http://www.spinalcordinjury-paralysis.org/discussions/life en-us http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/23/new-jersey--parking-permits http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/23/new-jersey--parking-permits The Associated Press article on NJ.com
5/22/2013
http://www.nj.com/news/index.ssf/2013/05/disabled_in_nj_will_have_to_ge.html
]]> Thu, 23 May 2013 13:47:24 GMT kathy http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/21/looking-for-an-architect-in-brooklyn-ny-area-who-k http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/21/looking-for-an-architect-in-brooklyn-ny-area-who-k I am trying to find a good, honest architect and contractor, who knows how to build or renovate house with minimal wheelchair barriers.  
If you know someone, please help.  ]]> Tue, 21 May 2013 17:26:24 GMT Maxysmom http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/20/2-door-car http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/20/2-door-car
So what I am asking for is suggestions of what car would fit the bill allowing for me to roll my sling seat Quickie in the back seat without total dismantling it i.e. removing wheels and foot boards. Can do the foot board removal but the wheels not as need them to roll into the back seat as I cannot stand to do lifting.

A van would be nice but gas prices and ramps and dropped floors are not cost friendly and since travels are local I am just looking for maintenance free transportation. We live in the country and in a small town so public transportation is not available and I still want and need my independence. So any suggestions would be welcomed.]]> Mon, 20 May 2013 14:07:49 GMT Thomas http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/16/adaptive-jeans---looking-for-input-on-a-new-line http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/16/adaptive-jeans---looking-for-input-on-a-new-line Thu, 16 May 2013 21:24:46 GMT Stephanie90064-2008 http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/15/an-inspiring-story-of-life-love--family---follow-n http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/15/an-inspiring-story-of-life-love--family---follow-n Wed, 15 May 2013 21:28:13 GMT Diane http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/14/do-it-yourself---adaptive-technology http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/14/do-it-yourself---adaptive-technology
The benefit for those of us in the disabled community has the potential, in my opinion, to change the way adaptive products are designed, made and utilized. If you have the need for a specialized piece of adaptive equipment and it is designed in 3-D, it can be manufactured “relatively” inexpensively depending on the material used. Once the image is made available anyone who has access to that image can have it manufactured. It is even possible to make slight changes in the design and then have the piece produced.

Designing in 3-D is difficult if one lacks the training. However, there are a number of free software programs to let one get started. There are also websites that can take a drawing of an object and convert it to 3-D, so the drawing does not necessarily have to be made by the individual needing it.

Handihelp would like to become a source for 3-D drawings of commonly used adaptive devices such as a wheelchair bracket, hunting and fishing equipment and other pieces of useful adaptive equipment. 3D images could be placed on the website and a person would be able to download the image and have it manufactured online “inexpensively.” The price obviously would vary depending on the material used in the manufacturing process. Handihelp would also like to encourage other individuals with disabilities who have designed adaptive equipment in 3-D to place those images on our website where they would be available, at no cost, to anyone who could benefit from them. Handicap is also learning to design 3-D so one day it may be possible for you to submit your ideas to us and then we would be able to design 3-D image. With this idea in mind Handihelp has established DIY- AT.Handihelp.
]]> Tue, 14 May 2013 17:50:42 GMT Rich http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/10/putting-support-in-the-right-places http://www.spinalcordinjury-paralysis.org/discussions/life/2013/05/10/putting-support-in-the-right-places Sat, 11 May 2013 03:29:28 GMT Michael http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/24/cabin-fever http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/24/cabin-fever
Most of us confined to a wheelchair experience this phenomenon more often than we like throughout any normal year. If you are a quadriplegic, as I am, the impact of cabin fever is ever present. Even when we can get out that in itself can be dangerous and the situation can be compounded by precipitation and changing temperatures. Quadriplegics’ bodies are unable to regulate the body temperature so not only is the cold a confining time but so is the hot weather.  Not only does our body temperature rise and fall placing us in danger of Autonomic Dyslexia, an immediate life threatening emergency, but we don’t realize it when it is happening. The result of these conditions is being “trapped in doors” far more often than most people would imagine.

Combating this occurrence while sounding simple is more difficult than one would think. Wikipedia recommends: “One therapy for cabin fever may be as simple as getting out and interacting with nature. Research has proven that even brief interactions with nature can promote improved cognitive functioning and overall well-being.”

Prior to my accident I was extremely active. Spring, summer and fall I was usually outside biking, running, kayaking, gardening, hiking or hunting. Winters were spent cross-country and downhill skiing, snowshoeing and the like. I knew my adjustment to being a quadriplegic was going to be extremely difficult, having to adjust not only to the limiting nature of the wheelchair but also prolonged periods of time indoors. Living in northern New York and wanting to spend as much time as possible outdoors was going to cause quite a dilemma for me. My desire to get out does not mean going to the mall or spending a lot of time with groups of people. At the beginning, additional restrictions were placed on me by the limitations of my "standard" power wheelchair which made off-road travel close to impossible. This problem was solved in early 2002 when I purchased my Extreme 4 x 4, which is a four-wheel-drive wheelchair and allows greater access to a variety of areas which are off-road including winter travel as long as the snow isn't too deep.

