Perspective is almost everything.  Half empty or half full.  That goes with almost every situation and circumstance.  In my condition now I don't mind things as much as when it first started happening.  Example: I'd wake up really early like 4:00 am with the strongest urge to poop.  No warning just the 11th hour urge.  I had no chance of making it to the bathroom with my stiffness and difficulty getting out of bed.  So there it is, MSA rears its ugly head.   But I don't pay too much mind to it anymore.  Too many  more important things going on today and every day.  Life, family, friendships especially the one with  my savior Jesus.  He gave me a real angel in  my wife.  Too much to be grateful for.

     Today, March 1st, is the beginning of the March Awareness Month for MSA.  As many of you already know, this is a rare disease with no cure.  Partly due to the lack of funding for research.  This March marks the 4th annual Multiple System Atrophy Awareness Month. Miracles for MSA urgently request public support to create greater awareness of the need for research funding to aid in discovering the cause and cure of this fatal neurological disease. 

       Miracles for MSA request public support in spreading the word about this rare and fatal neurological disease and the desperate need for research. Time is running out for those currently diagnosed.

here are some links.

 http://www.msaawareness.org/

http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

     Please just take the time this month to post and spread the word, the links to friends and family so that somehow we can find a miracle.  And as always thank you for your support.

     Again, we've been deferred for many obvious reasons of posting and updating our blog.  So here we go again.
     Lately, it seems that the MSA is taking a back seat to my heart as well as the excruciating and debilitating pain I've been experiencing.  The pain is in my neck shoots down to both arms.  I've recently visited a pain management doctor because my primary physician can't seem to be able to manage the pain.  I've taken cortisone shots, in my shoulder and neck--to no avail.  The most recent has been now morphine which basically seems to take the edge off but it causes me to have difficulty breathing at night.  My tongue has been somewhat swollen and I suffer from dry mouth.
     As for my heart, after an echocardiogram and blood work it seems that my heart remains pretty much unchanged from pre-op except for the repaired mitral valve.  My heart is still not working at our desired capacity of 45-55% (which is the norm) and it shows that the heart is still enlarged.  My new heart specialist feels that we should start these new meds so as to improve the condition of my heart.  The desired effects will not be known for at least 3 months.

Dear Friends and Family,

            Normally, we just send out a Christmas card but this year things were a little different so we decided to change things up and send out this note instead. 

            We’ve celebrated Jessica’s 16^th birthday.  That was a very special day for all of us here and we were very grateful for all of you that attended. 

            This year Isabella started Kindergarten.  She’s done amazingly.  Her teacher says she’s very bright and hardly ever has to explain the work to her.  However, her teacher does complain that she doesn’t finish her own work because she’s too busy helping her classmates with theirs.  She’s too much.

            Christopher continues to excel in school.  Though he was a little behind, his scores on the state’s exams are OK considering his difficulties. One of his most special skills is that he is a powerful swimmer.  He has no problem getting through the waves and out past the breaks.  It is amazing and fun to watch.  Two summers ago (2011) we stood at the Jersey shore (thanks to Kenny and Christine) until the last day before we had to evacuate because of Hurricane Irene.  Chris was still able handled the waves and swam.  I tried but I got wacked.  The wave pulled me down and then out, then to the shore, I get pulled back out to the water again; this happened back and forth three times.  And throughout the whole time I hear Chris laughing the most hearty laugh I’ve ever heard from him.  Then he tells me after I finally escape the wrath of the waves, “do it again!!”

            Sylvia was tested beyond comprehension this year.  On top of her responsibilities as mom and homemaker, she became the house custodian, landscaper, grocery shopper and part time nurse and gopher.  And now she’s a contractor; she oversaw about a ten-member crew to successfully upgrade the house to meet my handicap needs.  Before that she organized a very enjoyable fundraiser without ever having the experience doing one before.  Throughout all this she maintains her advocate label for the medical and educational needs of her family.

            My year was a bit quirky.  Aside from my illness, I had to have open-heart surgery and I came out of it a bit psychotic.  I actually kicked two nurses because I thought they were trying to kill me off in a way that would look like I did it to myself. I had so much pain medication that I started hallucinating.  It was like I was on LSD.              Now its Christmas, our favorite time of year. We eat great food, share fond memories and stories and forged stronger bonds with our friends and love ones.   We do this in part to honor the birth of our savior, Jesus Christ. 

