The story of Bob Brieff

On December 23, 2009, Bob Brieff and his wife, June Price, will be celebrating their 30th wedding anniversary. The love heard in Bob's voice as he speaks of his bride truly shows the extent of their vows. Around the time of their marriage, Bob began to have muscle weakness. He sought medical attention and was diagnosed with a progressive neuromuscular condition called Charcot-Marie-Tooth Disease (CMT). At least one form of CMT disease is now known to be associated with mitochondrial illness. One of the results of this debilitating neuromuscular condition for Bob was that he had to wear leg braces, but in spite of that he was able to remain physically active. However, as Bob got older, and his leg muscles continued to weaken, walking became increasingly difficult, even with the use of a walker and more extensive leg braces.

For many years, Bob was (and still is) a patient at the Muscular Dystrophy Clinic at Columbia University Medical Center, where he was followed by Dr. Hirano, who suspected that Bob had a mitochondrial disorder. In 2006, after a muscle biopsy, he was diagnosed with mitochondrial myopathy. His muscle weakness was progressively getting worse and his once active lifestyle was fading. Bob had to retire from the career he loved in 2005. He was a Psychologist working at Kingsboro Psychiatric Center in Brooklyn New York, part of the New York State Mental Health System. "I was not ready to retire," says Bob, "it was a very difficult time for me." June retired around the same time to take care of her husband. In Bob's words "June's support brings tears to my eyes." Along with June, Bob has the support of a wonderful family and really good friends. "I have aunts, uncles, nephews and cousins who help out a lot," says Bob. They have recently added home heath care to their support system.

Meditation is something that Bob has found that helps him cope with his disease. He does a lot of reading and research on the subject and is training his mind to help him live more 'in the moment.' "I try not to worry so much about what will happen in the near and distant future, but that is easier said than done," Bob said. Bob does feel that his meditation helps with his energy levels to some extent. Bob has a love for computers and technology and for most of his career at the hospital in Brooklyn he used computer- based instruction, as a method of skills training, to help rehabilitate severely impaired patients. More recently, he put his knowledge to good work with the Adult Advisory Council Team (AACT) and currently serves on the council. He took on the task of questionnaire development and analyzing the results this past spring. He is happy to be involved with AACT and says "I have the feeling of accomplishing something that is helpful to other people." He believes that AACT has enabled the adult mitochondrial community to have a stronger voice within the UMDF. Bob uses his computer skills for fun as well!

About five years ago, he created a game that he calls, 'The Boomer Squeeze' with 50's and 60's music. It is a more elaborate version of the old TV game, 'Name that Tune.' He uses his computer to edit the songs, cuts them down and loads them onto his ipod. "I take my ipod and portable speakers to parties and everyone plays! My friends and family think I should commercialize the game, but I do it for fun." The song that best describes the love and support between Bob and June goes something like this - 'Through the years my love will grow, like a river it will flow.

'Can you 'Name that Tune?' (Answer: 'Devoted to You' by the Everly Brothers)
www.umdf.org - Adult Advisory Council Team (AACT)