Over the last 14 years I tried to spend my indoor confinement in a productive manner. Much of that time I'm on the computer, my wife calls me a "mouse potato" and she is right. During this time, I have developed my website Handihelp.net, my blog and also continue to contribute to the forums I have on several other websites specializing in information for the disabled community. I also work on my homemade adaptations and applications I hope will help others.

The winter and spring of 2013 have been exceptionally confining. Heavy snow, cold temperatures and spring rains greatly restricted my ability to get outside. Going to the movies, sports events and eating out, while enjoyable, don't satisfy my inner needs. Yesterday April 22 was the first time I have been able to travel off road since early December. While over on my neighbor’s land I heard a turkey gobbling several times, saw three other ones and felt the heat of the sun on my body. My bond with nature was being renewed.
]]> Wed, 24 Apr 2013 17:27:02 GMT Rich http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/12/survey-about-barriers-to-accessibility http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/12/survey-about-barriers-to-accessibility Fri, 12 Apr 2013 21:22:33 GMT Art http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/12/they-will-surf-again http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/12/they-will-surf-again
My name is Richard Fabend (C6 complete) I have a forum on Christopher Reeve’s website and my own website www.handihelp.net I want people to understand about Shore Break. I was struck by a wave while on vacation on the island of St. John in the US Virgin Islands. I had been body surfing for several hours but at the time of my injury I was just standing in waist deep water. I was driven to the bottom breaking four vertebrae in my neck. Unknown to most people there is a condition that exists on many islands, especially in Hawaii, called Shore Break. This hazard is created by the configuration of the ocean bottom leading up to the beach. When conditions are right, such as wind direction and wave speed etc. waves can break very close to the shore and in a vertical (straight up and straight down) direction. Anyone caught in that type of wave risks the possibility of serious injury. The beach where I was is called Cinnamon Bay and two years after I was hurt another individual broke his back and is a paraplegic. This condition exists on many of the island beaches in Hawaii and a law in Hawaii requires warning signage be posted on all beaches where Shore Break exists. One of the dangerous things about Shore Break is that it is undetectable by the untrained eye. There are several beaches in the Virgin Islands where no signage warnings exist. If you are going to surf make sure you research your beach before you go.

Below is a picture of Hawaii’s Shore Break warning.

]]> Fri, 12 Apr 2013 20:46:22 GMT Rich http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/09/got-drugs-national-prescription-drug-take-back-day http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/09/got-drugs-national-prescription-drug-take-back-day U.S. Department of Justice, Drug Enforcement Administration(DEA)

National Prescription Drug Take Back Day
Saturday, April 27, 2013
http://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html

Check with your municipal and county police departments about year round prescription drug collections.
]]> Tue, 09 Apr 2013 15:08:30 GMT kathy http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/02/abdominal-neuropthic-pain http://www.spinalcordinjury-paralysis.org/discussions/life/2013/04/02/abdominal-neuropthic-pain Wed, 03 Apr 2013 02:01:25 GMT walid http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/28/i-hate-it http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/28/i-hate-it
Every time I see the "Suzy" anti-smoking ad, those words come out of my mouth. And every time I say that my wife says to me, “You shouldn't hate it, you should dislike it”. But really I hate it! The more I see it, the more I get offended. If the TV remote is close enough I'll push the mute button so I don't have to hear it.

During my rehabilitation, when I realized we were going to have to have someone come into our house every morning to do my morning hygiene and dress me I was mortified. Over my first 55 years I had become a very private person and carefully controlled the parts of myself I revealed to others. Now someone was going to be injected into my life, invading the most private parts of me. Embarrassment and humility are among the earliest casualties when a person is disabled by quadriplegia. We are so fortunate to have two wonderful nurses and a third available when necessary. My primary nurse, Rhonda, has been with us over 13 years, and she and her children have become part of our family. JoAnn, our weekend nurse, has been working for us about six years, and she too has become an important member of our family. They are both able to walk the very fine line that separates professional intimacy from demeaning embarrassment. My morning routine is the same every day, but somehow mentally, I have adjusted to the invasion of my privacy.

The "Suzy" ad verbalizes the most degrading aspects of this type of dependency which is probably much different for a man than a woman. It shines a light for everyone to see the most humiliating aspect of being so dependent. "Suzy" arrived at her condition as a result of conscious choices she made. When I was in my early 20s my wife and I both stopped smoking when the dangerous aspects of the habit were revealed. On the other hand, at the age of 55, I was struck by an ocean wave while standing in waist deep water with over 100 other people resulting in my quadriplegia. The Christopher and Dana Reeve Foundation estimate there are over 1,275,000 people with spinal cord injury in the United States with the numbers growing daily. Add to this countless victims of stroke and other causes resulting in paralysis. Why should this ad offend and expose those people to embarrassment, humiliation and sadness by reinforcing their own dependency. At the end of the ad "Suzy" does not even express regret for her decision to smoke or the circumstances she finds herself in, but rather tells people "My tip to you is to enjoy your independence now". Is this the message intended by the Center for Disease Control and the creators of such an advertisement?

