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Posts Tagged ‘wheelchairs’

Happy Wednesday!

Yay, a day without snow! With record snowfalls in northern NJ this year, everyone I know is looking forward to spring. We all hate the shoveling, clearing our cars, and navigating through parking lots and sidewalks. But if you know  someone who uses a wheelchair or has difficulty walking, what an added element of difficulty snow adds to a daily routine.

As I make my way carefully over slippery surfaces, up and over snowbanks, or around obstacles to get where I’m going, I think about everyone who relies on their wheelchairs for mobility or have difficulty with balance and taking smooth steps. HOW do you do it? From very narrow walkways to uncleared access ramps, snowed-in parking spaces to icy surfaces – it can be a nightmare, I am sure. And how do you clear off your car, or dig out after being plowed in?

Other than moving to a warmer climate, what are your solutions and tips for others who might be facing similar situations? I’d love to hear your ideas, and pass them along to others!

Until the next snowstorm (although I know the snow we already have will cause problems for months), stay safe!

Cynthia

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Happy Friday Everyone!

I am so excited to pass along this link! A video about my son Darren’s story and the reason we founded Push to Walk was recently produced and is featured on CNN.com. Check it out!

CNN Stories Worth Watching: Paralyzed Adventurer Moves Forward

Many thanks to our Board Chairman Ralph Rathyen for initiating contact with Sarah Galus Esteves at CNN and her commitment to bring it through the process for story development. Thank you to Sarah, Holly Firfer and the entire team for bringing our story to the public!

Please share with others through email, Facebook, etc.  Help us spread the word!

Enjoy the weekend! Cynthia

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New Jersey Governor Chris Christie has again designated September 2013 as Spinal Cord Injury Awareness Month. This fits in nicely with the nationally recognized month, and will hopefully serve to educate, inform and advocate for all those people living with spinal cord injuries and paralysis.

One of my personal goals of SCI Awareness Month is to help people in general understand what spinal cord injuries really mean. Here’s a quote that sums it up:

“I don’t like it that media shows only “inspirational” people.  I want people to know what happens when there aren’t any accessible parking places left.  I want them to know about pressure sore issues, catheters, bowel concerns, pain, medications, the average income, assistance needed—the whole dark side.  I don’t want their pity.  I want them educated.  Only then can they understand the need for ADA compliance, rehab availability and medical research.”   —  Karen Miner, C4, Roseville, California

While there does seem to be more media coverage lately about SCI, and that is a good thing, (hopefully we contribute to that as well), there is a need for people to understand what the daily challenges are for a person with SCI. The things the able-bodied population (including me) take for granted every day. With our clients and interactions with family members, we hear what the realities are every single day. With persistence, determination and a will to move forward, people deal with and overcome these daily challenges, but as an outsider, we have no idea…….

The obvious challenges are physical mobility and lack of accessibility in still so many public places. Transportation challenges are high on the list: not being able to drive, affording an accessible vehicle, relying on drivers, even getting a vehicle repaired. All can disrupt a person’s schedule for days, even weeks. Usually the unspoken topic is bowel and bladder issues. When a daily routine of bowel movements is disrupted by any number of causes (diet, medication, anxiety, physical ailments or other unknown assailants) a person’s self confidence, dignity, and emotional well being are attacked along with schedule changes and missing work, school and exercise. When bowel and bladder accidents happen either at home or in public, even those who figure out ways of dealing with it can become frustrated, angry and upset.

Any little thing can trigger a downward spiral. Sometimes a person’s emotional state is so fragile, a “simple” disruption is anything but. I can list many more challenges that none of us really see when we see someone who uses a wheelchair. Please know they exist; just be aware. That’s one thing I hope SCI Awareness Month can help accomplish.

Thanks for reading! Cynthia

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I am an able-bodied person that spends a lot of waking hours around people in wheelchairs. At Push to Walk, most of our clients use wheelchairs for mobility, and while they may not be in their wheelchairs for the duration of their workouts, they come and go and converse with me while in their chairs. As much time as I spend around people in chairs, I do not have a clue what it takes to go through a day, every day, every week, every month, in a chair. While I have been prodded to spend a day in a wheelchair, and I have resisted (more about that in another blog post, I promise), I still don’t think that would help me understand the situation, although it would provide some insight.

