Current Issue

Apr. 7, 2010

Vol. 110, No. 11

Alumni Scene

Finding a new purpose

Noel Valero ’82 *86 is raising awareness for a little-known disease

By Katherine Federici Greenwood
Published in the April 7, 2010, issue


Noel Valero ’82 *86 founded and leads a nonprofit organization that raises money for research on dystonia, a neurological movement disorder.
Beverly Schaefer
Noel Valero ’82 *86 founded and leads a nonprofit organization that raises money for research on dystonia, a neurological movement disorder.

When Noel Valero ’82 *86 was diagnosed in 2007 with dystonia — a movement disorder whose symptoms and excruciating pain eventually prevented him from working — he thought his chance to make a difference in the world had passed him by. Doctors told him at the time that he would be completely incapacitated in three to five years and would die shortly after that. Valero despaired, but eventually friends “pulled me out of the pity pool and strengthened my resolve to continue to do something positive with my life,” he says.

Valero turned his sights on using some of the few productive hours he has during the day to reach out to other people who suffer from the illness. In November he formed the American Dystonia Society, or ADS (www.dystoniasociety.org), a nonprofit that aims to raise awareness and funds to advance research, diagnosis, and treatment.  

The organization is completely volunteer-run. Valero takes no salary, and there are no offices. Among the board members are doctors Pamela Schaefer ’82, Stuart Joseph ’82 (recently diagnosed with dystonia), and Christopher Walsh s’82. To date, ADS has raised nearly $10,000 and hopes to raise $10 million to $25 million annually within 10 years.

The third-most-common neurological movement disorder after Parkin­son’s disease and essential tremor, dystonia is caused by abnormal brain activity and results in involuntary muscle spasms and contractions that force the body into repetitive and often twisting movements and awkward postures. Experts aren’t sure what causes the onset of the disease, which can affect one or more areas of the body and result in varying degrees of disability and pain. Valero has multifocal ­dystonia, with spasms and pain primarily in his eyelids, jaw, neck, right arm, and back.  

Dystonia is the least-funded of movement-disorder diseases, says Valero. About 300,000 people in North America have been diagnosed with it, but up to 1 million may not know they have it or have been misdiagnosed, he adds. Diag­no­s­ing the ­disease can be difficult because the symptoms can be mistaken for other disorders.  

A mechanical and aerospace engineer in Princeton Junction, N.J., Valero designed spacecraft and satellites for the U.S. Air Force and then for Lockheed-Martin before starting his own consulting company in 1991.

The symptoms of dystonia came on gradually, and a movement-disorder specialist finally diagnosed dystonia three years ago. “It was a very low point in my life,” Valero says. In addition to the spasms and pain, he has had some short-term memory loss and trouble focusing — side effects of the disease and antispasmodic medication.

Today, with rest and treatment, he manages his pain, and his neurologists believe his prognosis has improved and his condition may have plateaued. But life has been a struggle. Empty nesters, he and his wife, Dawn Valero ’85, who has helped him through his ordeal, had imagined that they would be traveling and skiing, hiking, and biking at this point in their lives. Those dreams have been put to rest. Valero can function well for only a few hours a day a few days a week. Driving a car is painful, and he no longer can take his border collie, Piper, for walks. “To have the simple things taken away from you is very hard,” he says.

One of the most trying aspects of dystonia, he says, is the loneliness. Because it is not well known and many people who suffer from it are homebound, support groups are not plentiful. In addition to raising funds for research, ADS launched in March an international network for patient and family support that provides biweekly virtual meetings via teleconferencing and online chat groups.  

Valero works on ADS issues a few hours a week. He also volunteers at Princeton University by helping to teach engineering design classes one day a week for two hours.  

“After three years [since the diagnosis] it’s still hard to cope, but every day is a good day — some are just better than others,” he says.
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Comments
14 Responses to Finding a new purpose

Beka Serdans Says:

2010-04-06 18:02:20

Kudos to you, Noel! It is good to see someone else in the spotlight bringing awareness to this very misdiagnosed disorder. Beka, RN, MS, NP www.care4dystonia.org

Victoria Jenkins MA,MSW,LCSW Says:

2010-04-07 08:21:05

Noel Valero is providing a wonderful service and much needed awareness to this disorder.

