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Archive for September, 2013

It would seem only right that the Push to Walk staff and I spent the last few days of September at the Working 2 Walk Science and Advocacy Symposium in Boston this past weekend.

Marilyn Smith and her entire team at Unite 2 Fight Paralysis (U2FP) hosted an amazing event that brought together researchers, scientists, advocates, related professionals and people with SCI and their families to hear the latest information as related to finding a cure for SCI and how to advocate as a community.

While much of the science was over my head, I am excited and energized about all that is going on in the US and abroad to find a cure for SCI. Admittedly, I am also frustrated at just HOW LONG this stuff takes! But it is exciting to learn about new research and hear updates from those who have presented at previous conferences.

Travis Roy’s opening remarks on the second day of the symposium were open and honest, revealing personal details about his challenges from the moment he opens his eyes in the morning. While mostly familiar to me, I hope his comments opened up some other eyes and brought just a small dose of reality to those working for a cure in their labs and not necessarily knowledgeable about the intricate difficulties a person with SCI faces each and every day.

U2FP does an awesome job of not only pulling together this conference, but also spreading the information afterwards. While some or most might not be available yet, stay tuned to the following links for posted details:

Unite 2 Fight Paralysis

Care Cure Forums for Kate’s incredible live blogging

(I see Care Cure has recently updated their forums, so please be patient if you find any bugs or problems. I know Wise Young and other moderators are working hard on needed fixes. They are scientists and advocates, not IT experts. It might some time to iron out the new system.)

Travis Roy Foundation

Here’s to hoping research continues for SCI and even more people and funds are allocated to work on this area. I am thankful there are dedicated scientists and teams doing a lot of exciting work, and pray every day that a cure will be found………we must ALL work towards this goal, support the research and ADVOCATE for ourselves!

Cynthia

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This particular piece of writing was written a few months ago, when I was having a down day. Fortunately, these days are few and far between, but these feelings are never far from the surface…….

SCI Sucks

I know I am usually a positive person, upbeat and optimistic. But a few days of personal difficulties, and I am down in the dumps. I totally agree with Geoff Kent, who formed “SCI Sucks” with its tagline “People tell us to change the name but then we wouldn’t be telling the truth.” How true. I don’t dwell on this fact for many reasons: I do want to find the positive, I don’t want to live with negativity and depression, and I do want to have impact on others’ lives for the better.

Accordingly, I totally disagree with a recent statement made by a young person with a fairly recent SCI who claimed “the past two years (after my injury) have been the best years of my life.” Really? REALLY? Now, it is possible this person was misquoted, or the words were taken out of context. But that would mean the reporter/writer either made it up, or twisted the words. Possible? I guess so. Probable? I don’t think so.

So I am going to say it again – SCI SUCKS.

Do I love my life, my husband, my family, my friends? Undeniably, YES! Do I love what Push to Walk does and the opportunity it gives me personally and our extraordinary team to do for people? Of course! But unlike some other comments I have read since being involved in the SCI community for almost 9 years now, I WOULD change it if I could. It is NOT the best thing that ever happened to me. It is tough, challenging and upsetting. (And this is just ME, the parent of a young man with an injury. This is not meant to portray how he feels or his outlook, just mine.) Thinking about the what if’s, what was lost, what now – wow, that can be overwhelming. So usually I keep these thoughts suppressed, but there they are, always just beneath the surface ready to rear their ugly presence when my defenses are down.

I get the idea that other people just can’t know what we go through in these situations. Heck, I know I had very little understanding of all this before Darren’s injury. Ignorance is bliss. How I wish I still had that ignorant/innocent outlook. But I know had empathy and compassion, just not the understanding I have now.

So today I write this with a heavy heart. With feelings of sadness, grief and loss. Writing is therapeutic for me, so hopefully after completing this I will go outside, soak up the warmth of the sun, enjoy the warm weather, and take a deep breath. One that will calm my soul, help me realize all the good in my life and in the world around me, and turn my negative feelings into positive actions. If you see me, give me a hug. I could use one today.

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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Push to Walk’s 6th Annual Charity Golf Outing is right around the corner, on Monday, September 23rd at The Knoll West in Parsippany, NJ. If you haven’t registered to play, and still want to, REGISTER NOW at (Golf Outing Registration Sitebecause it’s almost sold out! That is the good news!

But as anyone knows who has been involved with events like this, it takes a lot more to make a successful event. First, we are truly appreciative all of our golfers, many of whom have played year after year, bring new friends into our circle and are generous supporters. Second, our sponsors, also many of whom have supported us every year since the beginning. Like Lakeland Bank, Millennium Technologies, Psion Teklogix (now Psion Motorola Solutions), Bielski & Bielski, and Rentalift (aplogies to any I’ve forgotten). Third, our Golf Committee and Board Members who donate their time, energy and funds to make it all happen.

Even with this help, we still need more! If you have any type of goods, service or gift certificate that can be used as a golf prize, silent auction or live auction item, we are in need!!!

Our Annual Golf Outing is our largest, most important fund raiser of the year for operational expenses.  Client fees of $85/hr only cover 65% of the cost to provide that service. Yes, it costs us $130 to provide every hour of specialized exercise to our clients with spinal cord injuries, brain injuries, MS and other forms of paralysis. If you can help us help those who need our services – and we are the ONLY place in the entire NY/NJ areas to provide this – please give us a call at 862-200-5848!!

Thank you for your support!    Cynthia

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