07/2010 Newsletter

Quarterly Newsletter

July, 2010 Newsletter of The Joseph Groh Foundation

News Bytes

Osteoporosis and Spinal Cord Injury

Osteoporosis is not just a concern for aging, able-bodied people. It is of special concern to those with spinal cord injuries, and this article provides additional insight into the link between SCI and this bone deteriorating condition.

What exactly is osteoporosis? It is a condition in which bone mass (or bone mineral density) decreases. The term "osteo" means bone and "porosis" means spongy, which is just how osteoporotic bone looks on the inside. While normal bone has small holes in it, osteoporotic bone has much larger holes. These holes make it much easier for bones to break. Osteoporosis occurs in almost everyone during the aging process. In people without disabilities it is much more common in women, especially in those who have already been through menopause.

Osteoporosis occurs throughout the body and the result is that bones may break very easily or even for almost no reason at all - during range of motion (such as stretching), after a minor fall, or even after a bad spasm. The good news is….just because you have osteoporosis, it doesn't mean you'll have a broken bone. According to the National Research and Training Center for Spinal Cord Injuries, only about 6% of people with SCI have brittle bone-related fractures. That may seem like a lot, but statistically the odds are still in your favor.

Immediately after spinal cord injury, they report that bone resorption, or breakdown, begins to occur within days. Another unique finding after SCI is that within days of injury the body starts dumping minerals such as calcium into the urine. This calcium was originally in the bone and was resorbed, or lost into the blood and then leaves the body in the urine. Although this bone loss cannot be seen on x-rays for months, we know it's occurring because calcium and other chemicals released during bone breakdown occurring in blood and urine shortly after injury can be measured. This bone loss is greatest in the first 3-12 months after injury, but still persists for several years after your injury.

It is not known exactly what causes your bones to break down so much after SCI, but there likely are several causes. One factor is activity. We do know that when you exercise, muscle pulls on bone and this actually helps bone become stronger. After a spinal cord injury, some of your muscles are no longer able to function properly due to the paralysis, and therefore, are not able to pull on the bone to keep it strong. Because this bone loss occurs so rapidly after SCI there likely is something else about the SCI itself, such as a change in the autonomic nervous system and/or circulatory system, that makes osteoporosis worse.

When the study looked at the bone mass of people with spinal cord injury, they actually saw that bone loss is greatest in areas that are paralyzed. For example, if you have paraplegia and use a wheelchair, you likely have had bone loss in your legs but not your arms. The muscles in your arms are still functioning and pull on the bones to keep them strong when you perform many activities, such as pushing your wheelchair and transferring. Even the bones in your spine are kept strong because to maintain your posture, some or all of the muscles in your back are pulling on those bones. If you have tetraplegia (you may be more familiar with the term 'quadriplegia'), you have likely lost bone mass in your legs, arms shoulder and and spine as well.

In short, if you have a SCI, you have osteoporosis. In the time period shortly after your spinal cord has been injured, your body is rapidly dumping the calcium from your bones into your blood and urine. This is when osteoporosis can be diagnosed through blood work and urinalysis. Later, and for the remainder of your life you will need higher tech x-rays such as DEXA or CAT scan to diagnose osteoporosis.

Thus far, effective treatments to restore bone mass that has been lost after spinal cord injury haven't been found. The general consensus is that you can't bring lost minerals back into bones. The best advice is to do everything you can in your power to prevent further bone loss. Tips for accomplishing this includes stopping smoking, limiting alcohol and caffeine intake, continuing with physical and occupational therapy, eating a proper diet and getting out into the sun without getting sunburned. Vitamin D is made in the skin while you are in the sun.

Remember that although osteoporosis in SCI patients is a fact, most people with SCI are not breaking bones. Thousands have made it to ripe old ages without breaking anything. The odds are in your favor and there are many ways to reduce your risk.

Thanks to the National Institute on Disability and Rehabilitation Research for this article.

Causes of Paralysis

Spinal cord injury is not the only cause of paralysis. According to the Christopher and Dana Reeve Foundation, nearly 5.6 million Americans are paralyzed, with the average age of those reported being paralyzed being 52 years. Causality reported as follows.

• 29% caused by stroke
• 23% caused by spinal cord injury
• 17% caused by multiple sclerosis
• 9% caused by other
• 7% caused by cerebral palsy
• 5% caused by Post polio syndrome
• 4% caused by traumatic brain injury
• 4% caused by neurofibromatosis
• 2% caused by unspecified birth defect

Featured on the Web

Big Changes to the Foundation Website

When you look at the foundation website, you will notice quite a few changes including:

Homepage

• New picture and corresponding cover story
• Video link to discussion about foundation, replacing previous audio link (recorded in April, 2010 at foundation golf outing)
• New array of corporate logos with link back feature, reflecting the latest organization/corporate sponsors
• Link to new Facebook page. Follow this page for links to stories and news articles related to spinal cord injuries, photographs of foundation related events etc.

About Us

• Downloadable adobe acrobat document describing the Joseph Groh Foundation (thanks to Barb Duffy of Duffy Marketing in Kansas City, Missouri)

News Page

• 2nd quarter 2010 newsletter
• Archived news articles and newsletters

Links Page

• 6 links added under the heading of Caregiver Help and Assistance

Golf Page

• Information about the 2011 benefit tournament
• Link to photos from the April, 2010 tournament

Contact Us Page

• Open Forum has been replaced by the Foundation Blog, powered by Blogger (http://www.blogger.com/) A Link to this blog is located on the upper left side of the page.

We invite you to explore all these new features in detail!

