MS and Living Has Moved!

My address has changed -- just wanted to try designing my own blog using WordPress... Just restless I guess.

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Have a Wonderful Day!

Nick

A Great Day

Yesterday was a great day for me - mostly because I got to go to lunch with a beautiful young woman, and listen to her hopes and dreams for the future.

I listened to my middle child talk about her trip to Europe this summer and the experiences they had there, why she wanted to change her major to English from Psychology, and how the university is changing the rules for seating during the football games. All extremely important stuff to a 19 year-old.

This meal reaffirmed one more time that this kid gets it. She has always been described to me as "an old soul", displaying wisdom beyond her years and an understanding of situations that most of us would constantly fret about - until a good friend slaps you upside the head and says stop.

A case in point is when I was asked her about a certain young man that has been pursuing this "child" since their sophomore year in high school, and again this summer. She moaned as a daughter does at her father mentioning a boy - then said something I'll never forget.

"He isn't my type so I don't really care for him beyond being friends" she says, "He doesn't really like me either, I'm just a goal". And that was the end of this line of questioning. But I couldn't let it go in my head.

A GOAL...A GOAL... where did this wisdom come from. As any father that has had the joy and misery of raising a teenage daughter knows - you can only hope your daughter can get this wisdom without being burned by some kid (due to a father's karma coming full circle..?). I must admit, I was able to breathe just a little bit easier with her moving off campus for the first time - just a little.

Continuing over spicy tuna and Mexican rolls, the conversation then switched to her older sister's wedding in September - to whether or not there will be hurricane that weekend (we decided there won't be), how she is excited but sad to be leaving to school soon, wondering where she should try to get internships the next summer and hoping she can get up early enough to get the good seats at the football game.

All extremely important stuff to a father.

A Great Day by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Taking A Trip

Well, everyone in my house seems to be sleeping in this morning, so I thought I would catch up on some of my writing...

As I was "walking" to my computer room, I stubbed my left toe as one with drop foot does, and it made me start to wonder when the last time I "didn't" have a reason for tripping.

As with my first childhood memory - the memory of my first "trip" is vivid and blurred at the same time. I was doing my last minute run for a flight to Norway, and was going up the escalator from the parking garage to the ticketing level at Brussels' Zaventem Airport. I was wearing my overcoat, and was dressed in my typical uniform - a suit, tie, lightly starched shirt and cuff links, completed with my brief case and overnight bag - and when I reached the very top and started to step off, I went down without any warning, hard.

Fortunately, I didn't take anybody down with me - and I recovered doing the old Pee Wee Herman routine - popping up with the "I meant to do that!" look on my face. Though I absolutely remember the confusion I felt- and wondering why did that happen???

That was the first time in my life I can actually remember falling without a reason or blaming myself for not paying attention to some obstacle in my path. I was truly dumbfounded on why I fell - and more than a little surprised when I did (Pee Wee Herman reaction aside...). While I walked to passport control, I kept thinking about how it must be my new shoes, or my distraction caused by thinking about the pending meeting in Oslo - though I had no answers at that time, in my heart of hearts, I didn't think it was an innocent little trip.

I had started to notice how my left foot would drag after working out or walking 18 holes on the golf course - and I wondered if this was connected to my constant need to go to the bathroom. Was there something really wrong... or was I being silly because I fell and I don't do that?

Well, within about 6 months of this happening, I almost fell in our kitchen from stubbing my toe after going for a short 1 mile run. My wife looked at me and said that enough is enough, we're going to the doctor! I had no more excuses to hide behind - like I'm getting older, out of shape, or not looking where I'm going. I knew it wasn't right and something was wrong...

When I stubbed my toe this morning, I didn't get confused or wonder about my shoes.

Taking A Trip by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

11th Tysabri Patient Develops PML

Occasionally I'll post news items that I come across for all to review - Directly From their Feed

Article Date: July 29, 2009 3:00 PDT

An 11th patient taking Biogen Idec's multiple sclerosis (MS) drug Tysabri has developed a potentially deadly brain infection. In the latest confirmed case of progressive multifocal leukoencephalopathy, or PML, the patient took Tysabri for 29 doses, continuing the trend of the last six reported cases of the infection, where each patient had therapy for two years or longer.

