#inspiration

So a lot of people have told me that my story, my humor, and my point of view have inspired them. Great... Way to put the pressure on me to be inspirational. I'm glad my way of life has given hope and happiness to others who either live with MS or live with someone who lives with MS (those are the people who are truely inspirational. I don't know how my girlfriend can deal with my crap most of the time but she does).

I've decided that, since I've been made in to this role model by my readers, I'm going to start doing things worthy of your admiration.

First, With the help of my good friend and aspiring personal trainer, Becca, I've outlined a training schedule to run in my own NickWithMS 5K Run for my 27th Birthday this year on August 28th. This will be the first of a line of physical events in which I will participate to help spread awareness and raise money for Multiple Sclerosis. Becca and I will also be training to participate in St. Joeseph's College's leg of the Bike MS 100 Mile Bike Tour through Southern Maine in 2013. I will keep everyone updated with details on participating in an event in your area on behalf of Team NickWithMS.

Also, I've started a new rock band called Calamari Special with my good friends Jack, Kevin, and Zack. We will be writing, and performing original rock music and donating all proceeds to Multiple Sclerosis Support and Research. Keep an eye out in the future for details on that.

These are all brand new endeavours so I applogize for not having too many details on them as of yet. Keep an eye out on my Facebook Page - http://www.facebook.com/nickwithms, my Twitter - http://twitter.com/#!/nickwithms, and, obviously, here on my blog as this all develops further.

Thanks to everyone who has followed me and supported me. I'm so happy to hear that I've been able to return the favor to so many of you.

NickWithMS

My Plan to Stay in Shape

One thing I keep hearing from every MS Information Source is the importance of staying in shape both mentally and physically.

Before my most recent relapse on December 25, 2011, I was running 6 miles a day, 5 days a week on the elliptical machine at my gym. I felt great when I was doing it. I was able to keep that up for about 3 weeks before my relapse at which point all workouts stopped. Now I'm at the point of getting back in the routine again. I've decided I want to train to run road races. My first goal is to complete a 5K before my 27th birthday on August 28th. As anyone who is experienced in running knows, running on the road is NOTHING like running on an elliptical.

Luckily for me, I have a friend, Becca, who is a competitive runner and also aspires to be a personal trainer as a career. She has outlined a training plan which will help me with this goal. I'll update my progress occasionally in my blog and on my Facebook page.

Training starts Jun 26. Wish me luck :-)

Wanna get High?

Through my posts, I've regularly poked fun at people who seem overly interested in the advances in Medical Marijuana research. This is a tough topic to talk about because research has shown significant benefits and improvements from Marijuana use among MS patients. Anyone who has smoked Pot regularly has probably realized that it suppressed their immune system. With MS being an Autoimmune disease, this is clearly a benefit. However, anyone who has ever hung out at a Dave Matthews concert also knows that repeated use of Marijuana has debilitating congative effects. Honestly, I'd rather fight my MS another way than start accusing everyone I see driving a BMW of being part of the "Corporate Machine who fights to keep the little guy down." Don't get me wrong, Jam Bands have their place; I just really don't want to get to the point where I think a 20 minute Vacuum Cleaner solo qualifies as a Revolutionary Advance in Music Theory and Performance.

My whole life, I have been cautious about taking perscription medications. Even when I had my wisom teeth out, I took a couple OTC Advil rather than the Vicodin my Dentist prescribed me. I grew up knowing that I was never the most physically attractive guy in the world. The only thing I always knew I could rely on to get friends (especially girls) was my wit and humor. When I'm on drugs, I'm not even able to tell a joke correctly. I am prescribed a few different drugs to take As Needed to help fight symptoms such as Fatigue and Panic Attacks - both of which are pretty regular symptoms of MS.

I've been told by many people that I qualify for Medical Marijuana in the State of Maine due to my diagnosis. I'm not doing this for quite a few reasons. First, I'm not in high school. I don't like being high. My brain is already being destroyed by my immune system. I don't need to surpress it more with THC. If I started smoking pot daily, you would probably find that my blog becomes a lot less.... umm.... whats the word..... you know..... good.

See what I mean?

The other reason is - I don't wanna be known as "The Guy Who Always Has Weed." The last thing I need is someone finding out that I've got Marijuana in my house and breaking in to get some while I'm at work and my girlfriend is alseep. I already have people wanting to get my other prescriptions from me. As easy as it would be to grab some extra cash on the side, again, I don't want to be known as "The Guy Who Has It."

