Rock Resort in Punta Cana, and let me tell you, it’s quite the place. I personally love this hotel, and my kids? Well, they fell head over heels after discovering they could order room service a million times over. But seriously, they loved how massive the hotel is and the endless options of beach and pools. Now, let’s talk about the weather in the DR. It was scorching hot. I’m talking “is this where hell is located?” hot. As you may know due to my condition I have to avoid heat as much as possible. Unfortunately, there wasn’t much I could do to cool down in DR. The drinks were cool but never quite cold enough, and the pool? Let’s just say it was more like a warm bath than a refreshing dip. The one saving grace was laying on the beach well, sort of. You might be wondering how I managed that with my wheelchair. Well, this hotel has designated areas for people with disabilities, complete with huge bamboo umbrellas and accessible wood flooring to get you onto the sand. Of course there were a few times when I had to politely ask others to vacate the area. It’s frustrating when people take advantage of spaces meant for those who really need them. They really do not know how difficult it is to get around.

    Check out this quick video to see just how accessible this hotel was for me. The video is in time lapse so pause if you want.

    A quick tour. I was half way there before I decided to record.
    Look at my big belly!

    Our family trip to the Dominican Republic taught us a lot, and I realized something wonderful: my kids are fully aware of my situation. I love them to death. They are the sweetest, most thoughtful kids any parent could wish for. For a long time, I thought they didn’t really understand what MS is or what it entails. But on this trip, I noticed they were more than understanding of my limitations and needs, often helping out without me even asking.

    One of the highlights of our trip, aside from stuffing our faces with massive amounts of food and drinks, was tackling an Escape Room. It felt like a little team-building exercise for the family. Evan was hands-on with all the puzzles, while Jacey was busy researching the room and solving riddles. Mom and I were the backups. I mostly provided moral support and talked a lot, while Mom probably helped with one or two puzzles. But guess what? We did it! We made it out of the room with five minutes to spare. Honestly, I didn’t think we’d make it out in time.

    I will leave a phot on the bottom.

    We did it. Ramos Klan ain’t nuthing to F**K wit.

  • Trial Medcine Frexalimab

    Adventures in Medical Trials and Movie Date

    This week brought a touch of adventure and a sprinkle of excitement. On Friday, I ventured to the MS Center in Manhattan for a series of tests to determine if I qualify for a new drug trial. This trial is for a promising medication called Frexalimab. Over the next six months, I’ll be visiting the hospital once a month for an infusion. Whether I receive the actual medication or a placebo will remain a mystery, but if I’m fortunate enough to be included, it could lead to a four-year commitment to the study.

    I’ve never been part of a test trial before, so you can imagine my excitement. Being part of something that might help other MS warriors is exhilarating. Frexalimab was designed for relapsing MS and has shown great results in slowing down the progress of this uninvited disease. Researchers hope it can do the same for secondary progressive MS.

    My Friday was packed with a slew of tests—blood work, urine samples, a physical exam, ECG, mental health evaluations, and an MRI with and without contrast. They really wanted to know me inside and out. They asked if I was suicidal or depressed. The questions seemed silly to me because I love my life and everything in it. They also wanted to know every single medication I was on. The list was about nine items long, including my holistic consumption of marijuana. Just for the record, I don’t smoke it recreationally; I use it to calm myself and help me sleep. By the end of our six-hour visit, my wife and I were running on fumes, with our social batteries depleted to 10%. We didn’t talk to each other all the way home, but that didn’t stop other people from talking to us. I didn’t engage politely.

    How do I feel about this journey? Well, let me start by saying that my current treatment, Ocrevus, hasn’t been the beacon of hope I envisioned. Limited to only two medications due to being JCV positive, this trial could be a game-changer for those of us with secondary progressive multiple sclerosis. I’ve been on the “O-juice” since 2022, and my symptoms continue to worsen. So, I’m more than willing to be a guinea pig for the greater good of the MS community. The risks? Blood clots and potential death, but I refuse to let fear dictate my life.

    Date Night and Final Thoughts

    On a lighter note, my wife and I enjoyed a delightful “date night” on Saturday afternoon. I usually get anxious and stressed about going out. I worry about the temperature because I can’t tolerate the heat. That’s an MS symptom I wish I didn’t have because I love to be energized by the sun. Now a days get renders me useless if I am out for too long. I also get anxious about going to new places, wondering what obstacles I’ll encounter. If I’m going somewhere new, I get stressed. When my stress kicks in, my legs become spaghetti, and I forget how to walk. But then I remember I have my electronic wheelchair with me. This makes getting around a breeze for me and I have the freedom to get around.

    I love going out with my wife when it’s just the two of us. So, we went to watch “Bad Boys” at the AMC theater. Now that I use a wheelchair, I get to sit all the way in the back with all the others. The back of the theater has always been the best seat in the house. It was an exciting outing, especially because I got to show off my new wheelchair. The compliments it garnered made us feel our purchase was indeed a great one. My wife and I felt a bit out of touch with modern conveniences at the theater when we ordered our drinks and snacks through a kiosk instead of a human. I’m not complaining about the change, but I do prefer human interaction. Navigating the kiosk felt like using the self-checkout at the grocery store—we weren’t quite ready for it! I couldn’t shake the feeling that I was getting old and that the world is changing so fast. But by the end of the afternoon, I only crashed into the wall once, which is progress! I usually average double that on a good day.

    I always say that when people see me cruising in my wheelchair, they react in one of three ways:

    • They smile at me and look for ways to help.
    • They stare, checking out my cool wheels.
    • Or they see me walking with my hiking poles and can’t quite GET OUT OF MY WAY!!!

    I’ll leave you with this thought: I often face hard days and nights, plagued by numerous health issues. But rather than being perpetually angry or frustrated, I wake up each day ready to see what new challenge wants to tango with me. I’m determined not to let MS ruin my day. Complaining is exhausting, and I choose to save my energy for better things. My complaints are often silent, with my beautiful wife being the only one who hears them. She would probably say I don’t complain much, and for that, I’m grateful.