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Archive for March, 2011

I am stealing a piece of information out of a recent issue of New Mobility magazine. They wrote such a good description that I thought I’d just quote them instead of paraphrasing. Here it is:

“The dregs of society who park in disabled parking spaces will have a tougher time getting away with their sloth, thanks to the new Parking Mobility App. This genius app allows users to take multiple pictures of the offending car and submit them to the local municipality. Learn more about it at http://www.parkingmobility.com.”

As soon as I read this, both my husband & I signed up for the app. It’s quick and easy to put on any smart phone. I haven’t actually used it yet, but I will as soon as I see an offender! I can’t wait!

In addition to reporting the incident to the town in which it occurs, the website allows for donations to be made to charitable organizations who are registered to get part of the proceeds when tickets are issued for infractions. Of course, I submitted Push to Walk, and we have been approved. We can now receive a portion of the fees paid for handicapped parking tickets.

I can go on and on about all the problems that drivers with disabilities face when they need to park in public places, and often I do when someone tells me about a recent problem. Here’s a few of my pet peeves: It is obvious to me that way too many placards are issued to people who don’t really need them; that there is no way to control the use of a placard when the original owner has died or no longer needs it; that there is no difference for people who use wheelchairs and need the access grid for entering and exiting their vehicle; that people park in the access grid; that a lot of people don’t know the access grid means “no parking;” and on and on……abuse of this system is on-going and not going to get any better without someone at the “top” (somewhere in our bureaucratic government) willing to take a stand and make a difference.

Let’s all put our heads together and battle this problem as a group. Taking pictures with the Parking Mobility app is a start. Passing this info along to as many other people as possible will also help. Telling groups of people and agencies about it can help, too. If you have any ideas, I am all ears! Please let me know!

www.parkingmobility.com

Cynthia

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For the past 3 months plus now, I have been running and training for the NJ Marathon on May 1st. I’ve been feeling healthy and fit. I’m eating better (most of the time) and sleeping better. Even though I would say I would run and train “as long as my body held up,” I never really thought it wouldn’t. Whoa! Then came the morning after my 18 mile run, which was the day after the Push to Walk Poker Tournament. I woke up in a LOT of pain, my back hurting and every movement made me wince. OUCH! I guess I over-did it……….

For several days, now, I have been stretching, icing and putting Aspercreme on my back. Each day, I feel better and better, but I’m taking it really easy. No exercise at all on Sunday and Monday. A short 30 minute walk at low speed on the treadmill on Tuesday, and a 30 minute, not very strenuous ride on the exercise bike this morning (Wednesday). Feeling OK, but fearful that it will start hurting again.  This pain scared me like no other pain has in the past. It was interrupting my training! I was hurting! I wasn’t even thinking clearly. My mind was so focused on the pain that I couldn’t think of other things. Not good for working. I need to train; I need to run this marathon…………think of the whole Team Push to Walk and all the people involved. It’s not just me anymore.

I want to walk/run tomorrow on the treadmill and see how I feel. I am promising myself to take it easy and not run thru the pain. I will see how I feel and plan accordiningly.

What a wake up call this was! It brought back horrible memories of back and neck pain. I hadn’t felt pain in so long, I had forgotten how debilitating it can be. But then it made me think of so many people I know who live with pain on a daily basis. I was fortunate and found a solution that worked for me in Dr. John Sarno’s work. Margaret, Darren’s neuromuscular massage therapist, recommended his books to Darren, who then suggested them to me: Healing Back Pain and The Mind/Body Prescription.  I have found that his techniques really work for me. Not that I think the pain I have now is related to stress (although it could be compounding it), but the idea that I have found something that works for me. So many other people have not found a solution, and especially for people with spinal cord injuries, they may never be relieved of their pain. So I count myself lucky, once again, that my pain is temporary and I can get back to running very soon. I worry about so many others whose lives are consumed by pain, preventing them from doing so many things they want to do. It brings me back to reality, and reminds me of how lucky I am to be healthy and well.  

Hopefully I’ll be blogging very soon about my next run! Cynthia

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As I continue my training for the NJ Marathon on May 1st, I mapped out a route of two segments of 9 miles each. There would be about a 10 minute break in-between, to transport me from one location to another. In the past, I have run this stretch of road, and it is just too dangerous. So my husband met me and drove me from the end of the first 9 miles to the beginning of the next. It was kind of brisk weather – mid 30’s – and sunny. I was psyched for the distance and liked the route I had planned. I overdressed (as usual!) and had to ditch a layer and my hat halfway through. Otherwise, the run went well! I was even able to push myself at the end, with the saying “run, Cynthia, run” (as in Forrest Gump) keeping me going.