If there is anyone reading this who has MS and is currently using Marijuana for treatment, please let me know your experiences with it. For right now, I don't think it's for me.

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@NickWithMS on Twitter!

My Immune System is so strong it's killin' me

In my last post, I breifly explained how Multiple Sclerosis works.

"It doesn't really get dangerous until your immune system becomes completely incompetent and just attacks everything near it..."

The down side of this, of course, is that it attacks things that I may need some day such as my Brain. However, the plus side of having a juiced up Immune System is that a almost never get a cold or The Flu. All my coworkers start calling out one-by-one as viruses mutate and attack their bodies one at a time. I am always worried that I'm gonna be next but, as luck would have it, I never am. Maybe H.G. Wells should have considered Multiple Sclerosis before sending his biomachines to a planet full of sickness and disease. Sure, they may lose control of their laser hand for a few moments and a few of the older ones may end up pooping their pants, but at least their entire infantry wouldn't be defeated by The Common Cold.

I also have the advantage of never being sleep deprived. Even when I was younger - many moons before my diagnosis - when ever I felt like I may be getting a sore throat or a sniffle, I would end up going to sleep early and getting in a good 11 - 12 hours before going to school. At my current job, I never usually need to be at work before 10:30am which allows me to make sure I sleep as much as my body tells me I need to. Again, this often leads to 11 hour comas and having everyone around me call me a lazy slob but I'll take it if it allows me to laugh at them when they are at home, tethered to a box of Kleenex and Dayquil.

I try never to let stress take me down. In my line of work - Renting Cars to Tourists at the Airport - I don't encounter much job-related stress and, when I do, it never lasts longer than 10 minutes before the situation - a.k.a. customer - goes away forever. In my personal life, as I mentioned in an earlier post, my girlfriend, friends, and family are the best I could ask for. There is no petty drama in my personal life. I am very lucky to have found the friends that I have and made the decision that Length of Friendship does not equate to Quality of Friendship and pushed away long time aqaintences who were adding stress without any real benefit. My circle of friends has been significantly reduced over the past few years but my quality of life has improved exponentially.

Whether you have a disease or not, making a regular inventory of your stresses and sending away as much of them as you can is always a much healthier way to live. I will follow that up with my usual disclaimer - I'm not a doctor.

My mother recently realized that a long time friend of hers was causing more harm than good to her life and finally, after 30 years of friendship, decided it was time to cut her ties. This was an incredibly hard decision for her. Sometimes, even though we have a long list of reasons to break ties with a person and have convinced ourselves time after time that we will feel so much better after we do it, we still can't bring ourselves to make that move. Anyone who has ever been in a failing relationship for far too long knows exactly what I am talking about. Months down the line, though, we wonder why we didn't make the decision sooner.

Stress is a powerful thing. Get rid of it. Sorry if this blog wasn't as funny as my usual ones but I felt it needed to be said.

Nick

A non-medical explanation of MS

So this blog is becoming more popular than I had originally thought! Thanks everyone!

I'd like to start by asking all my readers to follow me on Facebook and/or Twitter.
http://www.facebook.com/NickWithMS
@NickWithMS

I'm pretty open with people about my disease (hence the blog) but I find when I tell new people that I have MS, they look at me with the same look of terror that I saw on the faces of those newly diagnosed patients when they told their stories of their initial diagnosis. Now, this could mean a number of things. Logically, since most people seem to react in a similar way when hearing news about MS - whether they're finding out that they have it or learning that their friend does - one would come to the conclusion that I am the outlier and simply under-reacting to the situation. The other conclusion - the one that I draw - is that people just don't know what Multiple Sclerosis is. Most people know the words. Most people know that it is a disease. Most people know that it is incurable. I could see why, only being prepped with this basic information, a person's immediate reaction would resemble that of the famous Edvard Munch painting. 

I'll try my best to end this silliness right now by explaining basically what MS is. Keep in mind: I'm not a doctor. 

Lets start with the basics -
Sclerosis - In the medical field it's definition can vary slightly. According to wiki (the most trusted news source in the Universe) the broadest definition is: the stiffening of a structure, usually caused by a replacement of the normal organ-specific tissue with connective tissue.

