About Me

  • Gender Female
  • Age 67
  • Relationship Divorced

My Story 0 Appreciate this

I am a 61 year old woman who had a wonderful career as a university administrator until I had to stop working in 1998. Since I was a little girl, 12 years old, I have lived with spine problems and have had 4 major spine surgeries, including a double fusion and from which I have lived in constant pain. When I began to manifest MS symptoms doctors assumed they were from my back problems until it became clear that areas of my body were impacted that couldn't be a result of the spine. In 1996 I was given a brain MRI for the first time and lesions were clearly identified, resulting in a diagnosis of MS. I stopped working in 1998, when it became clear I could no longer fulfill my responsibilities as vice president of the college I then worked at. Since then I have done consulting to non-profit organizations, served on a few Boards of Directors, and have done a lot of writing, both fiction and non-fiction. In 2001-02, I fell several times requiring several surgeries to repair severely broken bones and now have plates in both wrists, a rod in my right leg from knee to ankle, and a total hip replacement. For the last 3 years I was an advocate for the American Pain Association (APF) and with the MS Society/NYC Chapter. APF has closed its doors so I have initiated my own program, The Chronic Pain Awareness Project, which I plan to expand and include disabilities and chronic illnesses, including MS. I am now a member of the Government Relations Committee of the Long Island Chapter of the MS Society. I have been a single mother since my marriage ended in 1975, when my daughter was 2 years old. I am very proud of my daughter, now an attorney who is committed to working on behalf of children and families. She is married and has two little boys, who are why I recently moved from NY to Huntington. I love being able to see them more frequently and that they have an opportunity to get to know their Grandma as a vital, active woman and not just see me as the woman in the wheelchair that visits once in a while. My mobility is quite compromised and I am wheelchair bound. Because of vision problems and occasional seizures I can no longer drive and I believe that loss has had the biggest, most negative impact on my efforts to remain independent. I am Blessed that I have a loving, large family on LI and that I am financially and physically able to live independently, which I am working hard to maintain. I look forward to serving as an advocate on behalf of all people with MS, their friends, family, and care partners, both professional and familial. Specifically, I plan to reach out to media, medical professionals, legislators, others with chronic conditions, health related organizations, and the general public to help everyone understand the impact an illness such as MS and conditions such as chronic pain can have on every aspect of a person's life. There is much to be done and I would like to contribute whatever I can to improve the lives of those who live in pain and with illness.

Interests

Living Well with MS Emotional support, Mobility and accessibility
Getting Involved Walk MS, Advocacy, Volunteering
Research Research news
Hobbies and other interestsI love to read and am an avid writer, although both interests have been affected by my failing vision and fatigue. I have also been a volunteer advocate for the American Pain Foundation. I very much like to spend time with friends and am interested in improving accessibility on Long Island, especially in regards to transportation.

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