Yes, it is a very sad, but true story. The real difference is how amazing they are going thru this. They still fight like they've been married forever & they have the most up-beat attitude regardless of their circumstances.
----- Original Message ----- From: "Tim Boozer" <[EMAIL PROTECTED]> To: "RollTideFan-The University of Alabama Athletics Discussion List" <[EMAIL PROTECTED]> Sent: Sunday, July 25, 2004 2:52 PM Subject: RE: [RollTideFan] Book Recommendation (Non) > > > >-----Original Message----- > >From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] > >Behalf Of Pat Smoot > >Sent: Sunday, July 25, 2004 9:11 AM > >To: [EMAIL PROTECTED] > >Subject: [RollTideFan] Book Recommendation (Non) > > > > > >I have a friend that has written a book called "Eyes Open Wide" written by > >Rodney Wallis. He is dying from a rare disease called OPCA & has written > >this book about it. The proceeds will go to his family. If > >interested, you > >can buy this book at authorhouse.com, Amazon & Barnes & Noble. I hope this > >hasn't offended anyone, but I feel compelled to try & help him and his > >family. > > > > > > > A very sad story Pat. I found this article on your friend, if anyone is > interested. > > http://www.postherald.com/me070204.shtml > > A debilitating brain disease has made life for one man ... > an uphill struggle > Photographs by AMY E. VOIGT > Story by NICK BEADLE > BIRMINGHAM POST-HERALD > Amy E. Voigt/Post-Herald > Wallis rests on the ground after losing his balance and falling while mowing > his lawn. What used to take him 25 minutes is now a two-hour job. This is > one task his wife, Dina Wallis, wont watch her husband do. "I'm used to it, > but Id prefer not to be here," she said. > It has become harder during the past year for Rodney Wallis to push his lawn > mower across the yard of his Highland Lakes home. > What once took the 51-year-old retired mechanical contractor 20 minutes now > takes him two hours, he said. > > But no matter how his increasing loss of coordination affects him, or how > much family and neighbors try to discourage him, he said he is not going to > let someone else touch his yard. Or, when it comes to doctors' orders, give > up habits he enjoys. > > "I'm going to live my life and not let my disease live it," he said. > > Wallis has a progressive form of ataxia. The untreatable condition has > caused his brain to undergo Olivopontocerebellar atrophy, or the whittling > away of the structures controlling balance, coordination and motor skills. > > His diagnosis came after years of balance and coordination problems. His > wife, Dina Wallis, 50, a homemaker, said the couple had passed it off as the > result of a broken leg he suffered years ago. > > Amy E. Voigt/Post-Herald > Dina Wallis comforts her husband after he had a bout of coughing in their > back yard while waiting for friends to arrive from Atlanta for a dinner > party. The Wallises have been together almost 32 years. They have two > children and a grandson. "Our relationship is so strong, we kind of just > give strength to one another," Dina Wallis said. "Dina is the strongest > woman that I have ever known in my life," Rodney Wallis said.. > But while driving back from Atlanta in March 2003, Rodney's arms locked > involuntarily. After helping him get off the road, Dina Wallis said she > implored him to seek help. > > About two months, a couple of doctors visits and an MRI later, Rodney Wallis > said he got an answer: ataxia had already left his brain resembling that of > a man 75 years old or older. > > Because of confidentiality laws, Dr. Richard Bernstein, an Atlanta > neurologist Rodney Wallis has seen, declined to comment on Rodney's > condition. > > The disease affects roughly 75 out of every 100,000 people, and there has > been an explosion of research of the disease since the early 1990s, even > though research funding remains low, said Dr. Christopher Gomez, medical > director at the University of Minnesota's Bob Allison Ataxia Research > Center. > > "It's slightly more rare than Parkinson's," Gomez said, "but we don't have > Michael J. Fox, Muhammad Ali, Janet Reno, or Pope John Paul." All suffer > from Parkinson's. > > Amy E. Voigt/Post-Herald > The Wallises sit in their back yard and discuss the sale of their house. > They have not received any offers, and they are starting to get worried. > Rodney Wallis wants to make sure his wife will be near family as his > symptoms become worse. "My body says its not long," Rodney Wallis said. He > says he isn't afraid of death, but he worries for his wife. "The only thing > about this is leaving her (Dina), but I'm at peace in my heart and soul," > Wallis says. > He said research funding has also been stifled by the disease's many forms. > There are about three dozen genetic, hereditary forms of ataxia in two > categories, and other forms not caused by genetic problems, Gomez said. > > He said roughly a third of ataxia sufferers have the condition's nongenetic > form, which typically sets in during patients' 40s or 50s. No cause has been > found for the nongenetic forms of the disease, but the conditions and > outcome are the same, he said. > > Rodney Wallis said he was not told how long he had left to live, just that > his remaining time would be rough. If he lives long enough, he said his body > would eventually become an immobile shell for a degrading mind, he said, > citing his own research. > > Three months ago, Wallis said that prophecy began to come true. He now walks > stiffly and awkwardly through his home, using the wall to balance himself as > he walks. Hills and inclines are impossible without a cane, he said. > > His constant spills, mostly from just walking, are recorded by numerous > bruises and scrapes, some of which he said he does not know how he received. > > Amy E. Voigt/Post-Herald > Dina Wallis helps her husband through the parking lot of the UAB Clinic > Inverness on June 21. It had been a bad weekend for Rodney Wallis. His > tremors had gotten much worse and he hadn't been able to sleep in days, > keeping Dina up as well. Even though there is no treatment for his disease, > Rodney Wallis was hoping his doctor could