In my case, it refers to plaques and scar tissue found on or around nerves due to inflammation and immune response... Think of it this way: when you cut your hand, a scar forms. Same thing is happening in my brain, only I can't prevent it with a pair of Kevlar gloves.

Multiple - see 'multiple' Seriously. I'm not going to define this word for you. If you need a definition, you aren't my target demographic and you should feel free to stop reading my blog.

Now that we have the definitions sorted out, the question would be "so why does this happen?" Well, I'm glad you asked. Neurons are made up of a couple different parts. I'm not going to describe them in detail. Instead, I will show you this cool little cartoon.

 The important parts of this photo are the Axon and the Myelin Sheath. Basically, neurons are like extension cords. You've got your Axons which are like the actual electrical cables that conduct the electricity and you've got Myelin Sheaths which are like the rubber insulation which keep you from getting electrocuted every time you turn on the light switch. Normally these guys just hang out and conduct the amazing electrical light show which is constantly taking place in your brain like a perpetual Trans Siberian Orchestra concert (or, for those of you who are interested in advances in Medical Marijuana Research, a Pink Floyd concert).

Also in one's brain are immune cells. They like to hang out to make sure pesky invaders like Meningitis don't just randomly show up to crash the party. They're the same immune cells that travel all over your body to attack flu viruses and other types of sicknesses. Sometimes, the immune cells get confused and start waging war on things that aren't actually dangerous. Anyone who gets the sniffles in the spring time due to pollen allergies is already familiar with this phenomenon.

 "Wait? What is that? A harmless piece of flower sperm making it's way in to my nostril? THIS MEANS WAR!" 

So your body wages war on something that it shouldn't and you have to suffer the consequences. You end up feeling like you're sick because your body actually thinks you are.

Usually, this confusion - though annoying - is completely harmless. You deal with a runny nose and your 'Alexander the Great' Immune System feels like it has conquered something substantial. It doesn't really get dangerous until your immune system becomes completely incompetent and just attacks everything near it - including your own body. This is what is referred to as an Auto Immune Disease. That is just how it sounds. Your body is trying to become immune to itself by, well, attacking itself.

In the case of Multiple Sclerosis, the enemy is the nervous system. My immune system sees the Myelin coating on my neurons as a danger to society and decides to attack it.

Once the Myelin is gone, those Axons short out against each other and my brain has no clue where information is coming from. It would be like wiring your house with bare copper wiring. Light switches, if they were even able to work, would be turning on and off all different lights because there would be no protective coating to direct the flow of electrons.

Luckily, with intense steroids, medicine is able to stop the immune response long enough for the Neurons to grow a nice layer of scar tissue to help protect themselves. Once the immune system destroys the Myelin, it begins to attack the Neuron. Anyone who has hear the story of Dr. Frankenstein knows that once a nerve is severed, it can not be restored. The idea is to stop the immune response before it gets that far. 

My current method of treatment, Copaxone, works by shutting down the pathways which allow my immune system to co-mingle with my nervous system. This keeps my body from attacking itself, but it could, hypothetically, allow things like Meningitis to slip in unannounced and undetected, though I haven't found any documented cases of this.

I hope that helps answer any questions you may have about the disease. Remember, I am not a Doctor. Not even a little bit. So if you have any further questions or concerns, please contact a Doctor.

Dr. Phil doesn't count.

Support

My Friends and Family are my biggest support
because they aren't afraid to make fun of me.

When I attended the support groups and free dinners provided by the pharmaceutical companies, I learned two major things: First - drug companies definitely have a shit ton of expendable income. Every dinner was catered with stuffed chicken breasts, pasta buffets, fillet mignons, and a wide assortment of delicious truffles and parfaits. It made me hope that Multiple Sclerosis and Diabetes are mutually exclusive. I suppose, as long as my insurance company is fronting about $1,000 per month for these drugs, Pfizer at least owes me a chocolate covered cherry and a steak, right?

The second thing I learned, apart from finding out which patients were closely interested in the advances in Medical Marijuana Research (though, their Grateful Dead T-shirts would usually identify them the moment I walked through the door), was how scared and alone people can feel when dealing with this disease. The problem with diseases like MS is that, often times, the symptoms have no visible side effects to a third party. My most common little episodes usually include partial blindness, numbness, and balance/coordination issues. None of these symptoms can be easily seen by an onlooker so they can be easily dismissed as melodrama by employers, friends, and the single mom making my tall skim vanilla chai latte as she rolls her eyes at me because I'm having difficulty picking the quarter she carelessly slung at me up off the counter on account of having no feeling in my left thumb.

