Feedback can be provided to: BobCaruso@oldcityposse.org

 

About the Old City Posse – Last Updated 3/16/14 (i.e. Year XII)

 

OCP: Year XII – New Beginnings (written 3/16/2014)

My first born son Bobby (RC3) came into the world on August 5th, 2013.  Lindsay and I are both very excited about bringing him to his first MS Walk.  In November 2013, I left Verizon so we are no longer sponsored by them.  I now work as a contractor at Cigna via consulting firm named Apex.  So new beginnings are abound for me this year.  It is a very exciting time for me.

 

On the MS front, I suffered my first MS attack since 2007.  I first noticed symptoms of a possible attack beginning when my foot felt a burning sensation when I stepped on cold water in the shower.  That in and of itself didn't necessarily indicate an attack.  It could have just been some old damage in my brain or spinal cord acting up.  Usually something like that will go away in a few days.  So there is nothing to be done but wait a few days and see.  Unfortunately things continued to get worse over the next few days.  I began to experience a tickling sensation running from that foot up through my leg all to the groin.  Again, I waited to see if it improved.  After another day, I noticed I had no feeling in my right eyebrow or the forehead area surrounding it.  There was no question it was a new attack.  The fear growing over the last few days transformed into my being thoroughly scared.  As frightening as the possibility of losing feeling in your forehead forever is, the thing that scared me more was that the attack might continue to do other damage such as losing my eyesight or the ability to walk.  So I hurriedly cabbed over to the Jefferson ER.  Eight hours later I received 1,000 mg of steroids through a one hour infusion.  Fortunately, this stopped the attack from spreading and, after a three to four weeks, feeling returned to my forehead and the tickling sensation in my leg went away.  MRI showed that I only had one new lesion in my brain.  I lucked out.

 

The attack was most likely caused by a combination of a nasty cold I had for several weeks that sparked my immune system, and the stresses of being in between jobs, my son getting a near 102 degree fever, and not being able to exercise throughout.  You see my strategy for controlling stress and thereby the disease requires lots of exercise.  I have to work out at the gym or play tennis at least every two to three days; three days is actually pushing it.  Exercise just wasn't possible while hacking up mucus for over two weeks with that cold.  Throughout, I felt helpless as I knew my chances for an attack were increasing every day without exercise.  Hopefully that perfect storm of stressors won't happen again for many years but this incident was a reminder that I still have an incurable disease regardless of however many years it remains dormant.  It also makes me think of the possibility that Bobby might have MS one day.  The most accepted belief is that the child of someone with MS is more prone to developing it due to genetic traits.  This knowledge refocuses me on the Walk so that a cure can be found so there is no possibility of him going through such an ordeal.

 

Introduction to Team

The Old City Posse (OCP) is an MS Walk Team that participates in the annual MS Walk at the Philadelphia Art Museum which takes place the first weekend of May.   The team was founded by me, Bob Caruso, in 2003.  The MS Walk is an annual fundraising event run by the National Multiple Sclerosis Society (NMSS) which raises money for programs aimed at helping those afflicted with MS and funding research grants to institutions attempting to development medical treatments for this presently incurable disease.  The disease attacks the insulation around nerves in the spinal cord and brain resulting in communication loss between the brain and muscles.  This can result in problems such as severe pain, paralysis, loss of touch, loss or degradation of eye site, loss of bladder control, spasms, and other neurological related problems.  Walkers ask persons to sponsor them for an arbitrary, flat, non-mileage based donation which is tax deductible.

 

About Myself and the Disease

I had been personally diagnosed with MS in the summer of 2001 nearing the age of 31.  I was hospitalized twice that summer for problems involving walking and the loss of sensation and the difficulty of using my hands.  I was then put on several medicines designed to slow the progression of the disease.  Primarily these are a combination of self injection needles I take three times a week and a series of IV infusions which I receive either at my doctor’s office or at home via a nursing service on an average of at least 1-2 times per month.  After my initial attack, I experienced a gradual partial recovery from the symptoms over a 6 month period.  I have had several repeats of these types of attacks over the following years in which I lose functions and then get either partial or full recovery over a several month period.