One would think the CDC, which is run by the government, could find a less offensive way to discourage smoking and spend taxpayers' money. It seems the purpose of the message should encourage viewers to give up the habit of smoking or not to start, rather than to “enjoy your independence now.” I would certainly hope so.
]]> Thu, 28 Mar 2013 16:04:07 GMT Rich http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/21/reexamining-risk http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/21/reexamining-risk
RISK
Author Unknown

To laugh is to risk appearing the fool.
To weep is to risk appearing sentimental.
To reach for another is to risk involvement.
To expose your ideas, your dreams,
before a crowd is to risk their loss.
To love is to risk not being loved in return.
To live is to risk dying.
To believe is to risk despair.
To try is to risk failure.
But risks must be taken, because the
greatest hazard in life is to risk nothing.
The people who risk nothing, do nothing,
have nothing, are nothing.
They may avoid suffering and sorrow,
but they cannot learn, feel, change,
grow, love, live.
Chained by their attitudes they are slaves;
they have forfeited their freedom.
Only a person who risks is free.

~ from page 147 of the book "Addiction by Prescription"  by Joan Gadsby

Most members of the disability community are much more aware of the role risk plays in an individual's daily life. Many of us have become disabled as a result of the unforeseen consequences of risk; not the risk of skydiving, swimming with sharks, or making a mad dash to beat a train across the railroad crossing, but rather by being negatively impacted by risk in our daily lives.

As a result of this acute awareness of the ever presence of risk and its consequences in our lives, many of us, I believe, try to limit the amount of risk to which we expose ourselves. Risk is more obvious for an individual on crutches, in a wheelchair, with impaired vision, and the like, which leads to the question of how then do we enjoy ourselves and at the same time limit the amount of risk in our new lives. Do we allow the possibility of risk’s negative consequences to dictate what we do and how we enjoy the life we now have? I once saw a movie about professional surfers who wanted to ride the ultimate wave. One famous surfer from Hawaii said, "To enjoy the ultimate thrill we must be willing to pay the ultimate price." Now I am not trying to encourage risk to that extreme, but rather to avoid letting the threat of risk take living to the fullest away from us.

This past weekend my friend Andy, from Utah, reminded me of enjoying life in spite of its risks. While driving his adapted all-terrain vehicle on sand dunes near his home, he was going sideways on a dune, lost momentum, and ended up rolling the ATV part way down the hill. Fortunately, he was strapped in, remaining in the vehicle while it was rolling, and he was unhurt. A friend who was with him was able to get some nearby help, and they were able to right his vehicle. In a recent email, Andy explained his ambivalence about what had happened. Several years ago I found myself in a very similar situation when I flipped over in my kayak. Since I was also strapped in, it was only do to the quick intervention of a couple of my friends that prevented me from drowning. I, too, did a lot of soul-searching as a result of this incident.

As we try to adjust to this new life our disability has thrust upon us, the challenge is how do we balance risk? What immediately comes to my mind is the Christopher Reeve quote:

"I refuse to allow a disability to determine how I will live my life. I don't mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery."

For individuals who have been physically active in their pre-disability life, the thought of eliminating the activities which provided them with quality of life can only compound the restricting nature of their new circumstances. Risk is a part of life and is no doubt heightened by our disability, but as the poem might be edited to include, only a person who takes “sensible risks” is truly free.
]]> Thu, 21 Mar 2013 22:36:05 GMT Rich http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/17/research-about-adjusting-to-traumatic-spinal-cord- http://www.spinalcordinjury-paralysis.org/discussions/life/2013/03/17/research-about-adjusting-to-traumatic-spinal-cord- My name is Keely Detweiler and I am a doctoral student from Walden University.  I am currently working on my dissertation for my Counseling Psychology degree.  My research topic is looking at the factors of adjustment for individuals who have suffered a traumatic spinal cord injury during adolescence.  I am particularly interested in this research due to my own spinal cord injury when I was in my early teens due to a diving accident which resulted in an incomplete C4/C5 injury.  Would you or someone you know be interested in participating in my study?  The requirements include either an adult who was injured between the ages of 12-20 or the parent of an adolescent who is at least 1 year post-injury.  I am offering a $20 gift card for the completion as a participant in the study.  It requires 30 minutes/ week for 3 weeks and the completion of 2 journal prompts.  I have a flyer with all of the information if you are able to help. Please respond or message me if you are interested in participating in my study.  Thank you, I appreciate any help you can provide.

Sincerely,
Keely Detweiler]]> Mon, 18 Mar 2013 03:12:20 GMT Keely