Luckily for me, my closest entourage understands this disease as well as anyone who isn't currently going through it can. When I encounter a difficult situation, my best defense mechanism is comedy. I treat this disease like a joke and those around me do as well. While this method may not work for everyone, it allows me to talk easily with my peers about what is happening without making anyone feel overly uncomfortable and, thus, causing my number one fear to become a reality - an awkward silence.

I made reference in my last post to my reaction when I first received my diagnosis.

"Getting diagnosed was one of the most difficult things I have ever gone through. Now, I don't mean that receiving the news was emotionally devastating and made me want to curl up in to a dark corner and cry by myself for the weekend. No - I actually mean the process was more difficult than a job application for Google."

The truth is, some people actually did want to curl up in to a dark corner and cry by themselves for the weekend. During the first year of my diagnosis, it was suggested that I attend support groups specifically targeted toward newly diagnosed patients. Again, I found myself the youngest person in the room and felt like, though we all shared one thing in common, no one's story was anything like mine. People talked about receiving the news from their doctor as though it was a death sentence. They described in detail the horror they felt as their Neurologist explained that they have an incurable disease and that modern medicine still doesn't fully understand it.

I'm not sure why,  but not a single one of those thoughts went through my head when I got my diagnosis. The only real information I took away from that meeting was:

• Finally someone can tell me what the hell is wrong with me.
• Good. This disease isn't contagious 
• While there is currently no cure, there are effective treatments
• Multiple Sclerosis doesn't kill you

I don't think of my self as an overly optimistic person; as you can probably tell by now, I'm actually quite cynical. When I sat there and listened to these people dredge on and on about how they felt like their life was over, I realized they were going to be of absolutely no benefit to me. Where were all the people who wrote their bikes 45 miles to prove that they still had mobility? Where were the people I saw on TV pulling the Boeing 747 with their bare hands because MS didn't take their lives away? These were the people I connected with. I wasn't a victim, I was simply afflicted by an unfortunate turn of events. At least it wasn't AIDs or Cancer. At least I didn't have to worry about infecting my friends. How could people be so upset about this news. On the long list of incurable diseases, Multiple Sclerosis is the one I would pick every time.

My biggest form of support comes from my wonderful girlfriend, Cassandra. She has come to understand the effects of my disease better than anyone else I know. She has come with me to neurology meetings, MRIs, free vacations in the white mountains sponsored by the MS Society, and free dinners put on by the drug companies. She's such a trooper. She understands that, some day, this disease will probably get the best of me and has stuck by my side regardless. It is such a comfort to know that I have someone to experience this all with who actually understands it. She doesn't break down in tears and fear the worst every time I get a tingle in my hands; she usually says something like "well, that's what you get for dancing like an idiot for 30 minutes without drinking water." She understands that there is a fine line between taking something seriously and making a joke of it. She gets it. She is my biggest support because she knows how to make fun of me. 

5 years and counting

Hi.
I'm Nick.
I'm 26 years old.

 I live in Maine

 

 

 

 

I play Piano.

 

I'm a Stand Up Comedian

When I was 21 years old,
I was diagnosed with Multiple Sclerosis.

I have been reading a lot of posts and magazines put out by MS support groups such as the National MS Society and PatientsLikeMe.com and I have decided to start writing a blog to share my personal experiences with the disease with the world.

I am doing this for two reasons. First - as I'm going through all of these experiences, I find it difficult to communicate regularly with people who share similar experiences with me. Finding someone else who has Multiple Sclerosis is hard enough; finding someone within that group who is in their 20's/30's is nearly impossible. I've decided that if I'm not finding people to talk to, other people probably aren't either.

Second - I can't remember anything and this will be a good way to track how I'm feeling on different days.

While writing this blog I hope to entertain and inform my readers about both my life and my disease.

Let's start with the basics - 

MY DIAGNOSIS

I was diagnosed with MS on April 16, 2007. Coincidentally, the same day as the infamous Virginia Tech Massacre. I know this because I was watching it unravel on CNN in the waiting room of my Neurologist's office whilst awaiting the results of my MRI and Spinal Tap.

