Jeanne Tiberio with Deb, her caregiver of 14 years, accompanied by Betty the cat.

Jeanne Tiberio Claims Her Way to Independence And Reinvention In Her Fight Against Muscular Dystrophy

Jeanne Tiberio was diagnosed with a rare form of Muscular Dystrophy (limb-girdle) in 1982 when she was in her mid-twenties. There was no treatment and no cure.  The only medical advice was that she not become pregnant as it would mean certain death for her and baby.  At that time she was told she most likely had a ten year prognosis, to which Jeanne then determined, “Well, I’m doing twenty years.”

Jeanne Tiberio has always been a fighter so the diagnosis of Muscular Dystrophy (MD) served as a catalyst to reinvent herself, which she has been doing ever since.

She recalls her earliest memories when up to the age of six, she did not speak. She was never diagnosed with Autism but her symptoms were similar.  She would not let anyone (including her mother) touch her.  She would not answer to her name and was thought to be deaf initially.  Jeanne describes her inability to make sense of language.  She would only hear parts of sentences and was unable to communicate through language.  She remembers being in her own world and being different from others her age.  Younger sister Peg was Jeanne’s best friend and their close relationship allowed for Peg to speak on Jeanne’s behalf.

Once Jeanne started first grade, she slowly started speaking and remembers that in the fourth grade she was understanding more.

There were early symptoms of her Muscular Dystrophy. In her teen years she ran flat footed and was criticized and told to try harder.  She compensated for being slower and weaker by participating in many physical activities like cycling, tennis, and hiking.  She simply wanted to be normal.

High school was difficult. Jeanne was bullied and without friends.  She then discovered the benefits of transcendental meditation and began her life-long habit of twice daily meditation.  She credits this with helping her to feel normal.

Jeanne grew up loving to cook, working alongside her mother while growing up in Beverly. At the University of New Hampshire, Jeanne completed her Bachelor of Science in Nutrition Biochemistry followed by her Master’s Degree in Food Science and Nutrition at Cornell University.

Jeanne put her cooking skills to good use during her college years. She would invite friends for a meal she created.  Her desire to fit in and be normal was a strong force and what drove her through her many accomplishments.

Jeanne was working as a food scientist at Lipton’s when her MD started restricting her mobility. It was then she decided to return to school to become a Registered Dietician.  “When I get hit with one thing, I come up with something else I can do.  Maybe if I hadn’t had illness early in life and I hadn’t had to fight to be normal, the diagnosis of MD would have been more devastating.  Hardship is sometimes necessary to help us push through, to fight to do something we thought we couldn’t.”

Jeanne worked as a Dietician in a Cardiology outpatient office instructing and counseling patients on the benefits of eating a vegetarian diet. She published her first cookbook, Vegetarian Homestyle Cooking in 1998.

Jeanne got very sick with a heart condition and says that between 2000 and 2010 she was unable to do much. She was extremely tired with little energy.  “I didn’t think I was going to get better, but I did.  I got a second wind in 2011.  I had my life back.  You always battle with that feeling of ‘I’m going to give up right now.’ But what helps is saying, MY life and MY health is really important.  I do have days when I think it can’t get harder than this and then the next day is better and you regroup.”

After recovering from her heart illness in 2011, Jeanne reinvented herself again by deciding she could do podcasts on nutrition. Today Jeanne is a licensed Wellness Coach.  With the use of dictation software, she hosts a weekly podcast called Healing outside the Box (http://healingoutsidethebox.com) and writes an ongoing blog.  Jeanne’s MD has restricted her mobility to the use of only two fingers of her left hand. To listen to her podcast “The Nature Versus Nurture Dilemma”, in which she describes the day she was given her diagnosis of MD, go to http://healingoutsidethebox.com/the-nature-versus-nurture-dilemma/

She has set her sights on doing instructional cooking videos teaching children how to make their own bread as an example. Another passion of Jeanne’s is to get a vegetable garden in every school, growing food that is then given away.  Jeanne’s plan includes doing a video on how to grow a garden.  She is currently using the model in Salem, where every school has their own garden, and applying it to schools in Newburyport.

Jeanne sees the possibility of doing videos to teach home care providers in properly using equipment or transferring clients as beneficial. Always thinking of projects for the future, Jeanne is looking for suggested topics for podcasts and videos.  You can email ideas to jtiberioj14@gmail.com.

Since September of 2016, Jeanne has been receiving 24/7 home care from North Shore Elder Services. “It makes a difference knowing someone is always here.”  This level of care is what enables Jeanne to give back and continue contributing in positive ways to her community.  One of Jeanne’s caregivers, Debbie, has been with Jeanne fourteen years and another caregiver has been doing overnights for six years.  “It’s nice to have long term people.  You get attached and we share our lives.”

Jeanne believes that she represents the future in home care. “There will be more people like me; people needing help with mobility but who can function independently.”  Jeanne Tiberio will serve as an inspiration to those dealing with chronic diseases while maintaining their independence.  She has always been the person focusing on what she CAN do and not on what she can no longer do.

Author Info

Jayne Girodat

Jayne Girodat is the Communications Specialist at North Shore Elder Services. Along with ten years in the position of Caregiver Support Specialist at another ASAP, Jayne was a long-distance caregiver to parents for the same amount of time. That experience serves as motivation to better understand the issues of aging and to engage people in conversations about those issues. Jayne's background in teaching contributes to her appreciation of social media as a tool to educate readers on aging concerns. "I love asking people questions. Everyone likes to be heard. When you ask and then listen, you'll find everyone has a story and some of those stories are gems. I think it is particularly important to hear the voices of our older adults. Those are the stories I really connect to and hope to bring to North Shore Elder Services' audience."

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