Paralegal Fighting Against His Family's Killer

Imagine slowly, over the course of your life, losing control of your muscles. Imagine going from bicycling 100 miles a week to barely being able to walk, in a matter of years. Imagine watching your mother and siblings suffer similarly and eventually die.

That is Russ Kleve's life. Living with muscular dystrophy, a disease that deteriorates the muscles, he said, is "pure hell." Currently participating in an in-depth stem cell treatment, however, he hopes to somewhat alleviate the debilitating disease's effects.

Kleve, 48, is a 1978 Newberg High School graduate who suffers from Facioscapulohumeral Muscular Dystrophy (FSHD), along with most of his family. His older brother, Scott, died in 1995 of respiratory failure, after his chest muscles became too weak to breath properly. His younger brother, Craig, died March 15 at age 47, due in part to respiratory failure and pneumonia. His mother, Jean, died in 2002 at age 72, from sepsis. Kleve's twin sister, Teresa, also suffers from the disease.

FSHD is hereditary, but usually only affects one family member, Kleve explained. "Our particular strain of FSHD seems to be very aggressive and debilitative."

The Kleves were diagnosed with FSHD in the early 1970s. Scott was in a wheelchair by age 14, Craig by 20 and Teresa in her early 20s. Jean, whose case was less severe, walked until her early 60s.

Russ Kleve, a paralegal who now lives in Tigard, was mostly unaffected by the disease until his late 20s, when his left foot began turning inward ("drop foot"). Previously an avid bicyclist, he was unable to even run by the time he was 30. By 40, he was wearing leg braces and using a cane to walk. In 2006, he fell in his office and broke a knee.

"Today, getting up from a fall is nearly impossible without assistance. Standing from a chair is a challenge and almost painful. I can still walk, but very slowly and with difficulty. Stairs are nearly impossible unless they are low-rising and offer some sort of handrail. My upper body strength has also diminished and raising my hands above my chest is not possible," Kleve explained in an e-mail. "The most common (risks) associated with this form of MD (are) frequent falls, broken bones, cuts and bruises, and pushing yourself beyond your limits."

And the challenges aren't only physical.

"I have seen two of my brothers waste away because of this disease and die from its related complications," Kleve said. "I have lived with the embarrassment and humiliation of falling on my butt in public, often in the rain, and having to ask complete strangers for assistance all the while humbly explaining that I have no strength in my legs to help myself.

"However, if I had never been born with FSHD I would never (have) known what it is to be patient with myself and with others. To understand that everyone has something they must deal with, and to look for the positive rather than the negative. Or, as my mother always used to say when one of us kids had difficulty doing something, `So, find another way.'"

Kleve is looking for his "other way" in China. He traveled to the country March 13 to participate in a five-week stem cell treatment not available in the United States. Each day, Kleve receives one hour of physical therapy, one hour of standing therapy with a device designed to improve posture, 30 minutes of electrical stimulation acupuncture and 40 minutes of an electric muscle contraction therapy. He receives a weekly stem cell transfusion (intravenously and through injections in his arms and legs) and will also receive a bone marrow treatment.

The treatment uses umbilical stem cells, derived from live birth, full-term umbilical cords, instead of the controversial embryonic stem cells typically derived from aborted fetuses.

The treatment is expensive - $32,000 for the program, plus about $8,000 to $13,000 in food, airfare and required caregiving expenses, Kleve said.

Unlike with embryonic stem cells, which he said carry the risk of cancer, the risks of umbilical stem cell treatment are "practically nonexistent." The only risks he knows of are blood-borne diseases, but he said he has not learned of any at Beike Biotech, the company he is being treated by. Common side effects of the treatment itself are headaches, nausea and fever, but Kleve said he has hardly experienced them.

And the possible benefits of the treatment outweigh those.

"I hope my treatment will slow down or stop the progression of my disease," Kleve said. "Some added strength would be a bonus. I also hope to educate as many people as possible about FSHD and stem cell treatment, generally."

To achieve that last, Kleve is keeping a blog on his experience, available at russkleve.blogspot.com.

Source: The Newberg Graphic

Comments

[Peggy Davis]

Thank you for sharing Russ Kleve life story of living with muscular dystrophy. I wish him the best of luck with his treatment and hope it improves his condition.