We’d like dedicate this Christmas to our very special sister and wife to John Caban, Elsie Caban.   A truly loving and thoughtful woman.  A woman who made us all feel

special and unique with her gift giving perfection. Elsie didn’t give you the most exquisite looking gift because you were someone of stature; she did them her way because we all were persons of stature to her. Gift giving holidays with be lacking from now on.  Rest in sweet Peace, Elsie, we love you.

"When you have a disability, you have two things to deal with: your own experience, and everyone else's attitude toward your experience. " Michael J. Fox.  I read this and realized how true this was for me too.  

Read More http://www.golfdigest.com/magazine/golfers-who-give-back/michael-j-fox#ixzz2EEyO3Ldr

So ...working to get my ramp done as well as the bathroom so that it is all handicap accessible before Marco gets home.  We're also looking into putting a stairlift to go from the main floor to the basement apartment because Marco can get all his therapies there and he has his privacy too.  Looking forward to getting it all done....

Marco is still in rehab at the hospital.  The therapies are daily and are intense.  But he's a trooper and he's moving along nicely.  Hope to see him home soon.

Ok, so here's the latest. Marco is recovering nicely....Yeah!! He's in Rehabilitation at the hospital.  We decided to stay at New York Presbyterian as all his doctors can follow him there if they need to.   He was moved into rehab on Saturday night.  I had gone up with the kids to visit.  And also to visit were Mima, Lillian, Eddie, and Baby Robert.

Yesterday, we took advantage of the beautiful weather and went to Schmitts Farms.  Along with me and the kids were Christine and Christopher Braun.  We did the corn maze, hay rides, bouncers and ate candy apples.  Then headed off to the Oyster Bay Fall Festival to eat raw clams, sweet corn and steak-um sandwiches.  It was a wonderful day!

I know many have looked on this blog for an update but I had just been updating FB, and by email and text.  I will now recap this weeks' agenda:

Monday October, 1st    Hi all, just spent the day with Marco. Hilda (his sister) and John (his brother), were also there for the whole day. Later, we were joined by Lilly, Eddie, Angel, and a very nice and unexpected surprise visit by Balfe. Marco looked good and is as ready as he'll ever be for his surgery tomorrow at 7am. Please continue to pray for him. The only thing that keeps resonating with me is "If God brought you to it, He will bring you through it" hugs and kisses to you all and a big one for my hubby. We love you Marco!! We're all pulling for you! You have no idea!!

Tuesday October 2nd   Day of Surgery.  Woke Up at 3:50am to go to the hospital and be with Marco.  Arrived at hospital about 5:08am  (amazing the difference with no traffic--even got parking quickly)  Was there with him before they rolled him in at 7:10am.  Did not hear from the doctor until about 12:10pm  ---yes, I was a nervous wreck.  But before this, I received a call from Isabella's kindergarten teacher to learn that the day before Isabella said to her that her father had died.  Well she says "Isabella, I don't think that's true why are you saying this?" and Isabella responds "because he's in the hospital".  Well, of course my heart drops I've been holding it together pretty well for a long, long time and I lost it.  Started to cry while on the phone with the teacher and explained that I was in the waiting room and my husband had just been taken in for heart surgery.  She apologized(as she didn't know that this was all taken place)  which is when I proceeded to explain why I believe Isabella was thinking this way.  My sister-in-law, Elsie (Marco's brother's wife) had been in the hospital for quite some time battling cancer that had spread all over.  She eventually passed about 2 weeks ago and I tried to explain this to my children.  Well, I believe that Isabella was putting things together in her own little mind that 
this would probably come to pass with her Dad too.  Well, I was a mess---cried like a baby.  Looking back at it all,  my childhood upbringing(not ideal--very diffficult), my employment at the World Trade Center,  my challenges with Christopher-my son born with seizures, and now my husband Marco--who's athletic, health cautious, non-smoker, good husband, terrific father gets diagnosed with a devastating disease Multiple System Atrophy and then now has to have open heart surgery for Mitral Valve Regurgitation--I just felt like this was just cruel and unbelievable.  That we would have been given so much to handle---it's just not fair.  It hurts so much.  It breaks my heart to even watch how Marco has become so frail and dependent on others. This should not happen to ANYONE!

