Name: Laura Rose Ferrarone
Where do you call home? Rochester, NY
Who do you live with? I live alone in my own home, rented from my parents. I have help 24X7.
What's a typical day for you? I rise by 8:30. Typically do some PT stretching before I get out of bed. Get ready for the day and have a decent breakfast. I have to take some heart-related meds along with blood thinner. I need to take my time with eating so I am not out of the house until at least 10. Almost every day I get out. I volunteer at a Senior living facility where we play games with residents and we are doing a Yearbook project where we interview them and add their biography to the Facility Yearbook. That has been a learning process. I plan and shop for my weekly meals. I am pretty health conscious. I like to visit with some friends who have various disabilities and others not disabled. I have a wonderful family around me so I see them also. I listen to Audible books as my eyes are not too good for reading. I have hearing aids with the Bluetooth so my books go right into my ears. Of course, being a young woman I love to shop! If absent too long the Mall security calls me to find out where I am:) In the evenings I like to play Bananagrams, watch old sitcoms, do App surveys on my iPhone for money and I love, love, love the Game Show network! It's how I end my day.
How long have you known you are living with FA? My sister had FA so I knew pretty early, like 5 years old, that I also had it.
Are there any others with FA in your family? Sister - Sara, sadly gone from us for almost 7 years.
Describe your transition from walking to walker/wheelchair. I was able to walk with a walker until my scoliosis surgery at age 12. After that, I was too imbalanced to walk so started to use my manual chair. At graduation, I modeled my new power wheelchair and remember that feeling of independence when I rolled myself across the stage.
What do you like to do to stay active and what type of exercises work for you to stay strong? I am not great at exercise but, do PT stretching daily. I also like to swim, the best I can, as much as I can in the summer months.
Do you have any hobbies or special interests? This is tricky because I can't do much with my hands anymore but, I like to do things for other people that make them feel loved. Recently I sent a couple of packages to some FAer's who were having Scoliosis
surgery to let them know I was rooting them on.
What is a good trick to make daily life easier? Keep a schedule; get out of bed in the morning and ask the other person how they are doing. Don't always be self-absorbed.
When FA gets you down, what do you think/do to feel better? Vodka. Just kidding. I have been through counseling which was very useful in dealing with anger or frustration. I surround myself with people I love and who love me. I call good friends to FaceTime and keep connected. Sometimes I shop:)
What is one way living with FA has POSITIVELY affected your life? It has brought me very close to the people I love.
What is a favorite motivational quote of yours? Tattooed on my forearm "Roll with it."
What is the best advice YOU could give to a person who has been newly diagnosed with FA? This isn't the end. Live life fully; enjoy and build friendships, stay close to your family and appreciate them. Have fun, make plans, do everything you can.
What is the first thing you want to do when a cure/treatment to FA is found? Travel more, with ease.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I have worked hard at not being defined by this disease. I don't think about it and I try to enjoy and be as normal, whatever that is, as I can be.
Tell us a little more about you...I have two loving parents and had a sister with FA, Sara, who passed away almost 7 years ago. She and my brother, John are older. John is married to Maya, my sister by marriage. They live in Manhattan and I love to visit. I have a dog, Emma, who sits on my lap all the time. I have traveled a fair amount and enjoy sunny places more than anything. Why I live in Rochester? I am not sure. I have a strong faith which sustains me. I was married for a short time and got to experience the wedding thing. It was a great day and that was the long and short of it. I love to laugh and I think I can be funny. I have unbelievable support with my staff; I am so grateful.