During this three and a half hour activity, I was reviewing everything about the Texas Hold ‘Em Poker Tournament the night before. The planning was a little easier this time around, as usually is the case, when you are repeating an event. I learned from last year to have more helpers, and that worked out great. I had the best people helping, offering to do whatever needed to be done, and when they finished one thing, they jumped right to the next task.

As the players came in, it was nice to talk with those I knew, thanking them for supporting Push to Walk once again. I met some new people, too, and enjoyed talking with everyone. With more help this year, I was able to “work the room” and wasn’t tied down to a job for the evening. That was nice!

What I thought about most during this run, though, were the people in chairs who came to support our cause, even though they are not clients of Push to Walk. One guy came all the way from Flemington, another lives in NYC and had been traveling most of the month of March. He came back early just so he could come to our event! Between the long drives and the planning it takes to do extra events like this, I was so appreciative they made time for Push to Walk! And several of our clients, too. It was great to see them there, having a good time.

These thoughts morphed into thinking about so many other people I have met who use wheelchairs for one reason or another. In  most cases, a chair is being used for a spinal cord injury, but not always. I have met some wonderful people and their families, all dealing with their injuries and their challenges in individual ways. Some seem to have it all figured out (I don’t know if they really do, or just seem that way), some have challenges that are on-going, persistent and difficult. As I meet each person, I enjoy talking with them, learning about them and spending time with them. It doesn’t necessarily involve any conversation about why they’re in a chair. Sometimes it comes up; oftentimes it doesn’t.

In any case, I guess my mind was quite occupied with these thoughts, as my 18 miles didn’t really seem that terrible  (until the next day that is, which will be the subject of my next blog!). So as I reviewed the success of the event, the people who helped and those that supported us, I was grateful that Push to Walk has so many “friends.” Thank you, friends – all of you – for helping us accomplish our goals. And thank you for the motivation to reach my own personal goal – running a full marathon in just 5 more weeks!

Cynthia

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This past Friday night, Push to Walk hosted its 2nd Annual Casino Night/Texas Hold ‘Em Tournament. We had a great turn-out and were very happy with the event. Scott Barna, Donna Christman and the entire staff of Route 23 Auto Mall in Butler, NJ made this event possible. Scott is very generous to Push to Walk, donating the use of the dealership, his staff, getting players to attend and advertising the event. We couldn’t do it without him! Thanks, Scott!

As we learned last year, the people who come to play are quite an eclectic group. They come from all walks of life, and are attracted to the main prize of $5000. Some have a relationship with Push to Walk; some don’t. We hope that after attending, they’ll have learned about Push to Walk and the wonderful work we do for people with spinal cord injuries. And of course, we hope everyone who came had a good time!

We have such a wonderful group of volunteers, Board Members, clients and family members, sponsors and friends who all help with the event in some way. It is truly a team effort and one I am so thankful for.

About 100 people played poker, and as Darren ended the introductions and the tournament director instructed the dealers to “shuffle up!” you could feel the energy in the room. It was great to watch and see people having a good time. As the break drew near, people were up and about, chatting with others if they were out, or buckling down for the serious rounds to come. It really did seem like everyone was enjoying the night so far.

As the excitement built for the final table of 10 players, now there was a more serious feel to the atmosphere. The spectators were paying attention, and the players were focused on the cards. Each new round usually meant someone was eliminated, and the tension became more noticeable. With only the final 2 players left, the crowd leaned in, wanting to see what was going on. All of a sudden, it was over, and the winner was named. Wow! How exciting! Not being a poker player myself, and not understanding the finer points of the game, someone had to tell me who had just won!

Both players seemed happy with their prizes: #2 won a 55″ TV and the grand prize winner won $5000 in gift cards. In a VERY generous gesture, the winner gave back half of the winnings to Push to Walk. What a kind and caring man. He didn’t want any publicity for it; just did it quietly. How wonderful for Push to Walk and the clients we serve. How wonderful that there are so many caring, generous people in the world. With the entry fees, re-buys, add-ons and 50/50 raffle, the players were extremely generous and helped Push to Walk in ways they’ll never know. Preliminary figures show we raised several more thousand dollars from last year, coming close to raising $18,000 for the night! Awesome!

Events like this, even with the amount of work they involve, bring warmth to my heart and strength to my soul. Seeing so many people who want to help, while having a good time, too, is just such a wonderful feeling. THANK YOU to all the players, sponsors, volunteers and clients who helped make this a success.

Thank you from the bottom of our hearts.