But let me get back to the surgery.  At 12:10pm the doctor all went well with the surgery, mitral valves were repaired not replaced.  Thank God!  But I would not be a to see him for a few hours.  Hilda and John (Marco's sister and brother came in to wait with me).  We didn't get to see him until after 3pm from 7:10 when they rolled him in. Yes, nerve wrecking.   Hilda and John left at about 4pm and I left only to return back to the hospital out of guilt I guess.  Just couldn't leave.  Anyways, I waited until about 8:30pm when he was awake and conscious, squeezed my hand and then he waved me off. He knew that I had been there the whole time. It was a very emotional day to say the least, but I know that God was there with him and us. The plans are to extubate (take the tube that's breathing for him out) today.  
Wednesday October 3rd  Well,  Marco tells me when I arrive at 1pm due to horrific traffic (2hrs total in traveling and looking for parking) that they extubated him at about 3am and that he was in terrible pain, that they'd given him a button to push for the morphine but he had not even known of it since he was still feeling the effects of the heavy medications used to sedate him.  He said that he asked for me several times and no one phoned me.  They had shut the lights off and told him to go to relax and go to sleep.  At around 6am was the next time he saw them.  Like I said I arrrived at 1pm to find Pastor Mena and Mr. Swift there and Pastor Mena said that Marco had been complaining of pain.  I then spoke to them and they said they don't wake up patients from sleeping to remind them to push the button and that they are not allowed to push the button for them either.   So, he just had open heart surgery and was not given a drip because they don't do that, they only give the button so that he can press as he feels necessary.  Marco was so afraid that he did not want to stay there alone not even for a minute.  I then called Hilda told her what happened and we worked it out that I would stay with him until she got there and alternated.

Thursday October 4th  Came in at about 11am he had just been transferred from the CTICU to a regular room.  All tubes from his neck were also removed and the only tubes left are the chest tubes used to remove fluid build-up.  These should come out on Friday depends on the doctor.  Left at about 6pm so that I can try to catch up with my kids before they went to bed.  Missed them terribly.  Luckily, Mrs. Chris Braun (as Christopher Calls her) has been stepping in, reading  and putting them to bed at night.  They only nice treat out of this has been that the kids have enjoyed having my Mom and Dad and Titi Hilda sleep over.  It's been an emotional and exhausting week for all of us.  Hoping that he has a speedy recovery.  

Just wanted to let everyone know that Marco has been admitted to the hospital.  Although, he had a great day on Sunday-he was tired toward the end.  
Monday morning he seemed light-headed as he had been the last week during his hospitalization but his medications have not caught up to the level needed to stabilize his blood pressure.  Around 10:30 Marco came up to have breakfast, sort of choked on his food and his pressure dropped to about 69 in which case we were going to rush him to the ER but I knew he had just had a stressful choking episode so we needed to let him get to breathing normally again, lay him down and monitor him.  And that's just what we did and he was fine the rest of the day.
Tuesday morning, he slept a little more as he had a bad night waking up a few times to go to the bathroom and even a catheter at one point.  He got up about 11 and again he was ok went to the bathroom and wash his face and he immediately felt faint, called the aide that was there with him and when I came down he was slumped over on her and she was trying to take his pulse but what not getting one???  I then took over held him up, saw that he was not responsive and called 911 (and then called Christine Braun who had been there earlier to check up and see how he was doing).  He could not move his body at all, he couldn't speak but he did blink.  I offered him gatorade, and when I brought it to his lips he was trying to drink so I knew that he somehow knew what was going on around him.  He drank a bit and that helped him to come back and I put his CPAP mask on so that he could get some air forced in and that helped until the EMT came and they rushed him to Winthrop hospital about noon.   At Winthrop, they were trying to just stabilize and monitor him until they could get him transported to Columbia Presbyterian in Upper Manhattan.   Finally, at about 8pm I spoke to the doctor Sandeem(PA) who spoke to Ajemian (PCP)who had talked to the Cardiologist Mancini and they decided to admit him overnight at Winthrop and to try to get him transported the next day.  I  finally left about 9:30pm and he was still waiting for a bed.  The plan I'm hoping is to get him stable enough that he can then proceed with the open heart surgery for the mitral regurgitation (leaking valves).  Marco however doesn't feel (as I do too) that he is not stable enough (at least right now) to undergo this surgery.  We'll see what happens today.