 

How the Team Came About

In late 2002, I found out about the MS Walk at an informational rally held by the NMSS in which organizers and other team captains spoke.  In particular, I was greatly inspired by the courage of a teenage college girl named Beth Ann Martin who had been hit with the disease about two years earlier.  Beth Ann fought back and organized the Walking Heart n’ Soles for Beth Ann MS Walk team.  She explained that her first focus was on letting everyone in her school know her problem and organizing as many friends onto her team.  I was amazed at not only the resolve of this young girl and willingness to open up to so many so soon, but also her energy and organizational skills.  From what I recall her team raised about $10,000 in its first year and significantly more in its next. 

 

Up until this point, I had many fears about how I would be perceived both socially and in the work place if I were to make my medical condition public knowledge.  So I had chosen to only confide in my family and a few guarded friends.  Listening to this college girl shamed me.  I realized that I could’ve been doing the world a lot better by revealing my disability to raise consciousness for this disease and then use it to do something about it.  I felt as if I had been hiding in the closet for my own selfish reasons.  It was at this moment the Old City Posse MS Walk team was born.

 

Thanks again to my team.  Your efforts and enthusiasm inspired me to build this site, run the team and fight the good fight.   I look forward to seeing you year after year.

 

 

OCP: Year XI – For My Future Son (written 4/25/2013)

My first born son is due in August and l am juggling lots of related and unrelated balls.  This year I dedicate the Walk to him; Robert Caruso III (RC3).  I hope to create a world in which he will not have to fear having MS.  Unfortunately, I did not have time to make shirts this year with everything going on.  So this year is "OCP T-Shirt All Stars".  Not sure which one I am going to wear.  May kick it really old school.

 

OCP: Year X – In Remembrance of Evelyn Seddon

We dedicated this year's Walk to my grandmother.  She passed away last year just before the MS Walk.  This year's t-shirt will had her initials on it and sported her favorite color, blue.  We miss you grandmom and were thinking of you the whole day.  This was the first year we did not have enough Verizon employees walking to get the match.  As a result, our total dropped to $6,500 and we did not qualify for the Mission Possible award.  Nevertheless, we were still one of the top teams for the Art Museum Walk and I am extremely proud that our cumulative total is nearly $160K.

 

OCP: Year IX – The Year of New Treatments

Our beloved grandmother, Evelyn Seddon, passed away a short time before this Walk.  So it was a very hard to work on this one; we did not bother getting t-shirts.  Despite living on fixed income, she donated $100 per month to the NMSS to support my battle with the disease.  In lieu of flowers, persons were asked to donate to the Walk.  The result was that we raised another $18K bringing our cumulative total to over $151K. 

 

The first ever oral MS drug just hit the market that year and there were three more on schedule to be approved.  This will practically double the number of treatments available for MS victims in a single year.  Our fundraising efforts are paying off.

 

OCP: Year VIII – The Drum Beats On

Our team raised $16K to bring our cumulative total to over $133K.  I am encouraged by the new MS drug that hit the market named Ampyra.  It was approved by the U.S. FDA in January for its ability to improve walking in people with any type of MS and is now available by prescription. This is the first therapy specifically approved to treat a symptom of MS, and it represents a big step forward for the many people who may benefit. I hope we can all build off that momentum this year as we progress farther walking towards a cure.

 

As for the website, I have replaced the slide show with video footage I took at the Walk.  I think this brings the website to the next level and I hope everyone enjoys it.

 

OCP: Year VII – The $100K Grand Slam Dunk

Going into the year, the cumulative total raised by our team over its first six years was about $98K.  We smashed the $100K mark by raising another $19K.  We wore commemorative t-shirts to celebrate the accomplishment that featured a logo of a $100,000 bill.  It was a play on some research I did in which there actually was a limited number of $100K bills printed by the Federal Reserve.  There were never distributed to the public but were rather used internally when they shifted the monetary system away from being backed by gold.  The bill was printed in an orange color just like our t-shirts were except that ours said Old City Posse and was signed by me instead of Franklin Roosevelt’s Secretary of the Treasury.  In terms of the website, I put together one of the largest slide shows ever for the 2007 Walk with 32 slides in total. 

