In the News -- 09/18/2004
Today is the first installment of a regular feature that I'm going to write that probes news about spinal cord injuries and quadriplegia. There is a lot of news out there, and I intend to dig up the most interesting articles from around the world and let you know about them here. All you need to do is click on the heading of the article described to read all about it. So let's begin!
Getting Wider
News-Medical.net has an article about a spinal cord specialist that raises a flag about obesity among those with spinal cord injuries. Is Curves wheelchair accessible?
A Bike without Wheels
News 8 Austin reports on the Functional Electrical Stimulation bike and how it's helping those with quadriplegia.
Rugby Anyone?
The official
Olympic 2004 web site reports that Quad Rugby is the world's fastest-growing wheelchair sport. Check out the
United States Quad Rugby Association web site as well.
A Medical Breakthrough
Independent Online reports that researchers have identified a protein that prevents damaged nerve cells from regenerating. This news is particularly encouraging for those with new spinal cord injuries.
-----
Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
Workin' and Rollin'
Some statistics for you*:
Current estimates are 250,000 - 400,000 individuals are living with Spinal Cord Injury or Spinal Dysfunction in the United States.
- 82% male, 18% female
- Highest per capita rate of injury occurs between ages 16-30
- Average age at injury - 33.4
- Median age at injury - 26
- Mode (most frequent) age at injury 19
Employment status among persons between 16 and 59 years of age at time of injury:
Employed: 58.8%
Unemployed: 41.2% (includes students, retired, and homemakers)
Employment status among persons 8 years post-injury:
Paraplegic: 34.4%
Quadriplegic: 24.3%
* from http://www.wheelweb.com
People that sustain spinal cord injuries come from all job areas and professions. They are bricklayers, plumbers, engineers, managers, machinists, accountants, pilots, etc. Unfortunately, the paralysis that results from a spinal cord injury prevents most from returning to their previous employment. Before their injuries, these folks were collectively contributing billions of dollars per year to the U. S. economy . If the average age at the time of injury is 33.4 years, that is billions of dollars per year for about 30 years! If you also consider that unemployment due to disability means that these folks receive Social Security Disability income and Medicare or Medicaid benefits, you can see that the effect on the economy is substantial.
Many people consider their occupation as part of their identity; particularly Americans. When one is no longer able to continue in his chosen occupation, he not only loses his income, but also part of his identity; who he is, what he's about, how people relate to him. So, the psychological effects of the injury is compounded by the psychological effect of this unemployment.
This situation is slowly changing. Due in no small part to the
Americans with Disabilities Act as well as changing attitudes, more people with spinal cord injuries are finding employment. Occupations in information technology are hot right now, and these positions are well-suited for people with paralysis since the primary asset used is one's mind. In my case, it is easier for me to find employment because I was a software engineer before I was hurt, so it is easier for me to return to the type of employment I had preinjury. For others, some amount of retraining or reeducation is required.
Joyce Bender, is a woman on a mission. As the CEO and founder of
Bender Consulting Services she has strived to put people with disabilities back to work. Her consulting company specializes in utilizing people with disabilities as consultants in information technology, though her company doesn't employ people with disabilities exclusively. I have been in contact with her for over a year, and it looks like I will be employed through her company very soon. Please take the time to view her bio and her company's web site.
Of course, being employed with a disability usually requires some "reasonable" accommodations. In my case, I use speech recognition for a lot of things (including writing for this blog). There are folks that specialize in assistive technology, and it's important for someone that is injured to talk to someone in this field as soon as possible. In my case, I spoke with Roger Little at HealthSouth Harmarville, and he demonstrated and let me try out several things like my speech recognition software, headsets, and mouse-like devices.
What also helps is the Pennsylvania Office of Vocational Rehabilitation (a.k.a. OVR). OVR's goal is to get folks with disabilities back into the workplace. To that end, they assist in covering the cost of assistive technology, some home remodeling, education, even therapy and counseling. As with any government entity, there is some amount of bureaucracy and delay. Diligence is therefore necessary when trying to get assistance.
I've got an informal meeting with my previous employer (Mellon) next week regarding employment there via Bender Consulting. I'll report how that goes.
People with disabilities need to be willing to do what it takes to be employable. Sometimes that means going back to school, learning a new trade, and simply pounding the pavement. What it takes more than anything is tenacity and persistence. For employers, it takes focusing on what needs to be done in a position and looking for people that fulfill that need whether they walk or don't. There's quite a bit of talent out there..
-----
Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
One Year Down
Today is the one-year anniversary of my coming home after being an inpatient and Harmarville. So what has happened during that year? Well, at least a few things.