Cynthia

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My run on Saturday was for 8 miles, which I estimated would take just under an hour and a half. I felt good as I was running, and realized that I had run continuously with no breaks for more than an hour. Perhaps it was because my mind was very focused. I had been thinking of the clients who previously came to Push to Walk but stopped coming for a variety of reasons. I had also been thinking about lots of people who had called or e-mailed but never became clients. Both groups of people made my heart sad for one reason or another.

First, the people we’ve met and gotten to know as a result of being a client – I miss them! In most cases, I met one or more family members and formed relationships with them. I learned about their family, their interests, their personal story. Every new story never fails to break my heart – there is never a “good” story about a spinal cord injury. There is always heartache and grief, which hopefully leads to acceptance on some level or at least adaptation in some sense. Everyone finds their own way of dealing with this cruel twist of fate that left them or their loved ones paralyzed.

I think of Luigi, Robert, Cindy, Walter, Matt, Lucas and Ikiyan. I think of Anthony, Heather and Carmen. I think of people who have visited us from out of town: Patrick, Shane, Brittany and Mike because they live too far away to come on a regular basis. People that I know benefitted from Push to Walk’s program, but financial concerns, or transportation or other challenges just made it too difficult for them to keep coming. I try to keep in touch with each of them as best I can, but admit that is tough to do. I don’t want to make it seem like I am “selling” Push to Walk’s program to them. I just want to know how they’re doing. I hope they are all doing well, and finding their way in this world of spinal cord injury.

There are other people I’ve spoken to on the phone, e-mailed back and forth with, and maybe even met. But they or their loved ones never came to Push to Walk. Why? There are as many reasons as there are stories and injuries. Oftentimes, it is the money, there’s no doubt about that. How I wish we could charge less for our services, then so many more people could come. If we could make our hourly fees more affordable, that would make such a difference for so many people. But until we find an angel, or substantial grant money, or win the lottery, we must charge our current fees. Even that amount of money isn’t enough to cover our operating expenses; our fund raising events are critical in making up the difference.

But I feel like I know these people I’ve never met. I know their stories, what they’re dealing with, the challenges they face. I know how many other children are in the family, how they renovated their houses, how their jobs have been adjusted, or even lost, how their spouses are coping (or not) – they have allowed me access into their personal life hoping I can help them. And as much as I do help them, I feel it is never enough. Their stories tug at my heart strings while I try to give them factual information to make their daily lives easier – home modifications, standing frames, other equipment they will need, medical supplies, insurance coverage, government benefits and more. While they may never actually come for services, I try to help whenever and wherever I can. Oftentimes, the phone conversations are lengthy, sometimes at night or on the weekends. When I give my cell phone number out, it might ring at anytime, and I try to make myself available as much as possible.

When a person calls again after some period of time has passed, I can usually recall names, where they live, date and level of injury – all without referring to my notes. Why? Why can I remember these details so vividly for people I’ve never met? I guess because we have the connection of a spinal cord injury; the common understanding of the challenges we need to face; and the need to talk to someone who understands. These people I’ve never met are part of our family now, even though they have yet to come through our doors. Some never do; some do eventually, when the time is right.

These thoughts kept me running for 8 miles, and a good run it was. As I get closer to the date of May 1st when I run a full 26.2 miles in the NJ Marathon in Long Branch, I will think of all these people, near and dear to my heart, some of whom I’ve never met, but think of nonetheless. I will be thinking of them and running for them. With all of these people behind me, I am confident I will make the distance!

Cynthia

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For all of the “political correctness” going on the world today, it is still commonly accepted to say “handicapped parking” for some reason. I know I am super sensitive to this whole issue, and I know that taints my opinions and what I’m going to write here, but I’m kind of fired up about it at the moment. But the words are not the reason I’m writing; just the reality of the difficulty that people who have disabilities face when parking in public places.  

So even though I ran yesterday and today, continuing my training for the NJ Marathon and raising funds for Push to Walk and people with spinal cord injuries, I must digress for today’s topic.

I brought my new Audi to the dealership today for a defect I consider to be an inherent fault, but the people at Paul Miller Audi in Parsippany didn’t agree. They sent me on my way with an offer I considered less than substantial, and I have resolved not to buy another Audi in the future. But that is not why I am writing this either.