The latest patient was located in the USA, the third American to have developed the infection. Of the 11 reported cases, one patient has died. The PML incidence rate remains below the long-projected risk rate of one in 1,000 patients for those patients receiving the therapy for 12 months or 18 months. The drug was temporarily withdrawn in 2005 after it was linked with PML, but was then brought back in 2006 with stricter safety warnings.

Tysabri continues to receive strong support from patients and doctors, however, because of the drug's perceived effectiveness. That support has remained steady because patients are made well-aware of the PML risk before they start taking Tysabri for MS. This is the last case of PML that the company plans to announce on its website.

In future any new cases will be reported by word of mouth to medical professional and patient groups.

SourceMultiple Sclerosis Society

Action Magazine

Just read through a magazine I had received in the snail mail this morning - called Action. It is put out by the United Spinal Association. Evidently, I received it as a member of the Mid-Florida Chapter of the MS Society, and I'm glad it was sent to me.

It is really quite good, easy to read/follow; and I must admit quite appropriate articles on issues like urinary retention and bowel issues. You can check out the articles at: Action. I don't know why I was surprised - but MSer's seem to share a lot of the same issues with those of us with spinal cord injuries, and the articles (IMHO) didn't seem as depressing as the ones in the MS Magazine.

If you are in the Central Florida area in August, there is the "Independence Expo" in Orlando from August 7-8, and the National MS Society will have an exhibit booth there, #205.


Action Magazine by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The ER

Once again I found myself in the Emergency Room yesterday - with the same issue I've had for 10 years - my urinary tract - or sphincter muscles - go spastic, and I can't void. Yes, it is exactly what it sounds like, I can't pee.

If you've never had this issue, and I truly hope you don't - the pain is immense. The remedy is quite medieval, as a tube needs to be slid up where no man wants a tube slid up - and drains the bladder. When the blockage happens though, I actually look forward to this invasion, my definition of the the lesser of two evils - and the joy in seeing the backed-up water pour down that tube once the bubble is in place, is as enjoyable as popping the top button on your pants watching the football game after your Thanksgiving day feast!

Now many with MS and other issues do self catheterising - and I admire them - but I just haven't gotten the nerve to learn how to do it yet; though I'm starting to think I may from a cost/convenience stand point. I'm sure I can do it, after all, I didn't think I could give my self a shot, either.

However, my point in writing about this is not me being a wussy and not wanting to take on this new challenge, but rather to talk about the nurses at "my" ER.

Simply said, it is amazing to me how kind and helpful people can be when you let them. Like many of us, I have always been proud and would rather help someone than be helped. But you learn quickly that sometime you need help, and these nurses are real "pros" in the helping area.

The triage nurse sees me coming - and more often than not, will get me in the back while she is doing the required work-up. Anyone that has been in an ER knows this is a big deal. The compassion in her eyes is evident - and she doesn't make me beg - being a frequent flyer does have its advanages.

Now technically, I expect the medical professionals to know what they are doing - but with my particular issues, I truly appreciate how they are able to leave me with my dignity after "performing the procedure". Humbling, actually - but an act that is greatly appreciated - which I'll be sure to "pay it forward" in my own little way.

So ladies, I won't use your names, but you know who you are - Thank you.




The ER by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Never Pass a Bathroom

The other day my wife and I were driving around, looking at properties in our area (did I tell you I'm a Real Estate Agent) and that good old feeling of "I gotta go NOW, and I mean NOW..." came across me. Those of you with this wonderful issue know what I mean. Now fortunately, we were in a particularly rural area and I was able to relieve "the pressure" by pulling off the road - well, you get the picture. I have to admit, since living overseas, this hasn't been as big a problem as it was before we did - though it does "jump" out at me every once in a while. I think I need to explain.

When my urgency problems started, we were living in Europe - England actually - our girls were small and we toured around every chance we could get. To this day I credit this period of our lives to a very unique ability I have - that of being able to find a toilet (in England, a bathroom is for taking a bath) in nano-seconds. Which for parents of small children, can be a god-send (hmmm, did I really use my children as cover-up?). It got so common in our family, that they wouldn't even think twice about how I would disappear to a hidden corner of some ancient castle we were touring and find that elusive toilet. I soon developed the habit of "Never Pass a Bathroom" because you never knew... the real family favorite was always stopping at EVERY rest area along the road because "there might be a traffic jam ahead". And I won't even get into what it was like to travel around Europe on business with this issue!