I have had outpatient therapy rather than inpatient therapy. What's the difference? I started attending outpatient therapy three days a week. Each day I had one session each of physical therapy, occupational therapy, hand therapy, and pool therapy. While an inpatient, I had two sessions of physical therapy and two sessions of occupational therapy five days a week. I also had hand therapy three days a week, and recreational therapy in the pool once a week. Also, in outpatient therapy, I get bounced around between therapists a lot. That really detracts from the effectiveness of the therapy as far as I'm concerned. I can never count on a given therapist working with me on a given day. That means that there is less continuity; therapists are less attuned to what you need. I can't tell ya how many times the therapist has asked me, "So what have you been working on?" I only attend outpatient therapy twice a week now since I am pursuing employment more.
I obviously have been living at home rather than at Harmarville. That has its obvious pluses but it also has its minuses.
The minuses include the fact that I am relegated to one room in my basement. I can get outside if the weather is nice, but only if I use my motorized chair because I live on a hill. The result is that on days that I don't go to therapy I typically sit in my motorized chair. This means that I'm not getting the exercise that I need. In the winter or even in the summer if it's raining, I'm stuck in the basement.
With that isolation comes a lack of socialization. I've got my family and the attendants that come in to take care of me. I currently am not employed. When I was employed, I was also the music director at church. So over the years, I had foregone doing things with other people and maintaining friendships so that I could spend more time at home. That chicken has come home to roost. I don't mean to whine about it, but that's the fact of the matter.
Another change from a year ago -- I've got computer access! When I'm in "my cave", I've got the TV and the computer. Since having access to the computer I've been able to hone my software development skills (as well as learn new things), work on Web design, create a blog, e-mail, and surf. The computer is how I keep my sanity.
I also had a second spinal surgery back in March. That was a sort of low point. I had to miss a lot of therapy, was in a lot of pain, and it was generally not fun.
So I guess a lot has happened.
You can read about my time as an inpatient at Harmarville as well as my time at home by visiting www.faith4recovery.org.
-----
Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
U.T.I. - Three Words That Make One Shake in His Chair
This post contains information of an adult nature. If you are at all squeamish about information relating to what one does in the bathroom, read no further.
So, what is UTI? Is it an institution of higher learning in Utah? Is it the latest small, fully automatic firearm? Is it the name of another son of Saddam Hussein?
Nope. UTI stands for Urinary Tract Infection. Unfortunately, folks with spinal cord injuries that aren't able to urinate on their own are particularly susceptible to urinary tract infections due to the need to use catheters on a regular basis.
Folks with spinal cord injuries aren't typically able to urinate on their own because they aren't able to open the sphincter muscle or valve that allows urine to flow from the bladder out of the body. Typically, this muscle remains tight and closed. A catheter is inserted into the urethra and pushed through this valve thereby allowing urine to enter the catheter and run out of the body. There are two different types of catheters that are inserted into the body: an intermittent or straight catheter, and a Foley catheter. A straight catheter is simply a clear plastic tube that is rounded on one end. A Foley catheter is a tube that remains in the body extending from the bladder, through the urethra, out of the body and into a plastic bag which is emptied on a regular basis. Anytime a foreign body (catheter) is inserted into the bladder, the risk of infection is significant.
UTI's can cause one to have fever, chills, pain, bleeding, etc. Complications include kidney infection, a very serious situation. Treatment is usually with an antibiotic. Multiple UTI's are associated with an increased risk of bladder cancer.
I "cath" (use straight catheters) about every six hours. When I had Highmark medical insurance, I was provided with 120 catheters a month. Now that I have Healthassurance (Healthamerica), I'm provided with 4 a month. Yes, that really stinks. It means that I have to reuse the catheters. We boil them after every use, but every time a catheter is boiled, it becomes softer and more pliable and therefore less usable. Also, no matter what they say, the catheters are never quite sterile after that. Consequently, I have gotten a UTI six times since my insurance changed eight months ago. Apparently my health insurance provider would rather pay thousands of dollars in emergency room and doctor visits than pay for the catheters which are much less expensive, not to mention the effect it has on my health. Paying for the catheters myself would cost around $200 a month. I already pay over $760 a month for the health insurance. Moral of the story? Healthassurance/Healthamerica sucks. Don't get it if you have a choice.
There is more information about UTI's at the
National Institute of Health.
You know, when I talk with other people in wheelchairs, we all talk about how we'd like to walk again and how that's important, but invariably someone says "Yeah, but it sure would be nice to be able to go to the bathroom normally again." Amen, brother.
-----
Greg Euston is a software engineer, private pilot, Christian, C-5/C6 quadriplegic, and Editor of quadBlog.com.
-- Written exclusively for quadBlog.com.
©2004 quadBlog.com
