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Archive for April, 2012

As part of Team Push to Walk, my son Darren will be riding his hand cycle in this Sunday’s NJ Marathon in Long Branch (May 6). He is one of 5 clients on the Team, and I have witnessed the transformation of some of them during their training. I am so proud of everyone! My husband & I have had the opportunity to ride several times with Darren as he trains. Each ride, I see him getting stronger and more prepared to go the distance. In between outdoor rides, he has been using a SCI-FIT hand bike either here at Push to Walk or at a gym near his apartment. After yesterday’s ride, I am confident in his ability to do the entire distance of 26.2 miles. I know he can do it!

What he found yesterday, though, was how important it is to be well fueled before the race! Just as a car needs enough gas to get from point A to point B, so does an athlete for an endurance event. Rest, food and hydration are all key components of a successful event. Fortunately, he experienced how he felt from not having enough to eat this week, and now be better prepared for next week. For all you athletes preparing for the big day – eat well and eat properly several days prior to the event. Better preparation will definitely pay off!

Thank you to all of our clients, and their families and friends who are participating on their behalf, as well as our Push to Walk staff and friends who are committed to our cause. So many people have dedicated their time and fund raising efforts on our behalf, and your support will enable us to offer Scholarship Funds to our clients and support Dr. Wise Young and his SCI clinical trials.

Have a great race, everyone! I’ll be there cheering you on!

Cynthia

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Happy Friday! And congratulations to our NJ Devils for getting past the first round of the playoffs, for the first time in way too many years. Go Devils!!!

When my two children, Darren and Arianne, were younger, I dreamed about going away for several weeks in the summer and traveling in an RV to see the U.S. After a considerable amout of nagging, prodding and practically begging, my husband agreed. In the summer of 2000, we rented an RV and headed cross country. It would turn out to be 17 days and a lot of fun, for most of us – varying amounts of fun at varying times would probably be an apt description! All in all, it was a great trip and provided us with great experiences, family bonding and wonderful memories. I (of course!) loved it the most! I’d like to see more of the U.S. in an RV – hopefully we will do that in the future! To plan a trip like that (for me, anyway; lots of people can just go and do, which is fine) requires a fair amount of research and planning ahead. For people with disabilities and who use wheelchairs, the need to be prepared is multiplied many times over, and requires due diligence in some cases to make sure that traveling will be enjoyable, fun and not stressful. A Push to Walk client recently returned from a cruise with her family and had a wonderful time!

Here’s a website that will help all of us if we ever want to travel around the country in an RV. This site has so much valuable information and it is so well organized and sorted. I love it! Check it out! http://rollinginarv-wheelchairtraveling.blogspot.com/p/our-motorhome.html. The author presents the information in a very well-written format, as a wheelchair user and as a seasoned traveler.

There are lots of resources out there on accessible travel and helping people have fun while vacationing. Don’t let using a wheelchair limit the possibilities. If you want to go somewhere in particular or take a specific type of vacation – cruise, all inclusive resort, etc. – there are resources out there to help! Another great place for info is United Spinal’s “Able to Travel” program (www.abletotravel.org). Take advantage of the info, get out there and GO!!  Happy travels!!!

Cynthia

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At this past weekend’s Sports and Recreation Expo held at Helen Hayes Hospital, there were a number of vendors there with wheelchairs, vehicles, sports equipment and other information and resources. It was a great combination of products and services for people with spinal cord injuries and lots of other disabilities. Some of the vendors provide equipment that would be considered “medically necessary” like wheelchairs and lift systems if a person cannot transfer him or herself. I consider driving a neccessity, but that is my own opinion. In the eyes of the funders or government systems, it is quite difficult and time consuming to get funds to either purchase a vehicle or have it modified with hand controls and other adaptive equipment. Then there’s all the “extra” kinds of equipment that are definitely not covered by insurance or other programs, but have the potential of providing exercise, recreation and social activities. That’s what I’ll focus on here today. (I do acknowledge and understand that there are many other financial challenges as well. I do not mean to neglect them, but just focusing on one area today.)