Then I was transferred to Brussels. We all know Brussels to be the center of European Government and Napoleon's downfall during that fateful battle in Waterloo (at least that's what the song said).

What you may not have known, is that they are also known for their driving, especially "priorite a droit" (French for "priority from the right" - have some fun and google it) and, no kidding, peeing out in the open!

Now I'm a I big believer in living somewhere to really know it - a quick tour doesn't do it justice (ask my oldest daughter who just moved to Mississippi!). And you will always find out the fun factoids that Frommer's doesn't know to tell you. I can't mention how many times in the first month after I was transferred that I saw men peeing by the sidewalk or next to a tree - so much so I had to ask one of my Belgian colleagues about it. With no apparent shame, he said "Of course - why not - when we Belgians need to go, we go!"

Hallelujah! The untold motherland of MSer's with urinary urgency. I must admit, as a prudish American in Belgium (by their standards) - I didn't imbibe that often in this open celebration of passing water - but knowing that I could, seemed to lessen my need to go all of the time. Amazing how the mind works.

In way of condoning this activity - I swear they have their own little god of "Peeing in the Open" - and you can find him off a little alley way attached to the Grand Place in Brussels - the Manneken Pis - and for you ladies, his female counterpart Jeanneken Pis hides herself at the very end of another alley off the Place as well.

Now, I was diagnosed in Brussels with MS, and was put on my meds at about this same time - but I choose to believe the "openness" in Brussels and the little cherub relieved my pain - not the meds.

So if you share this urgency issue with me, make a pilgrimage to this little god of "Peeing in the Open" and maybe you'll find some relief, too.

Until then, remember - never pass a bathroom!




Never Pass A Bathroom by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Early Morning Muses

They call it fatigue, but I just don't seem to get a full nights' sleep anymore. So can't fatigue be caused by lack of sleep, too? On a good night, I only get up once for that urgent bathroom call, usually around 2am, and go back to sleep, and get up around a more civilized 7am. But recently, I've been waking at 4:00, and wide awake!

Now that I write about it, I don't mind it as much as one would think I would. Some wonderful things happen early in the morning - quiet time to think, exercise at your own pace, and then there are the sunrises that I wouldn't normally take the time to look at (or get up for) if my sleep pattern was a "normal" one (...a benefit of having MS?). With all of the rain we've been having here in our part of Florida lately - the sunrises are particularly colorful - with the leftover clouds and the start of a clear and humid day.

I also find that I have a much clearer, or less cluttered, thought process at this time of day, and love to just be quiet and think.

I've always liked the serenity of the early morning. Whether it was being out by the pool listening to the quiet before the family rose, playing squash with friends or the early morning drive to one of the NY airports when we lived in Connecticut, travelling down the Merrit Parkway with very little traffic, no radio, and enjoying the solitude of my thoughts.

I'm not sure how to stop writing about this - other than to say tomorrow I'm going to embrace waking up so early, and enjoy it - now time to do some work...



Early Morning Muses by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

How To Describe MS to Non-Participants

Here are some descriptions that I have used over the years to desribe what it feels like to live with MS:

1. To Coffee Drinkers: You know how you feel before you have your first three cups of coffee a day - well, that is how I feel on a good day.
   
2. Describing Symptoms: They are like a light switch, they are either on or off and the juice is either flowing or it isn't.
   
3. To a New York Yankees Fan: MS SUCKS!!!
   
4. Describing Spasticity: Imagine you being put in the fetal position and someone wraps a rubber band around you. Now straighten upl
   
5. Describing Spasticity: Have you ever tried to put a two year old in her car seat when she doesn't want to go and they go stiff as a board....


6. To a Boston Red Sox Fan: JETER SUCKS...oh yeah, so does MS! And JETER SUCKS!
   
7. When asked how you can give yourself a shot: It's easy... do you want to try?
   
8. When you are at Disneyland: HA HA, I have a scooter!!!
   
9. Double Vision: Kinda' self expanatory, don't you think? And by the way, which one of you asked..?
   
10. MS Fatigue: Don't know if it is MS, or the fact that I get up four times a night to pee and I only get 3 hours sleep!

I'd love to hear more - so please share!

How To Dexcribe MS to Non-Participants by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

The Routine...