 

OCP: Year VI – Return of the Posse

This was another landmark year for our team.  We raised our year over year funds raised to over $22,000.  Our six year cumulative total is now somewhere over $98,000.  The reason I say, “somewhere over”, is because every year I round down the totals to nearest $1,000.  So if you count up each year’s total it comes out to $98K which is what I consider the official total.  Once the year ended, I could only be more excited about next year and breaking the $100K mark.  This was also the first year that we had professionally made team shirts.  This was in no small part due to Lynn Grasela’s initiative in finding a place that could do them for us at a reasonable price.  The shirts were royal blue with a picture of George Washington and Ben Franklin signing up for the Old City Posse.  Additionally, Ben is seen flying a kite sporting a colonial era American flag with the, “Old City Posse”, written across it.

 

As for the website, I pretty much streamlined the photo gallery slide show at this point and can build them more quickly than in previous years.  However, they still take a lot of time and have always held up the website ramping up for a new year.  So this year I took a more pragmatic approach.  Instead of having one really long slide show, I broke it up into two different galleries.  That way I was able to put the initial website up more quickly and then add a second gallery as we got closer to the Walk followed by sending email notifications.  It also gives me the flexibility to have separate galleries for pictures taken by different people.  I hope it will give each one a different flavor so to speak.  It is a strategy that I plan to continue going forward in the years to follow.  I

 

 

OCP: Year V – The Posse Strikes Back

This was an even more unbelievable year as we rose over $21,000 with the continued help of the Verizon Foundation.  We also rose to the third highest fundraising team in the PA/DE region.  For the first time ever, we took full advantage of the Verizon Foundation’s matching program as we reached their $10,000 matching limit.  I had known about this limit from the first year but thought it unlikely that it would ever be reached.  I take great pride in knowing that we were able to take full advantage of such a great program.  I can only hope that we can continue to do so in future years. 

 

My only disappointment was that Rob Dickson could not make the event because he was sick and in the hospital.  Luckily he recovered and I pray that he will be able to make the next one.

 

As far as the website goes, I think it was taken to a new level.  It was been increased to 47 slides making it bigger and better than ever.  My proudest part is what I did with the team picture on the first slide.  If you move the mouse over someone’s face you will see their name pop-up and a description of their relationship to persons on the team.  Too often a person only knows their small handful of friends and I am trying to improve that. 

 

OCP: Year IV – A New Hope

The biggest event of Year IV was Rob Dickson and his family joining our team.  Rob is a fellow MS victim and a very nice person who has been hit harder by the disease than I have.  He had been finishing up school to become a Radiologist prior to MS.  Thinking that he had a bright career ahead and would be able to buy a new car soon, he even donated his current car to charity to help those less fortunate.  Then the disease hit Rob.  For quite awhile he was in a wheelchair.  He fought through rehab and managed to get walking again but not like before.  He must now use a cane because of leg weakness and sporadically sudden, sharp dizziness bouts in which he loses all balance and tends to suddenly fall over. 

 

Until talking to Rob, it had never occurred to me what the physical demands are upon a Radiologist.  Now that I think back, those X-Ray films they lug around are basically heavy hunks of metal.  With Rob’s balance problems and his weakened legs, he is now no longer physically capable to pursue his chosen field.  It was taken from him by MS in the blink of an eye.  Perhaps the most ironic thing is that he neither has that car he donated to help him with his mobility issue, nor can he afford to buy one without a job.  Rob has since been trying to make sense of what type of career path he can pursue.  He has since been out of the workforce and continuing rehab.  If you think you can help with a suggestion, please contact me.  I have other friends like Rob who are in worse situations and they are the reason why I put so much effort in to The Walk. 

 

The added contributions of Rob’s family spurred us onto new heights.  We broke fifty walkers for the first time ever approaching sixty.  With the Verizon Foundation’s support, we raised of $19,000 for the year.  Previously we had never broken $16,000.  We climbed a little further up to the area’s PA/DE list of Top Ten MS Walk teams. 