In any case, here’s a good example of what those of us who walk around without a thought about the fact that we ARE walking, don’t think about.  And I’m sure there are a thousand other things as well. By the way, this is the father of a Push to Walk client.

Along this line of thought, there is a group called SCI Sucks that spells out what the public doesn’t realize about spinal cord injuries, and the messages often perpetuated by the disabled community itself. Their tagline says it all: “People tell us to change the name, but then we wouldn’t be telling the truth.”

Take a few minutes to think about ways you could improve just little things that could make a world of difference to someone who uses a wheelchair. It might just make someone smile, and make their day just a little easier.

Cynthia

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Happy Wednesday!

We are in the final countdown of days to Christmas, and perhaps some of you are planning to travel around the holidays. Air travel IS possible for people who use wheelchairs, and I would encourage you to not shy away from flying places that you might want to go to. Whether to visit family or friends, take a vacation or even a business trip, some advance planning and preparation are key to a succesful and enjoyable experience.

First, make sure you specify your needs when making your initial plans with the airline.

Second, allow PLENTY of time for all parts of the process: arrive early and allow extra time for going through security and getting to the gate. If you need assistance curbside, let the airline personnel know what you need. Once you’re at the gate, make sure the gate agents know you need an aisle chair or assistance. You’ll probably be the first passenger to board, so be ready!

Third, make sure you take all removable parts of your wheelchair onto the plane with you, and your seating cushion if you will use that on the plane. Make sure your chair is tagged and marked properly for any special care that needs to be taken. This is especially important for power chairs.

Fourth, always allow for delays! Make sure you have extra supplies for cathing and know how you will handle a situation if it arises. Delays are inevitable these days (or so it seems!), so being prepared is essential.

Finally, when you arrive at your destination, check your chair throughly to make sure it is not damaged, all parts are accounted for and it is safe to use. Don’t transfer into it until you are sure it is safe! If it is damaged, take pictures and document what has happened, and file a claim.

Air travel can be troublesome for everyone to some extent, and with added challenges of accessibility, accomodations, wheelchairs and extra supplies needed, you do need to plan accordingly if you have a disability of any sort that requires special attention. There was a story in the news recently about a 12 year old girl who uses a wheelchair being treated unfairly by the TSA. It happens, and it’s awful. My son was, I believe, unfairly targeted when flying out of Denver airport several years ago, and the commotion they caused and the way he was treated probably violated his rights as a person and a passenger. It’s a difficult situation, though, and while you may not deserve the treatment the TSA seems intent on imposing on you, it’s a very helpless feeling to be at their mercy. Try to document anything that seems ufair, and get names and badge numbers for follow-up later on.

I hope you enjoy traveling and go many wonderful places! Using a wheelchair may present additional challenges, but I hope they don’t prevent you from going anywhere you want to go!

A recent edition of Life in Action (Sept-Oct 2012) has some wonderful information on various travel activities and tips. Check it out!   http://www.spinalcord.org/getting-there/

Happy and safe travels! Cynthia

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This weekend, there are two totally unrelated things for me to write about. While they really don’t belong in the same blog, I only have one day to write about them, so here goes!

Happy Hanukkah to all our friends who celebrate the holiday also known as the Festival of Lights starting on December 8 and continuing for eight days. As I understand it, Hanukkah honors the perseverance of Judaism during ancient times, and the story of how the Menorah lamp miraculously remained lit for eight days. May you enjoy time with family and friends during this holiday season!

Also this weekend, the 5th Annual NY Warriors Al Youakim Invitational Wheelchair Rugby Tournament will be held at The Henry Viscardi School, Albertson, NY. Games will be played Saturday December 8th and Sunday December 9th. The daily schedule will be 9-7:00pm on Saturday and 9-3:00 on Sunday. Awards Ceremonies will immediately follow the final game.