Upon arrival at the dealership, I notice a car parked in the handicapped access grid. I remember seeing this on my last visit as well, but did not speak up. Definitely wrong on my part, so I was determined to say something today. While waiting to see the service manager I had an appointment with, I strolled over to make casual conversation with my salesman. I told him why I was there: because the paint job on my Audi sucks and the Audi rep was going to take a look at it. But then I said, “there’s something else I want to talk with you about.” When he asks what that is, I ask him why there’s a dealership car parked in the handicapped parking access grid in front of the building. As we walk toward the door to see for ourselves, he says, “we were just talking this morning about where to put these 2 cars (motioning toward another car nearby as well).” I said that I know I may seem overly sensitive to the whole issue of handicapped parking and access since my son uses a wheelchair, but parking a dealership car in the access grid is really wrong!

This salesman, nice enough guy, says to me “you’re not supposed to park there? It’s not the space, it’s NEXT to the space.” After I closed my mouth, which had dropped open in disbelief, I said “are you kidding me? do you not know why there are ACCESS grids next to handicapped parking spaces?” We proceeded to have a conversation about WHY there are grids, what their purpose is, why they are placed between spaces, they provide access to the sidewalk, etc. He claimed “I never knew that!”

WHAT????? Are people really this ignorant? (Apparently yes) Do they just not care (I guess they don’t).  So I “enlightened” this guy, and maybe now when he goes to the supermarket, or the mall, or the movies, just MAYBE he’ll look at one of those grids and NOT park there himself. MAYBE. Maybe he’ll actually think about a person who uses a wheelchair and how they need a little extra space to manuever getting in and out of their car. MAYBE I “taught” someone something today.

The next time I drive by that dealership, though, I’ll be sure to look at those handicapped spaces and see who’s parked there. And maybe I should send them the pamphlet that this excerpt came from:

“The striped area next to the parking space is called an access aisle and is strictly off limits for parking to everyone, regardless of whether or not they have a handicapped parking plate or placard. The access aisle must be in place in order to ensure that people who use wheelchairs have room to transfer in and out of their vehicles. Only the handicapped parking space itself is reserved for those individuals who have proper identification on their vehicles (i.e., placard, tag, or plate) indicating that they are authorized to park in these designated areas. The access aisle or striped area next to the parking space is NOT a parking space. Anyone who parks in this area illegally should be reported to a local law enforcement officer.”

Perhaps I should get a lot of these pamphlets and give them out to everyone. Just MAYBE we can “enlighten” a few more people. Wanna help??? GRRRR

Cynthia

 

 

 

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My real topic is about my friends today, but I couldn’t start writing without acknowledging all those affected by the terrible flooding in the last several days. Many friends, homes and businesses are dealing with astronomical problems as a result of the rains and floods, and I wish them all well. In addition to the local problems, my heart goes out to the victims of Japan’s earthquake and tsunami.

Back to running – I was lucky enough to see my daughter for a few hours Friday night/Saturday morning. She was home briefly before flying out to Colorado for her spring break ski trip. As I was talking to her Friday night about my run the next morning, we were talking about listening to music while running. I don’t listen to music for a couple of reasons. First, I hate having anything in my ears; second, I don’t own an iPod; and third, I don’t need yet another thing to worry about while I run! So it’s me, myself and I out there on the roads, with the thoughts in my head and an occasional song that I sing to myself. I do my best thinking – creative, problem solving, etc. while I am running. Sometimes I think about the last few minutes, and realize I have been thinking about absolutely nothing. I guess that’s good, too!

With a 3 hour run ahead of me (16 miles) I decided to think about all the friends who came to our aid when Darren was first injured. Now it is inevitable that I will leave someone out, and I truly apologize if I do. There were just SO many people who did SO much. And of course there were people doing things that I never even knew about. Some I was told about long after the fact; some I’m sure I never found out. Saturday’s run was for all our friends. As I write this, I am thinking this might have to be in 2 or 3 parts. Otherwise, my post will be like a whole book instead of a blog entry!

The minute word got out about Darren’s accident, people mobilized like I have never experienced before. As I have mentioned before, my sister and her family and my Mother, were with us as much as possible and doing things for us every minute. Our dear friends, Ralph and Lucille, immediately made us hotel arrangements, went to our house and packed clothes for us. Their daughter and her husband drove through the night to go to Atlantic City Medical Center to review Darren’s x-rays, MRI’s, etc. and started making phone calls to get the best medical care available. Carol G. started spreading the news in an organized fashion to try and reduce the number of phone calls and questions we were getting. The poor woman couldn’t go anywhere without being bombarded with questions and well wishes. Her e-mail distribution list was an amazing help, and she maintained it for months before turning it over to Medora to continue. (All of my e-mails during that time can be found on the Push to Walk website: www.pushtowalknj.org/familycorner)  Shelley and Bernie were helping to take care of our house and pool, and our shore house was looked after by Ken and Cindy. Do you know what perishable food looks and smells like when no one goes there for a while? Ken and Cindy made sure that didn’t happen, along with lots of other stuff that needed to be done there in our absence. And that’s while they were traveling back and forth to see us in Philly as frequently as possible.

