Articles
Print E-mail

Disease awareness video on sporadic inclusion body myositis (sIBM) featuring the perspectives of patients, their caregivers and an expert clinician. sIBM is a rare and debilitating disease with no treatments. The disease causes gradual and relentless muscle wasting, loss of strength, loss of mobility, inability to swallow, and can lead to death.
Profiles of Strength: Julie & Charlie, Living with sIBM
 
Print E-mail

wwltv.com

Posted on May 22, 2013 at 10:33 PM


Meg Farris / Eyewitness News
Email:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  | Twitter:@megfarriswwl

HOUSTON, Tx. - For nearly three decades, you invited Frank Davis and his wife Mary Clare into your home. Every Tuesday morning, they stood in the WWL studio kitchen whipping up great food in a way that made us all feel like we were part of his family.

Now as Frank deals with a serious illness, he's inviting you into his home to show you the battle he is waging and how his unique spirit is pushing him to fight back.
 
You know him as the man who loves food and fishing and fun. Frank Davis has always said he had the best job. Most people retire just to do all the things did at work.

So why would the man whose feet were firmly planted, in what he calls the gumbo mud of Southeast Louisiana, not only retire, but leave his beloved Sportsman's Paradise for the Lone Star State?

"This takes so much focus and concentration," Davis said, as the physical therapist was trying to help him sit up. "All of the things that you take for granted when there's nothing wrong with you." 

Frank is just trying to sit up in bed; it's something he can not do. A year and a half ago, Frank sensed something was not right. 

"I started having trouble tying my fishing knots. I had trouble chopping my celery and my onions."
 
He thought these little things and his stumbling, falling, his need for fishing captains to help him out of boats, his inability to stir a pot, was a sign of age. Doctors said the numbness and tingling was diabetic neuropathy, damage to the nerves caused by high blood sugar.

But he and Mary Clare, his wife of 45 years, began to see serious changes. Their only daughter, an attorney in the Houston area, told them to move near her so she, her husband and four children could help care for them. But after losing everything in Hurricane Katrina, they finally had their dream home on an acre and a half in Slidell. They didn't want to go. 

"I had storm windows that went up and down by themselves. I had 25 killowatt generator. I was going to be in good shape. But we sold it because of this stupid disease. Let me tell you, there was a certain degree of fear built into that decision," said Davis. 

That decision would be a blessing in disguise. While they were leaving beloved friends and a community that adored him, they met Dr. Aziz Shaibani, director of the Nerve and Muscle Center of Texas. He is a neurologist who specializes in neuromuscular diseases.

"I think his disease is severe and it is serious," said Dr. Shaibani, a clinical associate professor of medicine at Baylor College of Medicine who travels worldwide giving medical lectures.

Dr. Shaibani diagnosed Frank with a rare illness called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. It is an autoimmune disease that can happen at any age. For some unknown reason, Frank's immune system sees his nerves and the insulation around them as foreign invaders, like germs that make you sick. So it attacks and destroys them. Frank's brain is fine, but its signals to the nerves that move his muscles are interrupted. 

"No one knows why the immune system decides to go against it's own tissue. Sometimes an immune reaction is triggered by a virus. Most of the times we do not identify a specific trigger factor because it can be anything from stress, to food, to exposure to environmental agents," explained Dr. Shaibani. 

CIDP is rare, so can often be misdiagnosed. Had it been diagnosed earlier, chances of recovery would have been much better. Instead,  Frank went from a cane one week, to a walker the next, a wheelchair and then now to a hospital bed in his home, all in the past month.  

"Can I get a hamburger? How 'bout a chocolate malt?" he asks the physical therapist after he accomplishes a tough task. 

Frank was acting up, singing  and making everyone laugh during his treatment. His good nature in the face of adversity is one of the reasons his physical therapist, Mandy Hester, still comes to help, volunteering her time now because insurance cut off her treatment, saying progress was too slow. She knows it helps his nerves -- so does Dr. Shaibani, who says Frank's fun-loving character, can also help recovery.

"I'm inspired by the optimism of Frank.  He is very infectious and has optimism and he is amazing in his ability to cope with this disease," Said Dr. Shaibani.

At times even Frank is overwhelmed emotionally. It is Frank Davis' personality and brain trapped in a body that is not working.
 
"Exactly right. And it takes that personally, thank God in Heaven, that I got that happy personality, that I can see something bad and smile about it. Okay, believe me I don't want to smile about it because it bothers me. It's a roller coaster ride. I'm good one day. I'm bad one day. Some days I want, I say, 'Hey, hip hip hooray, I'm going to be fine.' And then 10 o'clock, 11 o'clock at night, I'm laying here in the dark, watching the cars go up and down the street. I just want to throw it all in the air and say, 'To Hell with it.'"

Frank and his doctor are encouraged. He is seeing some small steps forward from treatment. He can lift his left arm some and contract the muscle in the other. A port is in his chest area for regular treatments to suppress his immune system. A blood plasma exchange is eliminating antibodies from his blood. CIDP has taken away 70 pounds of his muscle. Treatment has taken his thick, wavy, salt and pepper Sicilian hair, a side effect he was told would not happen by his medical team, but it did.

"You're lying to me. I'm losing my hair and I'm getting nauseous, okay.  He said, 'Don't worry about it. You're retired from television. You don't need hair anymore.' So now I'm going to look like Mr. Clean," Davis laughs, recalling a conversation in his doctor's office. 

The nerves and their insulation can regenerate. Best case scenario, Dr. Shaibani says, Frank could get 50 to 70 percent of his strength back, but it could take as long as two years for nerves to grow back. He could then possibly stand and use his arms.   