 

Getting diagnosed was one of the most difficult things I have ever gone through. Now, I don't mean that receiving the news was emotionally devastating and made me want to curl up in to a dark corner and cry by myself for the weekend. No - I actually mean the process was more difficult than a job application for Google.

I awoke on the morning of Monday, April 2nd with a slight tingling in both of my feet. This was nothing unusual. Who doesn't wake up with some random part of their body feeling like it was being tattooed by a million tiny needles, right? As if I really wanted my feet permanently tattooed purple just to save myself the hassle of folding socks for the rest of my life.

I went to work and carried on about my day as usual but as lunch hour approached, the numbness was not subsiding. At this point, I began to wonder what could be causing the issue. The most logical reason - a pinched blood vessel restricting the oxygen to my feet and, thus, causing the "pins-and-needles" feeling with which anyone who's ever fallen asleep on their hand is quite familiar.

By lunch time, the tingling had moved its way toward my knees.  At this point, I started to get a little more concerned so I asked my boss if I could leave early and head over to the Emergency Room at Maine Medical Center. Luckily, he seemed to think the idea had merit and gave me the afternoon off.

After explaining my situation to the receptionist in the ER, she kindly told me to sit in the Waiting Room. Two hours later, I was seen. I explained my situation to the Doctor. He kept asking me if I was on any medications or used any recreational drugs.I kept saying "no" and continuing on with my story. After a brief visit, the Doctor concluded that I had bruised a nerve and it was causing the tingling in my feet. I am not a medical professional but this answer did not satisfy me. I asked the Doctor how that would affect both of my legs from the knees down and not just one specific location. He threw a bunch of medical jargon around hoping to confuse me enough to stop asking questions. He was successful.

By the time I got home that evening, the numbness has moved its way up to my thighs. This concerned me because it was getting dangerously close to the area that Jerry Sandusky used to call "Nick's Special Place."

I woke up Tuesday morning and the situation was progressing. By this time, the numbness had moved up to my belly button. In case you were wondering (and I know you are) my hunka hunka burnin' love seemed to be the only part of my body not being affected by the numbness. Score. I called out of work and returned for a second visit to the ER. After again explaining my story to the receptionist, waiting another 2 hours in the penalty box, and then retelling my story to another Doctor, I was again accused of being a drug user and dismissed from the hospital. I decided that, since I wasn't getting any answers and since my hands were still fully functional, I would finish out the second half of my day and grab a couple two-tree dollars at work. 

That evening I performed a comedy gig at a bar in Gorham, Maine. During my performance, the numbness moved its way down my arms and in to my hands. At that point, in traditional Chris Rock style, I dropped the microphone on the stage and walked off. The audience loved it and I was able to leave with my dignity intact. What the audience didn't realize is - that wasn't part of the show. When I lost feeling in my hands, I couldn't tell how hard I was holding the Mic and I dropped it.

I drove immediately back to the ER and was much more intense with my story. My best friend Mike, my Dad, and his Wife met me at the ER at 9:00 that night. I finally saw a Doctor at midnight. After actually listening to what I had to say and doing a series of tests on me, she looked at me with a very stern and serious tone and said "You need to see a neurologist."

At this point, the details of me memories become hazy. Over the next few weeks I got an MRI and a Spinal Tap. For those of you who are unfamiliar with those procedures, I'll try my best to explain them to you. 

I don't know how an MRI works, but I'm pretty sure it has something to do with measuring the amount of stress put on your brain by strapping you to a table, shoving you in to an incredibly tight space, telling you not to move, and firing assault riffles next to your head.

A spinal tap is pretty much exactly how it sounds.They take a needle, puncture your spinal chord, and drain the fluid out. Just like making maple syrup!

 

The reason for the spinal tap is to rule out other similar neurological viruses like Lime Disease and Lupus - Both of which can show similar symptoms to MS, but will show up in your spinal fluid. If you test negative for both of those, you've got MS.

So that's my Diagnosis.

Since then I've been on a variety of treatments including Rebif injections, Copaxone injections, and monthly steroid infusions. I lived symptom free until Christmas, 2011. Almost 5 years without a relapse. I'm currently mostly symptom free (except for having almost no feeling in my left thumb) and am taking Copaxone injections daily... well MOSTLY daily... nobody's perfect, right?

Stay tuned for more fun.

Nick