Recent Events

2010 Genesco Sports Tournament for the Joseph Groh Foundation

On April 29, 2000 over 60 golfers came out to Trophy Club Country Club in Trophy Club, Texas to support the Joseph Groh Foundation. Participants came from 9 states including Texas, Illinois, Michigan, Georgia, Florida, New Mexico, Nebraska, Minnesota and South Carolina.

In addition to these golfers, 22 corporate and individual sponsors, 16 donors and 12 volunteers were involved in making this fundraiser a success! In all, the event raised over $17,000 (after costs) to help those afflicted with spinal cord injury and other life altering disabilities. To all the golfers, sponsors, donors and volunteers, board members of the Joseph Groh Foundation say Thank You!

While many golfers found the sand, these were unfortunately the only birdies some golfers saw that day!

People You Should Know

Ken Klein wouldn't consider himself Superman. He does, however, share the condition that "Superman" star Christopher Reeve dealt with the final nine years of his life -- a high spinal cord injury that makes him unable to use his arms or legs.

To move his wheelchair, Klein has what is known as a sip and puff control system that directs the chair right or left, forward or back, fast or slow.

"Stuff happens," said Klein, a 71-year-old Iowa City resident. "You always hear about it happening, usually to somebody else." "I've been fortunate since that time; could have been a lot worse," Klein said.

Klein was a school teacher for 35 years, including 30 years at City High, where he taught driver's education. "It was a good 30 years," he said. Before the accident, Klein was an outdoor enthusiast who loved time on his bicycle. He rode his first RAGBRAI in 1974, skipped the year after that, and then didn't miss another for 30 years. Even when he taught summer school, Klein always arranged his schedule to have time for RAGBRAI. He also participated in two cross-country rides -- a 100-day trip that took him coast to coast in 1995 and another from New Orleans to the Canadian border in 2005. There were summers after he retired where he would walk 1,000 miles, bike 2,000 miles and golf 100 times. He walked every morning from their Iowa City home to St. Wenceslaus Church on Davenport Street. People he didn't know, but who recognized his daily presence walking on North Dodge Street, would wave as they passed by, he said.

His life-changing injury happened while he was outdoors, riding his horse on a friend's property out in the country. Sue Klein said she remembers looking across the road and seeing her husband's horse, but no one on it. They found her husband curled up on his side on the ground. "Stuff happens, and it doesn't take long to change people's lives completely," Ken Klein said. Klein, in fact, says he is lucky that it didn't happen to him earlier in life. "I was always pretty stupid. I'd always try anything or think I could do anything," he said. The same day Klein went into the hospital, a man his same age tripped on a curb, causing a similar spinal cord injury result, he said. Sept. 28, 2010, will mark four years since Klein's accident. "I didn't think I'd last half that long," he said. "I think there's always a reason for it," Klein said. "In the scheme of things, this is the way it was supposed to be."

It's hard for Klein to travel now, and he can't enjoy the outdoors like he used to. "I used to love being outdoors, but it was always for a purpose," he said. Just being out of the house "doesn't do it for me," Klein said. Even though he can no longer ride, Klein said he can't quite bring himself to sell his bicycle. "That bike and I spent quite a bit of time together," he said.

Klein and his wife's lives are now filled with his daily medical needs, including waking up every three hours in the night to turn him from prevent bed sores. "Life is good if I can keep my wife healthy enough to take care of me," he said. Klein jokes that he's now "high maintenance" and knows it is hard for his wife because "once she starts working on me, there's not much time for what she wants to do." "He's worth it, though," Sue Klein said. "We're blessed," Ken said. "Yes, we are," his wife replied.

Article courtesy of Iowa City Press-Citizen

Ken Klein and his wife Sue, in their Iowa City home.

A Day in the Life

This feature is a sometimes humorous, sometimes offbeat, and sometimes irreverent look at life as seen through the eyes of a severely disabled person. Management takes no responsibility for these ramblings.

Top 10 Ways to Treat Quadriplegics In a Wheelchair

This feature is a sometimes humorous, sometimes offbeat, and sometimes irreverent look at life as seen through the eyes of a severely disabled person. Management takes no responsibility for these ramblings.

1. Approach the caregiver (who is standing next to the person seated in a wheelchair) slowly, take her hand between your own and in your most sympathetic voice, asked softly "how is he doing?"
2. When a quadriplegic in a wheelchair approaches the door to a building, watch them intently to make sure they don't injure themselves. Do not initiate an attempt to open the door however, as these people want to remain as independent as possible.
3. When you do speak directly to a quadriplegic, do so slowly and clearly, making sure to enunciate your words in order to be certain they understand you.
4. When accompanying the power wheelchair bound person in public, make sure to walk directly in front of them at a slow pace, in order to make sure they don't get lost. It is extra helpful if you stop every 5 to 10 steps and turnaround to make sure they are still with you.
5. While the person is in a wheelchair, feel free to press all of the different buttons on the display unit in order to see what they do. Once you find a sequence that particularly interests you, push those buttons again and again while exclaiming, "That's really cool!"
6. Make sure to continue assisting the individual in the wheelchair after they have thanked you for doing so, because you just know they want your ongoing help but are afraid to ask for what they really need.
7. Be generous with congratulations to people in wheelchairs for remarkable accomplishments such as successfully driving their wheelchair across a parking lot, being able to control their wheelchair in 90° turns, making it up a ramp without driving off the edge of it etc.
8. Pat the head/face of the stranger in a wheelchair after engaging them in conversation. They really like that.
9. Walk up to a stranger in a wheelchair, ask them what happened, then regale them with stories about when you were on crutches or about your aunt/grandmother/other older relative who is also in a wheelchair.
10. When feeding someone in a wheelchair, feel free to add humor to the experience by making airplane noises and moving the spoon around in the air. They think that is funny too.