"God bless America! I'll take what I can get, okay, because I sure don't want to live the rest of my life like this," said Davis. 

Worst case scenario, because of all the side effects and health complications from the treatment, such as infections, Frank could take a turn for the worse.

"I would like to get Frank to get back to his favorite activities of fishing and cooking as soon as possible," said Dr. Shaibani. 

Frank and Mary Clare have put their bucket list on hold. Instead of all the travel for which they had saved, they watch the Travel Channel and see their savings drained by medical bills. But for this couple, who never let a day go by with out saying, 'I love you,' their commitment has grown.

"You would be talking to a corpse right here if it wasn't for my Mary Clare, all right," said Davis. 

"We still can communicate as much as we did before and love for each other. It gets stronger and I'm always going to be there for him," chimes back Mary Clare Davis.

"She's going to kill me for this but, I try to say the way you have a marriage survive over these years, whatever happens you say, 'Yes Dear.'  You can't get in any trouble that way, okay," Davis jokes back.  

Frank likes nothing more then when old friends call to talk about fishing, even the tides. It takes his mind back to the people and places he loves. As for technology helping him, his daughter got him a computer app that allows you to dictate your e-mail messages. But Frank is having no part of it.

"It doesn't speak New Orleans and it doesn't speak Cajun. It speaks profanity and porn, okay. That's all it speaks. You, I say (to the computer), 'Send me some sauce piquant,' and it says, 'Send me a sexy babe.' I didn't say nothing about that," laughs Davis. 

Frank has lead an active life, working since he was 14, sometimes three jobs at a time. He's been a musician in a band, an X-ray technician, and even wrestled alligators moving them for a conservation program. But he is also had the heart to conquer bypass surgery, diabetes and kidney cancer in the past. He plans to win again and come back home. That's why deep in the Heart of Texas, you'll find one driveway, only one, that is Naturally N'awlins. 


Taken from WWLTV.com Eyewitness News http://www.wwltv.com/news/Frank-208595061.html 


 
Print E-mail
Shaibani cited  as  Best Doctor in America for 2009-2010
Aziz Shaibani, MD of the Nerve and Muscle center of Texas and Baylor College of Medicine has been elected by Best Doctors as Best Doctor in America for 2009-2010.
Dr. Shaibani is the director of the Nerve and Muscle center of Texas and is a clinical associate Professor of Medicine at BCM.
Best Doctors was founded in 1989 by two Harvard Medical School physicians with the vision of making the best medical expertise available around the world. To deliver on that vision, Best Doctors developed patented InterConsultation process and the proprietary Best Doctors database to identify who are the most respected doctors in each of the specialties of medicine. By harnessing the world-class medical expertise of the physicians in our database, Best Doctors brings the clinical knowledge of experts to the problems of people with serious medical conditions and injuries. There is no other organization that brings to bear the significant medical expertise that we have built into our programs.
For almost 20 years, Best Doctors has helped thousands of people be sure they have the right care. Today Best Doctors is the trusted resource for individuals and physicians to ensure the right diagnosis and the right treatment. The company serves hundreds of employers, insurers and health plans, touching more than 15 million people in 30 countries.

Shaibani cited as Best Doctor in America for 2009-2010

Aziz Shaibani, MD of the Nerve and Muscle center of Texas and Baylor College of Medicine has been elected by Best Doctors as Best Doctor in America for 2009-2010.

Dr. Shaibani is the director of the Nerve and Muscle center of Texas and is a clinical associate Professor of Medicine at BCM.

Best Doctors was founded in 1989 by two Harvard Medical School physicians with the vision of making the best medical expertise available around the world. To deliver on that vision, Best Doctors developed patented InterConsultation process and the proprietary Best Doctors database to identify who are the most respected doctors in each of the specialties of medicine. By harnessing the world-class medical expertise of the physicians in our database, Best Doctors brings the clinical knowledge of experts to the problems of people with serious medical conditions and injuries. There is no other organization that brings to bear the significant medical expertise that we have built into our programs.

For almost 20 years, Best Doctors has helped thousands of people be sure they have the right care. Today Best Doctors is the trusted resource for individuals and physicians to ensure the right diagnosis and the right treatment. The company serves hundreds of employers, insurers and health plans, touching more than 15 million people in 30 countries.

soure: Best Doctors

 
Print E-mail

Diabetes Can Cause Feet, Leg Complications

Friday, 06 Mar 2009, 8:54 PM CST

HOUSTON - Type 2 Diabetes causes many complications -- one of them is a condition called neuropathy.

It causes numbness, tingling, and pain in the lower legs and feet. A local researcher tells us every 30 seconds someone around the world gets their leg amputated, mostly from diabetic neuropathy.

We followed several patients in Houston, who are seeking help through injections in the muscles in their legs.

It's a Phase 2 Clinical Trial, so it's a drug that's not yet available the public. Phase 3 is the next phase, then the FDA must approve it. This process will take years to complete.

Both of the patients we followed say the injections have made a remarkable difference in their legs. Both women have better sensation to their feet and legs and one of them can go shopping for the first time in years. Before, it was just too painful. The condition used to keep both of them up at night and they'd dream their feet were on fire.

Dr. Aziz Shaibani is the Director of the Nerve and Muscle Center of Texas and also an Assistant Professor with Baylor College of Medicine. He has been studying this treatment for 12 years. He is still looking for more volunteers, who have severe neuropathy.

myfox_logo

 


mp3 dinle sarki dinle muzik dinle