Hi all,

First of all I just want to say thank you to all that came and made the fundraiser event such a big success.  We could not believe the HUGE turnout--it was indeed standing room only.  Marco and I were both so overjoyed to see so many familiar faces and even new ones that came from not just the neighborhood but different states as well; Marco's co-workers (even his Boss from his first job--which my expression said it all) and some of his childhood friends made it even more special.  
We are still trying to take it all in.  
We were so overwhelmed with all the expressions of love.  That place was just one big, happy, loving garden.  You could just feel the love flowing and the positive energy there.  Thank you for the generous gifts and the beautiful cards and words written that so encouraged us.
We truly felt the love and the support from all of you.   
And a special thank you to TEAM MARCO:
Words can't express the gratitude I feel when I think about what you guys have all done.  You really helped me put this event together and made it what it was--- AWESOME!!
Thank you for sacrificing your time for us, you don't know how much of a blessing you are in our lives.

My son celebrated his 11th birthday yesterday, September 21 at his favorite restaurant, Shiro of Japan, with all of us and his Godparents and a very close family couple.  He was so happy he would do anything you asked of him.  He was like the Godfather on his daughter's birthday; he couldn't refuse any requests made of him.  I almost didn't make it to his birthday celebration.  I was hospitalized on  Monday the 17th.  The day before, Sunday morning, I blacked out in my bathroom, twice (I sleep on a hospital bed in the basement).  I was about to catheterize myself so I was sitting on a chair in front of my American Standard toilet (rather have a Kohler) but I never did it.  There I was just slumped over on the chair.  I woke up with the catheter still in my hand, unused.  Worse yet I was paralyzed.  I couldn't move my arms or my legs and my chin was in my chest (my skull felt like it weighed 100 lbs).  I reached for the phone and then stopped.  I felt like I was just gonna roll off, in slow motion, right into the toilet.  It's tough enough for me to get off the floor after I've fallen.  I don't want imagine what would have happened with my arms and legs barely moving.  After a bit of time I took some breaths and tried again, real slow and got it.  I used the intercom and called my wife.  She came down and I asked her to hold up my head.  She did.  Now all this time I was feeling really light headed.  My vision was very blurry.  My vision is like looking at snow from the TV screen when there is no reception except its not moving.  While she's holding my head I black out.  She calls the ambulance and when they arrive I convince them to let me stay home and they do.  The next morning I was sleeping upstairs with my wife.  I went to the bathroom and was afraid I wouldn't make it back to bed so I asked Sylvia to help me back.  Just as I'm about to get in bed my vision goes completely black.  I laid down and felt such a relief and soon thereafter I was OK.  Well, that was it, we called my autonomic neurologist and cardiologist.  The cardiologist got back to us first and implored me to admit myself at Columbia ER.  I did and lucky for me the surgeon was away.  I say lucky because I want to do a thing or two with the family before I have open heart surgery.  The cardiologist wants me to have the surgery sooner than later.  God willing it'll be a non-event.  I have a DNR statement for my healthcare proxy.  But my autonomic neurologist doesn't think there's a concern with my breathing muscles once they take me off the ventilator after the surgery is done.

Yesterday September 14th I was in the Upper West side of Manhattan from 9am till 5:30pm.  I started out with three appointments at Columba Presbyterian with the neurologist, urologist and cardiologist.  The most important one was meeting with a cardiologist.   I had blood work and then an echocardiogram.  The 4th appointment was with the heart surgeon.

Heart surgeon believes I need heart surgery. They'll confirm more next week when the actual echocardiogram report comes in. We got back about 6:30pm  Long and exhausting day!  Sylvia, my dear wife was at one point looking for parking for over 3 hours; brutal.  

Ten years ago on 9/11 many fathers, sons, mothers, daughters, brothers & sisters were killed—others, like my son Christopher and I were spared but still scarred. 

But our loved ones will not be forgotten, they will live on in our hearts.