One of our Push to Walk clients attended the Expo and saw some really cool stuff. After mentioning how he’d love to have one of the things he saw, he quickly acknowledged that the price tag was beyond his means. First, it seems like “stuff” for people with disabilities is just so darn expensive. As soon as something is described as helping people with disabilities, the price tag goes up considerably. For people that are handy and creative, they often build or rig something up for themselves that works just as good if not better than a product they could buy. This happens way too often, and it upsets me. I don’t know the business of manufacturing and distribution, but I do know equipment is very expensive and customer service is lacking in many, many companies who provide products to people with disabilities.

For sports and recreation equipment, there are a few resources that are worth checking out for individuals who want to buy their own stuff. I know there are requirements and guidelines for applying, but with persistence and some hard work, you might just find funding to help you. Check out the Travis Roy Foundation (www.travisroyfoundation.org), the Kelly Brush Foundation (www.kellybrushfoundation.org), The Challenged Athletes Foundation (www.challengedathletesfoundation.org) and Freedom on Wings of Sport (www.wingsofsport.com). Maybe one of these will fit your needs and you can apply for funding. Also HelpHOPELive, formerly NTAF (www.helphopelive.org) can help you set up a fundraising plan to assist you in your efforts.

While these approaches may be time consuming and tricky to navigate, it might be worthwhile in the long run. Check them out so you can go out there and have some fun. Let me know how it goes. I’ll be waiting to hear from you!

Cynthia

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The more I read and learn about exercise for people with spinal cord injuries, the more I realize it’s really no different than exercise in general. Yes, there are special considerations and complications that one might want to prevent or try to offset, but exercise for everyone is so important!

In this month’s “Life in Action” magazine (one of my favorite publications put out by NSCIA and United Spinal for everything related to disabilities – www.spinalcord.org), there are articles on Diet & Exercise. There are some really helpful pointers and comments on various eating styles/diets, and some good references, too.

The adjoining article talks about a weight loss program with a sidebar on a home exercise setup. All good, useful and helpful info. Check it out!

The other part of my message is that consistency is an important part of the equation. Like so many other aspects of our life, if you are disciplined and stick to a program to reach a goal, it will be easier, quicker and more successful. Find out what helps you stay consistent – forming habits, having a buddy, scheduling and time of day – and stick with a plan!

That’s what we see at Push to Walk with our most successful clients, and that’s what I have seen in my personal life as well. In fact, part of my reason I am writing this today is reinforcing all of this for myself, as well. I need to be more diligent in my own exercise program, and I need to set a new goal or two to accomplish. I know this is what works for me. What works for you?

As a timely and related reminder – check out the Adaptive Sports, Recreation and Living Expo at Helen Hayes Hospital in West Haverstraw, NY – tomorrow, Saturday, April 21 from 11 am to 4 pm. Push to Walk will be there, as well as sports programs, adaptive driving, Canine Companions and more! Exercise can be accomplished through sports and fun activities, too. Matt Castellucio has put together a great line-up. Come check it out and say “hello!”

Enjoy your weekend, and get in some exercise! Cynthia

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Webster’s Dictionary (yes, the actual book; I still use one of those!) defines the word “persist” as “to continue firmly and steadfastly despite obstacles.”

In my experience with everything related to spinal cord injuries for almost 8 years now, it seems like persistence is needed in almost every area of everyday life. Whether it’s related to health care, necessary equipment or activities, it seems to take persistence for anything to happen at all. And for things to happen smoothly – well, that takes extra doses of persistence, for sure!

I myself have needed to advocate for proper medical care for Darren, helped him with his benefits (waivers, Medicaid, Medicare, Social Security, etc), contacted vendors for equipment and assisted him in obtaining his driver’s license. Now, he is doing more of these things on his own, but in the beginning, I did a lot for him. From my point of view, the most difficult areas seemed to be the most important. Why is it SO hard to get a wheelchair? The process is very frustrating, maddening at times, and SOOOO slow. This is what people rely on, every single day. And yet it takes months and months, if not a full year or more, to go through the entire process. Who is in control? Who cares? Persistence pays off (sometimes); but I find myself balancing on a thin tight-rope between being persistent and downright mean to the person who seems to be holding up the process. UGH!

