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TSA of Ohio Newsletter Online!
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Clinical trial - Mirapex
Some of you may have been approached by medical professionals seeking assistance in recruiting subjects for a clinical trial using Mirapex (pramipexole) for treating Tourette Syndrome. This is a large, multisite, nationwide trial that is being sponsored by Boehringer-Ingelheim.

Please note that at this time, TSA has requested, but has not received, the study protocol which needs to be reviewed by our medical advisors so that they can advise us as to whether or not our members should be asked to cooperate. Consequently at this time we are not recommending or encouraging our members to participate in this study. Should this status change, we will advise you of it.

Nelson Freed featured on magazine cover

Nelson Freed

The irrepressible Nelson Freed of Canton, who has excelled in persevering despite his Tourette’s, was featured in a cover story in RSC NewsNet, the magazine of the Rehabilitation Services Commission of Ohio. Not only was Freed on the cover, but his story was the subject of a two-page spread inside the November/December issue of the magazine. The author of the piece, Trudy Sharp, also covered the TSA of Ohio’s state conference in October, which she wrote about in a sidebar with photos. The main story recounted Freed’s struggles and triumphs since he was diagnosed with Tourette’s, most notably his earning a bachelor’s degree in public relations from Kent State University and his eventual landing of his current job as a data entry specialist with Coleman Data Solutions. The Rehabilitation Services Commission was instrumental in helping Freed find employment despite his pronounced motor and verbal tics. The article about Freed concludes on the upbeat note that he typifies in his daily life: “His employer is happy with his performance and officially awarded him for his attendance. ‘Two and a half years later, every single day, I’m ready for work. Everybody knows there’s Nelson, saying, “It’s all good.”’”

I can’t work! (with TS)

Applying for Social Security Disability or Supplemental Security income

(I have been asked to share my thoughts on the legal aspects of dealing with Tourette Syndrome. In this article we will look at how those affected with TS who are disabled from work might qualify for benefits.)

As a guest speaker and panelist for last October’s annual conference of the Tourette Syndrome Association of Ohio held in Columbus, one theme I heard repeatedly was that the effects of TS vary greatly from person to person, both in the case of adults and children.
I also learned that although treatments also vary greatly, most people with TS are fortunately quite functional in their daily lives and are successfully employed. However, as with the general population, some TS cases are not well controlled, especially when combined with other physical and/or mental impairments.
Persons in this latter category may be appropriate candidates for Social Security Disability (SSD) or Supplemental Security Income (SSI) Benefits. SSD benefits apply to persons who have worked and completed a sufficient amount of quarters to qualify. The amount paid is based upon prior earnings. SSI applies to those individuals with insufficient quarters of coverage. The amount of benefits received is a fixed statutory amount that increases yearly. Both programs also provide health care.
If you believe you are a candidate for SSD or SSI Disability Benefits, here are a few tips to keep in mind:
* The ultimate question in all Social Security Disability (SSD) and Supplemental Security Income (SSI) cases is why the claimant cannot work. Both programs are governed by a complicated collection of regulations, rulings and case law decisions.
* An applicant must have physical and mental limitations that affect work functions that are medically determinable. Work is defined as eight hours per day, five days a week. Part-time work or sheltered work is not considered substantial gainful activity (SGA).
* Generally the focus for disability requires having significant functional limitations that are characterized as being markedly impaired limitations (that is, something more than mild or moderate). The focus for evaluating markedly impaired functions is whether the impairment affects age-appropriate cognitive and communications functions, social functions or personal functions, or whether there are difficulties in maintaining concentration, persistence, or pace.
* Common examples of physical work functions are the ability to sit, stand, walk and lift. Common mental (non-exertional) work functions are the ability to concentrate, persist, maintain pace, follow simple one- and two-step instructions, or engage in work with minimal contact with co-workers, supervisors or the general public.
* Chances of success increase with a person’s age starting at age 50. Continuous re-filing is usually less successful than appealing an initial denial at least twice up through the Administrative Law Judge hearing level. Applicants are permitted to be represented through all aspects of the application and appeals process. Fees are generally charged only if the applicant is successful and are a percentage of the back benefits.

Gary J. Pandora is a former assistant attorney general for the state of Ohio. He has been in private practice in Columbus for more than 25 years. His practice involves personal injury, medical malpractice, Social Security and SSI disability claims. He can be reached at mailto:gpandora@chorgood.com.

Share your success stories
Has something good happened in your life, or your child’s life, that you’d like to pass along? Tell all of Ohio about it! Send the story to us, and we’ll write it up and put it in the Tic-ertape and on our website. If you have photos, that would make it even better.

Call TSA Ohio headquarters in Columbus at (800) 543-2675; e-mail admin@tsaohio.org; or e-mail newsletter editor
Bruce Holtgren at bruceholtgren@yahoo.com.