If you have not seen or experienced quad rugby and are in or near Long Island, this would be a great time to see the sport. I am very excited to learn that the NY Warriors will have two teams – that is awesome! And one of our own Push to Walk Summer Campers who tried the sport during the camp has joined the team! We are very excited about that! Adaptive sports like quad rugby offer an opportunity for healthy competition, socializing and camraderie. All the players I have met the last several years going and watching the games have been the nicest people (off the court, anyway!), and they really enjoy the sport. Go and check out a game or two!!
Teams that are participating: New York Warriors – 2 Teams, Philadelphia Eagles, Gaylord Sports Association’s Connecticut Jammers  and Northeast Passage Wildcats
The Henry Viscardi School is located at 201 I U Willets Road, Albertson, NY 11507
Saturday:
9:00 – 10:30: New York 1 / Philadelphia
10:30 – 12:00 Wildcats / Connecticut
12:00 – 1:30: New York 2 / Philadelphia
1:30 – 3:00:  Connecticut / New York 1
3:00 – 4:30:  Philadelphia / Wildcats
4:30 – 6:00:  Connecticut / New York 2
Sunday:
9:00 – 10:30: New York 2 / Wildcats
10:30 – 12:00: New York 1 / Wildcats
12:00 – 1:30: Connecticut / Philadelphia
1:30 – 3:00:  New York 1 / New York 2
Maybe I’ll see you there! Enjoy the weekend, whatever you do!
Cynthia

 

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Hello Everyone,

It’s hard to believe that Hurricane Sandy came through 10 days ago, and still the devastation continues (and will continue for a very long time). The scope of the damage and lives lost is unreal – I can’t even begin to imagine what hundreds and thousands of people are going through. I have a hard time just looking at the pictures and videos, so the idea of being directly affected at that level seem too difficult to comprehend. My thoughts and prayers are with everyone affected.

My good friend, Richard Gaskin (also known as Professir X) has brought something to my attention that is definitely worth sharing. In all the coverage by the media of the storm and its aftermath, have any of you seen pictures or read stories about how people with disabilities have been affected by the storm? I know I haven’t. Again, it seems people with disabilities are the “invisible” ones. People that need power to survive – their ventilators, power wheelchairs, electric beds, etc. How about those who need caregivers and those caregivers cannot get to them? Or need supplies and medications? What about people who have been forced out of their accessible homes – where can they go? Has the media paid them any attention at all? Richard doesn’t think so, and because of his ability to capture ideas and present them in captivating ways, he is asking anyone with stories, videos or pictures to contact him. Let him know of your experiences, frustrations or good stories of how you’ve managed after Hurricane Sandy whipped through our region and our lives. You can write to him at professirx@aol.com.

Stay safe and stay strong. Recovery will only be accomplished by working together.

Cynthia

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We are looking forward to the first ever Jack O’Lantern Jamboree which will be held at Kinnelon High School, Kinnelon, NJ on Sunday, October 28, 2012 from 4:30-6:30 pm, rain or shine. This is a FREE family event! Pumpkins are being sold ahead of time, and children and adults are encouraged to bring their pre-carved or painted pumpkins to be judged for prizes. There will also be a live pumpkin carving contest, a carving demonstration, kids’ games, a wheechair obstacle course, and a parade for the kids who come in costume. Many local businesses have donated prizes for the winners. The event will conclude with the Push to Pumpkin Walk at sundown, when the carved pumpkins will be lit around the track for all to admire.

When Suburban Trends approached Push to Walk with the idea of a fun, family event, we were very excited to work with them on a Halloween related theme and have an opportunity to raise awareness of spinal cord injuries at the same time. Since we always look for ways to tie our mission into our events, the idea of including a wheelchair obstacle course seemed like a perfect fit. Members of the public can see what it’s like to navigate a wheelchair for a few minutes, and try to do simple things from a seated position.

The live pumpkin carving contest is hoped to generate interest among the attendees, who will then bid on their favorites to take home with them if they are the high bidder. So bring your carved pumpkins to Kinnelon High School, and join in on the fun! Check out this link for more information:

http://www.facebook.com/events/413920551998168/

Call us for details! 862-200-5848. Hope to see you there!

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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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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