And today as I thank God for another day, for the love and support of my family and friends,  I pray for the strength that only God can give to bring peace and comfort into our lives.  God Bless you today.  --Sylvia

My name is Marco Caban and am married to my wife, Sylvia for 19 years this August 2012 and we have 3 children ages 5, 10, 16.  Though we didn’t plan it this way things worked themselves out that Sylvia was able to stay home since September 2001 to care for our 5 year old daughter and newborn son.  Sylvia was having a difficult pregnancy with our son that summer.  She was suffering with a severe case of sciatica.  Nevertheless, she continued to commute via the LIRR and NYC Transit. She was supposed to work until September 14^th, instead her OBGYN had her go on bed rest due to some complications with the pregnancy.  That kept her home from her job and the tragedy of 9/11 at the World Trade Center.  Needless to say we thank our Lord, for everyday is truly a new day.    Our son, Christopher was born the 21^st of September 2001.  We call him our miracle baby. 

But things weren’t so easy.  Christopher was born with some breathing issues that we later found out that were caused by seizures amongst other diagnoses. We were now faced with some really difficult decisions. Our lives had been flipped.  When the time came for Sylvia to return to work we felt that she should stay home.  We agonized over this decision for the entire time she was home.  This was a huge decision because her income was much higher than mine. But again, God was faithful.  That winter, I received a pay raise to help us make ends meet.  Financially we were OK.   Today Christopher is a special needs child with some cognitive delays but he is a true joy to have around. 

Now it’s July 2007 and we just had our third child, Isabella. I began a new job, at the Federal Home Loan Bank of NY (“FHLBNY”), which was a very well run bank with the implied credit of the US Government, so I knew it wasn’t going anywhere.  I felt things were in place for my family and I.  Life was good.

In May of 2010 I received the devastating news that I had Multiple System Atrophy (MSA).  Receiving a diagnosis of MSA was both heart stopping and overwhelming.  It took the doctors about 4 years to determine what was going on with me.  There were so many questions and no answers.  The worst answer the medical community does offer is that MSA is a progressive neurodegenerative brain disorder. The disease tends to advance rapidly over the course of 7 to 10 years, with progressive loss of motor skills, eventual confinement to bed and death. There is no remission from the disease. There is currently no cure.  I’m at the point where I find myself unable to do the simplest of things; bathing, dressing, walking, cutting my food and more.

And just when I thought it couldn’t get worse, just this month August 2012  I end up in the hospital for 10 days with a pneumonia which actually led to a new discovery-a leaking valve in my heart.  I now am a candidate for open heart surgery.  The worse part is that according to the doctors it has nothing to do with my underlying condition, MSA. 

I think the worse part of it all is knowing that I will not be around for my family. That my wife will have to continue to fight for our special needs child and raise our two other children without me.  I feel I’ve been cheated out of life and worst of all that my kids and wife have also been deprived of special memories such as playing catch with my son, walking my daughters down the aisle when they get married, and growing old with my wife.

One of the major purposes of this fund-raiser is to help me live out the rest of my life as full and as normal as possible. But, also to bring awareness to this devastating disease.   We’d like to be able to share as well as receive information about MSA in order to be better able to cope with the day-to-day challenges of living with MSA.

Some of the needs that will help my daily challenges:

Around the home:

·      Elevator for wheelchair to have access to the basement as well as main level.

·      Ramp to have access in and out of the home.

·      A handicapped accessible bathroom.

Transportation needs:

·      Wheelchair Accessible Van

It is not in our nature to ask for help and many who know us know this to be true.  But as we’ve been told repeatedly, people want to help us.  There are people that have access and the capability of making these sort of life-changing events less devastating and manageable.   It is because of this reason that we are stepping out of our comfort zone and asking for assistance in this very difficult time. 

We ‘d like to thank you in advance for your sincere concern for our family.   And we are hopeful for wonderful blessings to come.  

Just finished massaging my lovely wife. What a work out. I got beads of sweat rolling down my face. Better than using that silly putty the therapists give you. Boring!

It's great to wake up and see your children cheerfully getting ready to get off to their first day of school.  The chaos of eating breakfast, washing up afterwards, brushing their teeth, getting dressed, and slipping on their backpacks to then walk off all spiffy and with that youthful energy.  Sylvia doing it all to then doll herself up to go out and take Bella to school.  She is the 8th Wonder of the World.  To me, she's the cat's meow.

Welcome to my blog.  We'll be using this blog to keep everyone updated on Marco's journey with Multiple System Atrophy.