Friends came to Atlantic City and Philadelphia right away. They brought food, gifts and lots of hugs. There were lots of tears and more hugs. Wow, that waiting room was quite a scene if I remember correctly. My friends Betty and Rick met me in Atlantic City almost as soon as the Medivac helicopter landed. Our friends on the boat with us that day, Joe and Gail, came as soon as they could.

Visitors included my dear friend Charlene, Darren’s friend Greg, Bob and Rob Alessandro, Bernie, Lori and others. I know I am leaving out some. The thing is that people dropped whatever they were doing to help in whatever way they could. The support was incredible and overwhelming.

When I came home for one day during Darren’s time in Philly, Carol arranged a wonderful gathering at her house for our closest friends. Not only did she make sure I ate, but that I got to see everyone at one time, eliminating multiple visits that I didn’t have the luxury of time for. She also did some shopping for things I needed to bring back with me for Darren.

The people in my husband’s office were fantastic. With their help, the business never missed a beat. They kept things running smoothly and without a hitch. John didn’t have to worry that things were being taken care of. He could concentrate on Darren and not think of the office. What a relief.

Meanwhile, at home, the Kinnelon High School Principal was taking care of things for Arianne. She was entering her junior year of high school and there were still a lot of details to be decided upon for her schedule, activities, etc. Sharon took care of everything she could. Doris Z. was planning a church service, and people started sending us things to cheer us up, feed us, and brighten Darren’s room. Friends Kathy and Berdj, and Chris and Cheryl were on the phone, offering to help, doing what they could

The timeline seems a little muddled in my mind – what happened in Philly? What didn’t happen until Atlanta? It really doesn’t matter, but it is a strange feeling in trying to recall certain events. After arriving in Atlanta, friends were pulling strings to have Devils memorabilia signed and sent to us. Not only that, but Shelley arranged a call from Lou Lamoriello, the CEO/Pres/GM of the New Jersey Devils to Darren personally. It was a call I’ll never forget, and one we still joke about to this day. It went something like this: “Hello, can I please speak to Darren?” Me – “Who is this?” “This is Lou Lamoriello.” Me – “Really? Stop joking around. Tell me who this really is.” Lou says “Really, it’s me, Lou Lamoriello, and I’d like to speak with Darren.” It was AWESOME! The man was genuinely interested in speaking with Darren and wishing him well. It was the beginning of a special relationship that brings tears to my eyes and continues to this day. While that phone call started something I could write a whole ‘nother blog entry on, suffice it to say here that Lou took a special interest in Darren, and he would call periodically to check up on him. He gave me his personal cell phone number, and told me to call him if Darren ever needed anything, including a kick in the ass to keep him focused on working hard. He is quite a guy.  

Ski friends had our favorite clam chowder from Gilbert’s in Portland, Maine sent to us special delivery. Even with the decent food we were eating, that clam chowder was WONDERFUL! It also brought back great memories of ski races and road trips. Darren’s hockey team signed a giant card and sent it to him. Cards and letters and presents were coming from far and wide.

Visitors were arranged for weekends while at Shepherd Center in Atlanta, and included Darren’s best buddies Arek and Eli, Kevin and Ricky and their Mom Judy, HS Hockey Coach Spiller, Charlene, Betty, Grandma and Uncle Tim. One weekend, I had my sister Michele, Ari and Medora visit together. We had another friend’s Jeep (thanks Julie and Mark, for the car, the visits and the burgers!) and decided to go out and about – with Darren. What adventures we had that weekend! Lots of laughs and fun times!

Oh, I could go on and on, and will continue this in a future blog. As I’ve written this, I’ve laughed and cried with the memories. But the feeling is one of such warmth and gratitude. THANK YOU, my dear friends, for being there in body and spirit, for doing all that have you have done and continue to do, even though it is more than 6 years later. You have not abandoned us nor forgotten about us. You continue to help in so many ways. Our bonds are stronger than ever, and I will be forever grateful for your love and friendship.

With these thoughts, I completed 16 miles yesterday. While my body was exhausted, my mind was energized! I couldn’t wait to start writing, and recalling all these wonderful moments. While the circumstances surrounding a new  spinal cord injury are scary and catastrophic, and the fear of the unknown overwhelming at every turn, the friendship and love helps us through each and every day.

Thank you dear friends,

Cynthia

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