give him something to help the > symptoms. "I want to tell her that the tremors have gotten ... a lot worse," > Rodney Wallis says. Laughter has been the only real medicine for the couple. > "It's like I woke up one ... morning and I had this ... disease," he said. > > Among other symptoms, Wallis has periodic jerking spells, impeded speech and > trouble swallowing. The last symptom has forced him to change his diet and > made taking pills for other symptoms, like insomnia, a chore. > > Treating the symptoms of the disease is all he can do. > > Though he has not been tested for financial reasons, the Wallises said they > believe Rodney has the disease's sporadic form. There is no previous > evidence of the condition in his family's medical history, Dina said. > > While Gomez said Wallis' condition is likely not hereditary, he said not all > forms of the disease that hit at middle age or later are sporadic. Genetic > forms have onset as late as 70, he said, and can appear for the first time > in a family if a person's parents are the right genetic combination. > > Activity, safety and rest are important to prolonged survival with the > disease, no matter what the form, Gomez said. But the longer the affliction, > the more damage that is usually done, he said. > > "You can live a full life just very inconvenienced by coordination," Gomez > said. "(But) what really kills (ataxia sufferers) is when vital brain > functions (like breathing) are impaired." > > While Wallis has stayed active, he has not followed all his doctors' orders, > like not drinking and not smoking. Gomez said this is not wise, particularly > since alcohol also damages the brain. > > But Rodney Wallis said he watched two friends live their last days in misery > after they futilely changed their lifestyles to stymie their cancer. Given > the eventual results of his condition, Wallis said he wants to enjoy the > time he has. > > Amy E. Voigt/Post-Herald > To honor and recognize his friends, Wallis has made an area in his garden > for each of them. "Allie," a small waterfall, is surrounded by impatiens > that Wallis tends to even when his tremors are bad. > Doing so allows him, not his ataxia, to control his life, he said. That > attitude is expressed in his 136-page paperback book, "Eyes Opened Wide," > which he self-published in April. The book retails around $12.95 and is > available for order from Amazon.com and AuthorHouse.com. > > Wallis said the book, a collection of stories and posts from a Internet > message board, came out of reflection on the good things that happened in > his life. > > He said such reflection wards off depression. > > "If my condition causes me to die tomorrow, I would've had a better life > than 99 percent of this world," Wallis said. > > While he has not avoided alcohol and cigarettes, Wallis said he likes to > avoid the word "retired," as he said work gives him self-worth. He fought > off leaving Mallory and Evans Construction until his condition finally made > it difficult to work. He retired in May. > > He said he hopes writing can be a financial outlet, but that is becoming > more difficult. Dina Wallis said it now takes her husband an hour and a half > to write a post on the OPCA support board. > > But since he is going from regularly making roughly $100,000 a year to no > more than $45,000 a year in insurance and Social Security benefits, he said > he would "sell produce if (he) had to." > > The financial change has already had one dramatic effect on the Wallis' > life: they can no longer afford their Highland Lakes home. Selling it is a > complete opposite of their one-time plans, Dina Wallis said. > > Amy E. Voigt/Post-Herald > Rodney Wallis waits outside while a real estate agent shows the home to > other agents. It became obvious to the Wallises that they were going to have > to sell their home. Living on a fixed income made it impossible for them to > make ends meet. They are planning to move to Franklin, Tenn., as soon as > they sell their house so they can be near Dina's family. "I hate leaving > Birmingham," Rodney Wallis said. "As much as I've traveled over the years, I > still feel Birmingham is my home." > "I once told Rodney the only way he'd get me out of this house was with my > ashes in an urn," she said. "You have to eat your words." > > Despite his resistance, the disease has changed the way Wallis' daughter, > Monica Praytor, 30, perceives her father's mortality and her health and that > of her son Nate, 7. She said when she was a child, her father "always just > took everything on." > > "Nothing could ever seem to get my dad," Praytor said. > > The Wallises also have a son, Adam Wallis, 25, who works as a project > engineer at W.B. Wallis, an Atlanta mechanical engineering firm operated by > Rodney's brother. > > As his condition continues to progress, Wallis said, he knows his wife will > need help. "I never thought I'd have a newborn at 50," Dina Wallis joked. > > That is why they are moving to Franklin, Tenn., where they will be close to > her family. > > Rodney Wallis said his wife is in most of his thoughts about his death. > > He said that while he has accepted his death, he has not accepted leaving > the woman he said he has loved since he was 12. > > "And that hurts," Rodney Wallis said with tears in his eyes. > > > Ataxia > Common symptoms of ataxia include: > > Balance, coordination problems > > Slurred speech > > Trouble walking > > For more information on ataxia, visit: > National Ataxia Foundation: www.ataxia.org > > > University of Minnesota Bob Allison Ataxia Research Center: > www.mmf.umn.edu/ataxia/default.htm > > > > > ______________________________________________________ > RollTideFan - The University of Alabama Athletics Discussion List > > "Welcome to RollTideFan! Wear a cup!" > > To join or leave the list or to make changes to your subscription visit http://listinfo.rolltidefan.net ______________________________________________________ RollTideFan - The University of Alabama Athletics Discussion List "Welcome to RollTideFan! Wear a cup!" To join or leave the list or to make changes to your subscription visit http://listinfo.rolltidefan.net