Joanne Schiffman Says:

2010-04-07 09:13:38

Great article Noel! Thanks so much for all your efforts to bring awareness and support to this life shattering disease. I thought my life was over for a period of time--not the case now. I am healing and will continue with my journey of recovery. I'm based in LA and would love to be a voice or a face if you guys should need one. Love and light, Joanne

Beth Parks '88 Says:

2010-04-07 09:20:05

You continue to be an inspiration, Noel.

Rick Coley '85 Says:

2010-04-07 09:28:42

Thanks, Noel! My good friend was diagnosed years ago and has found making connections with others a tremendous morale boost. Your organization is a huge help in that area. Thank you for what you do, good luck in the fundraising efforts and God bless you and Dawn!

Eugene Vienneau Says:

2010-04-07 13:02:01

Hi Noel, It's strange doctors mentioned you would die after a while following dystonia onset! If this were the case, I should have died 39 years ago.;) Dystonia is difficult to live with. It's a painful syndrome, finding treatments or medications which work can prove elusive. However, a doctor who is familiar with the disease should prove helpful. Courage and keep on the excellent work.

Tom Seaman Says:

2010-04-07 13:06:50

Thanks, Noel, for your ongoing courage and for bringing much-needed awareness to this life-altering disease. For those of us with dystonia and for those yet to be diagnosed or who are unaware of this disorder, your efforts are greatly appreciated!

Juanita Dailey Says:

2010-04-09 11:18:15

Noel: Thank you for your courage and the compassion you share with all of us who live with this devastating disorder. God bless!

Noel Valero '82 *86 Says:

2010-04-09 11:21:05

Thanks for the kind words, encouragement, and support. My initial diagnosis was X-Linked Dystonia with Parkinsonism DYT3 Dystonia, AKA Lubag because of he rapid development of the disease, my ethnicity, and my symptoms. This is the most virulent form of dystonia, with the shortest life expectancy after onset. As you can imagine, it was quite shocking to hear. I have beaten it for 3 years now, and they are starting to rethink the initial diagnosis. I continue to live my life as though the diagnosis were correct. But I plan to be around a while. I find it ironic that my verification word is "fear."

Anna Van Fleet Says:

2010-04-21 09:26:24

Noel, what a wonderful job you are doing in educating the public. Passed my 5 years to die 15 years ago. As with you, my life is very limited and lonely since people do not understand. Keep up the good work. Hope you can find comfort and some of your travels come true with your wife soon.

Quirina Kolff Says:

2010-04-26 10:43:21

Noel: I'm happy to tell, since yesterday, I'm helping a woman to get all the information and the right neurologist, who was referred to me by her and my common physician. This means for me that my physician recognizes the disease now because of my history, and he is taking steps to help others without going through a long way of suffering as I, and many of us, had to go through. She is a nurse; the hospital where she works doesn't even know what's wrong with her, and she is so happy to be able talk to someone and hear she is not crazy and not alone. Because of people like you, Noel, the world is becoming more aware, and I want to thank you very much. Wishing you a happy day!

Marjorie ORourke Says:

2010-09-22 09:17:52

Because of the American Dystonia Society community, Noel, you have added so much joy to my life in the house. I have people to talk to and I am lonely, but not as much.

Angela Harshbarger Says:

2010-09-22 09:18:49

I have had dystonia for almost 20 years. I have adult onset generalized dystonia. I am now 57, and sometimes I just wonder what is going to happen next. I was told until recently that I had ms and secondary dystonia. I try to keep my emotions in order. I lost my voice over a year ago. This disease or disorder really is a terrible thing to attack anyone

Karen Hayley Says:

2012-11-05 13:44:13

Noel, you have made a wonderful contribution to the people that are living with dystonia. It is so wonderful to hear other people that have all traveled down the same bumpy, hard, long, road called dystonia, but we have taken so many different paths to get to the same destination. I can not begin to tell you the number of different meds prescribed, and also starting as an essential tremor, then getting the right diagnosis of dystonia, after 10 years of such pain and misery -- it does take a toll on you! Thank you, Noel, for everything you do for us!
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