Another area where persistence seems to be key is with driving. The difficulty in scheduling adaptive driving lessons, figuring out the proper equipment that is needed, finding/ordering/buying a suitable vehicle, and then having everything come together so you can actually take the driving test and get your license –  I feel exhausted when our Push to Walk clients just tell me what they go through. If they weren’t persistent, the process would take even longer or they would give up.

But that is the good part of the story – our clients DON’T give up! They persist, they persevere and they accomplish things! They get their new wheelchairs, they start driving, they travel, they do fun things. None of it is easy; none of it is fun. But they all do what is needed so they can reach their goals. They overcome obstacles day in and day out, and accomplish things many people told them they wouldn’t. Our Push to Walk clients personify the word persistence in their daily lifes and I am so proud of them!

If you have a good story of how persistence helped you accomplish something in your life – big or small – let me know!

P.S. For all you locals who live near Push to Walk – come to Chili’s on Route 23 in Riverdale on Thursday, April 19. Chili’s will donate 10% of all sales all day tomorrow to Push to Walk – eat in OR take out! Please be sure to have a coupon with you (we have them at Push to Walk or I can e-mail you one, just let me know) or ask your server. Thanks! Your support is appreciated!

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Happy Monday!

After celebrating my birthday for the whole weekend, it was time to settle down and start eating right again! But, boy, was it fun! Thanks for all the great wishes!

On the news this morning, I heard today was the Boston Marathon. While most of us were happy about the above-normal temperatures, I know the runners and organizers would be very concerned about the heat. After training so hard and so long, I can imagine how disappointed the 4,300 runners who did not participate felt about NOT going to the starting line. I think back one year ago to my marathon training and know I would have been so disappointed, too.

So that got me thinking about the upcoming New Jersey Marathon that Team Push to Walk will be doing on May 6. In spite of the difficulties I faced last year in training and finishing the race, I do miss not training this year. For me, it was as much about the journey of getting ready and being prepared as the race itself. Having that goal just kept me so focused and disciplined. In light of that, I really hope that Mother Nature is kind to all the NJ Marathon participants this year and all the runners and hand cyclists can compete as they have been training to do.

I was very proud of my son, Darren, who completed 14.5 miles on Saturday as part of his training. Last year, he completed the half marathon; this year he’s going for the full 26.2 miles. Go Darren! Here’s his picture at Heino’s, our favorite ski & cycle shop in Pequannock, NJ.

I will be part of the support group this year, and am proud to have that role. We have clients, family members and friends on Team Push to Walk again this year, and they are raising incredible amounts of money! These funds will help clients offset their program fees for workouts, and will allow us to continue to provide cutting-edge exercise to people with spinal cord injuries and paralysis.

If you’d like to support our Team in general or a specific team member, you can do so by clicking here:   https://sna.etapestry.com/fundraiser/PushtoWalk/NJMarathon2012/. Or donations can be mailed to us at 6 North Corporate Drive, Riverdale, NJ 07457.

Come and cheer us on! Hope to see you on May 6 in Long Branch!

Cynthia

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Happy Friday, everyone! Tomorrow is my birthday, so I am especially looking forward to the weekend, as I do LOVE to celebrate my birthday!

This week, I had the pleasure of visiting Cheshire Home in Florham Park, NJ. (www.cheshirehome.org) Through a few mutual board members, I met with Barbara Monahan, their Director of Development and Public Relations. We had a great meeting, sharing information and ideas, and she gave me a great tour of the Home. I also had the opportunity to meet a few staff members and residents while I was there. It was obvious that this a caring, family-centered kind of place!

As much as I know about resources in our area for people with spinal cord inury, I was not familiar with Cheshire Home! I am so glad to have learned of this wonderful place which provides medical care and living arragements while fostering educational and employment placements. The goal is to help residents live independent and productive lives.

Our programs serve an overlapping population and I look forward to working with Cheshire Home when residents are discharged into the community. Perhaps Push to Walk can provide the option of a specialized exercise, health and wellness program for people with SCI where appropriate.

Thank you to the administrators and staff of Cheshire Home who provide such a wonderful environment for poeple to thrive in, and the programs and advocacy efforts to help them achieve maximum independence. Check them out!

Have a good weekend! Cynthia

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