By Sue Scheible
The Patriot Ledger
'My name is Edna Potts and my 36-year-old daughter had a massive stroke in January of 2006, six days after giving birth. It affected her right side, including her speech, walking and her arm," Potts, who is 59 and lives in Plantsville, Conn., wrote in an e-mail.
"She would like to know if any more studies are being done on the robotic arm brace that she may participate in. She is desperate to get her arm back. Out of the whole ordeal, the loss of use of her arm is the most upsetting thing for her.
"I am desperate to get her into the program you wrote about. She is so young to have this happen to her. PLEASE!!!"
Potts saw an article in The Patriot Ledger about a new robotic arm brace that was clinically tested on five people at Braintree Rehabilitation Hospital and was approved in July by the federal Food and Drug Administration. In the short-term trials, the Myomo arm brace showed promise for improving arm strength years after a stroke.
Potts' daughter, Rene Hall, was a middle-school teacher with one child, now 11, when she gave birth to her son, now 19 months. Right after the birth, everything seemed fine, and then six days later, Hall had a major stroke. Her high blood pressure during pregnancy was a possible cause.
I contacted Theresa Hayes at Braintree Rehabilitation Hospital about the e-mail and she called Potts to tell her the hospital plans to make the Myomo arm brace available for more outpatients in the fall. Hayes put Hall on the list of interested patients. The hospital has received a dozen calls from others in New England and South Carolina. For more information, call Hayes at 781-348-2500, Ext. 2107.
Maureen Liberty at Myomo Inc., can also help. Myomo is the company that created the robotic arm and it will soon be working with other rehabilitation centers in other states. Call 617-996-9058 and press 1. Myomo may have a hospital closer to Hartford where Hall lives.
Potts and her daughter show what great hopes are stirred up by news reports of new scientific developments. For over more than a year, Potts has searched the news media and the Web for anything that might help her daughter. Several months ago, she saw a network TV report of a new neurological implant, but when she called Dr. Philip Kennedy at Neuro Signals in Atlanta, she learned that her daughter wouldn't be a good candidate due to because of her type of stroke.
"A stroke changes your life totally," Potts said in an interview. She and her husband, David, live next door to Hall, her husband, Teon,cq and their two children. Potts has a full-time office job and also helps with the child carecq -- two words.
"You don't realize how devastating a stroke is -- my daughter can drive, but she can't use her right arm and she can't really talk. She is too young to be left like this for the rest of her life. We are grasping at anything. Compared to a year ago, she can talk better and we are so excited by any possibility for help for her. We follow everything." Potts' e-mail is epotts2@cox.net.ok to run
LOST STORIES -- Ralph Fergason,cq 59, of Weymouth has a new hobby taping oral histories of interesting South Shore elders. Fergason is an audio/visual/lighting technician at the Boston Marriott Copley Place in Boston.
The project started when a longtime member of The First Church in Weymouth died and Fergason audio-taped the funeral. "He was just a very quiet but interesting gentle giant and I wanted some record of his life," Fergason said. The man's widow later told him she didn't remember anything from the funeral because she was so grief-stricken. She and as well as other out-of-state family members who couldn't attend the services were very grateful to have the audio tapes to listen to, he said.
Since then, he has gone to the Colonial Adult Day Health Center in Weymouth and interviewed four aged veterans on tape. One worked years ago as a rigger for the USS Constitution and literally "knew all the ropes."
Fergason doesn't want elders' stories to be lost to posterity. "When that person dies, their story goes with them," he said. You can e-mail him at ralphfergason@yahoo.com.
CAREGIVER PAY -- A South Shore man in his 50s who takes care of his elderly mother wants to find out if he can qualify as a paid family caregiver under new state programs.
The state's enhanced adult family care program is a MassHealth program that has income and asset limits. It pays certain family members for caregiving of a person 60 or older. Spouses and legal guardians cannot be paid, but adult children can qualify. The family caregivers get $49.05 a day for personal care -- about $18,000 a year to provide care that prevents or delays institutional care.
The Caring Homes program under the Office of Elder Affairs, is not MassHealth and has higher income limits. Spouses and legal guardians are not eligible as caregivers; adult children are. There is a waiting list.
For more information on either, call Christina Gardiner at Old Colony Elderly Services in Brockton at 508-584-1561, Ext. 230. MassHealth Customer Service is 800-841-2900 or TTY 800-497-4648. For Caring Homes info, call 866-797-4222.
NEEDS HELP WITH DRUG -- A Halifax woman is frustrated because her Medicare Part D prescription drug plan won't pay for an expensive new medication, Procrit, that her doctor has prescribed for her kidney disease. She is working with Peggy McDonough and Cathy Varnum at the state's SHINE insurance program at HESSCO Elder Services in Sharon. McDonough said many seniors and younger disabled people are finding certain drugs won't be covered under the Medicare D insurance plans they joined. "One man found his copayment for a cancer medication would be $1,500 a month, until he spent $3,850 out of his own pocket," she said. Seniors can appeal an insurer's refusal to pay for a drug. SHINE counselors will call the insurer or the drug company to see if either provide the medicine at less cost. McDonough also refers people to Greater Boston Elderly Legal Services in Boston for legal appeals. To contact SHINE, call 800-243-4636 and press 2. To contact Greater Boston Elderly Services, call 800-323-3205.
Reporter Sue Scheible can be reached at 617-786-7044, by mail at The Patriot Ledger, Box 699159, Quincy, MA 02269-9159 or e-mail at sscheible@ledger.com.
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