Last week was my one year anniversary of taking Copaxone - and it has become part of my morning routine - what I fondly call the 4 S's. You know, Shower, Shave, Shot & S$#@ (I know it doesn't rhyme, but it does roll of the tongue if you say it really fast).

Now to be honest, I really only do 2 of the S's religiously - the Shave and the Shot. If I didn't do so many video conferences, I probably wouldn't shave as often, either. The shower depends on whether I feel I'm up to standing that long, supported by some really strong hand rails - and the last S, well, let's just say things don't seem to work as well - or often - as they used to.

Now it is worth mentioning that I took a weekly shot of Avonex (interferon beta-1a) for NINE years before I switched to Copaxone. For the first 6 years, I could put up with the post shot symptoms. When I started taking the shots in 1998, they had just been approved for prescribing in Europe and was the only choice I had (we lived in Belgium at the time). Fortunately for me, the protocol of Advil 1 hour before the shot, and 3 hours after the shot worked well (please - don't do this without your Doctor's agreement); but I still felt extra stiff and extra groggy in my leg muscles the next day.

The last 3 years I started to loose faith in my meds - especially confusing since my MRI's have not shown any progression in lesions (great news) though my walking has progressively gotten worse over the years (NOT great news). The symptoms of Avonex - for me - became too debilitating as I was losing two to three days a week to being so stiff I couldn't get up or walk at all.

So like a man in charge of my destiny, I went to my neurologist and told him "we" have to switch - that I can't afford to lose two days to work or family time per week. He cautiously agreed - with the caveat of semi-annual MRI's to make sure I stay non-progressive in regards to the lesions.

I couldn't be happier with the results (well, I could be, but that is another story). I have seven days per week of normal living and the subcutaceous shots are better than an intramuscular shot any day. I'm not walking any worse in the last year - and my MRI's look the same as they did a year ago!

Now if I could just get that fourth S moving again...


The Routine by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Can You Stop Being Who You Want To Be?

I'm a 52 year old male with Multiple Sclerosis. In my younger years, I considered myself a "jock", with 5 varsity letters in High School, and 2 varsity letters at University. I have a BS and an MBA degree - and was living a successful corporate executive life, travelling globally 50% of the time - including being expatriated 6 years to Europe.

I went to college in the Midwest - and was recruited to a consumer products company in metro NYC. As a family, we went hiking and biking, playing sports together - and teaching my children what I had loved as a child. Socializing with my friends on the golf course or squash courts. Even as a corporate executive, I still defined myself with my physical abilities - playing tennis, golf, skiing, and working all kinds of crazy hours including schmoozing til the wee hours of the night.

After feeling "not quite right" for a few years and a couple of definable episodes, I was diagnosed with Multiple Sclerosis in 1998 while living in Belgium.

I share this because I believe we are who we are; and when I was told I have MS - I didn't stop wanting to be who I had been - and i didn't want all my hard work and plans to go away.

In reality, life was about to change, in ways even I couldn't fathom. Nothing in MS is predictable (except it's unpredictability), and I figured my physical abilities would decline, but I never expected the effect my diagnosis would have on an extremely important part of me... dreaming.

One simple question kept haunting me:

Would I still be able to climb Mt. Everest?

I had never thought about climbing Mt. Everest before. Had this unconscious dream now been taken away, or was it a sign to start new dreams?

Can You Stop Being Who You Wanto To Be by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Independence Day

Today is the 4th of July - known in the US as Independence Day. After thinking about writing a blog on Multiple Sclerosis and Living for as long as I can remember (or as long as Blogs have been around) - I'm finally taking the leap - one more step in my journey to Independence from the shackles of this disease ... as the Dao de Ching said - "The journey of a 100 miles starts with one step."

I'm what may be called in some corners as an incurable optimist (or as my wife puts it - incurably delusional), and I see opportunities in every aspect of living, even with MS. I hope to write this blog with relevant posts/chapters as I ramble through my story - and history - with "MS and Living!" - my thoughts, experiences and learning.

I most likely won't write for too long on any one sitting as my left hand goes spastic after about 5 minutes - though I'll warn you, I have been playing around with audio dictation/typing tools, so maybe I can go longer. One more caveat, if you follow these posts, you may feel like a time traveller, as what I'm thinking of at the moment most likely has been influenced by yesterday's history, and they'll pop into my head quite randomly... so be warned.



Independenc Day by Nick Marazita is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.