 

OCP: Year III – Revenge of the Posse

I decided to take it a step further with this website I constructed.  It is a homage to my team.  It is a place where their achievements are recorded for all to see, a repository for snapshots to remember the events, and just a way for me to say thank you for everyone’s hard work and support.  I received a lot of positive feedback on the site.  A lot of people especially liked the humorous slide show I made from the previous year’s Walk pictures.  In 2005 the site propelled the team even higher up the MS Walk top 10 list.  The team broke the $15,000 mark received the Mission Possible award for a second year in a row.  Once again we had 40+ walkers at the Art Museum.

 

OCP: Year II – Attack of the Posse

I was much more confident this time around and was determined to launch a full campaign to include everyone I could think of.  I revealed my condition and asked for support via emails to large numbers of work colleagues and friends, on personalized posters hung up in my condo building’s lobby, on several floors of Verizon locations, in the local coffee shop, and to whoever I knew that would be interested in hanging the posters up at their work place.  It was nerve racking to come out so fully, especially when happening to bump into someone while they were reading one of my posters.  But it also had its rewarding share of “feel good” moments as well.  For one, I was amazed at how many people I knew who came back to me with support saying that their own family was affected by this disease and how happy and hopeful it made them to see me doing this.  And another great feeling was to make new friends out of strangers who decided to walk on my team for helping their own families as well.  The best part though for both years was and will always be the morning of the walk.  The first year I was deathly afraid no one would show.  I kept comparing it in mind to throwing a party just to see no one show up because they all found something better to do.  This time around though, I had no time for thinking such thoughts as I was trying to find and organize 45 people in a crowd of over a thousand.  That was one of the best rushes of my life.  That moment made it all worthwhile.  As for fundraising, I had made sure that I had got the required number of Verizon employees this time around making the team independent this year.  The total raised came out to just over $14,000 scoring OCP the Mission Possible Team plaque which is the highest recognition the NMSS can award a team.  OCP had also become the 4th ranked team for the Philadelphia Art Museum site and the 9th ranked MS Walk Team for 2004 (for the PA/NJ chapter or all US? – I can’t tell from the ambiguous NMSS source but click on this link to see it for yourself - I’m guessing it’s for PA/NJ which is still pretty good and two just two spots behind Beth Anne!!).  In my view, that adds up to two pretty successful years.  Much more successful than I had dared to hope for but nevertheless still strived to attain.

 

OCP: Year I – The Phantom Posse

Deciding to do something is often the easy part, in comparison to the actual doing which is usually wherein the real challenge lies.  Likewise, doing the whole disease revelation thing still felt terribly awkward despite having decided I absolutely needed to do it.  The worse part is always seeing the simultaneous looks of fear and helplessness on your friends’ face as you tell them.  So for OCP’s first year, the idea was to start small with “Baby steps.” (Hey! - What About BOB, right?!? J).  So I started off recruiting my family and the few guarded friends who already knew my situation.  Then I started the tougher part of revealing to a select group of other friends whom I had still concealed the situation from.  It was probably somewhere between one or two dozen.  This way I could gauge their reaction and get an idea of what to expect before opening the dam completely.  The idea for OCP: Year I was to just start the ball rolling.  And roll it did – mostly to the credit of my family and friends who had no issues with asking persons for fundraising support.  At this point, I honestly have to admit that this was still somewhat outside of my comfort zone.  More importantly though was that I found out about my corporation’s team matching program offered through the Verizon Foundation.  This generous program would potentially match our team’s fundraising total.  Although, we didn’t have enough time to get the prerequisite number of employees on the team, I was able to donate our team’s fundraisings to another team that did.  Thus our total fundraising was matched and our final tally rose to about $7,000 with 24 walkers representing for the Posse.  Although officially our money went to another MS Walk team, we had actually raised more than any other rookie team in the area.  Not bad for Year I. 

 

 

If you have an interest in joining or sponsoring our team to help achieve this, you are more than welcome to join us.  Just peruse through the main page for details or if you need more information feel free to contact me via email at BobCaruso@oldcityposse.org.

 

Bob Caruso

OCP Captain

 

P.S. Thanks for your courage Beth Ann.