March 18, 2015
Patty Martini was my sister and my best friend…she was diagnosed with ALS at the age of 25.
For those of you who aren’t familiar with the disease, ALS is a progressive, disabling and ultimately fatal disease that attacks the motor neurons in the brain, brain stem and spinal cord. The resulting motor neuron loss causes increasingly debilitating paralysis as the muscles of the body waste away. Victims are cruelly aware of their fate as they gradually lose the ability to control their muscles, to communicate, and eventually to breathe.
The course of the disease is different for everyone and some people live with ALS for several years. Throughout her battle, Patty remained a funny, loving person who would do anything for anyone. Growing up, I remember that she always wanted to help someone when they needed it. But, she could also be a little bit stubborn. When Patty could not drive anymore my dad would take her to work and he would say, “We have to listen to this crap?” (Matty in the Morning and Kiss 108), and she would say, “You’re driving my car, you have to listen to my station!” Dad eventually learned to love it and enjoyed the ride to work even more.
One of the first things ALS took from my sister was her voice. However, we soon came to find out that Patty did not need to talk. She had these big, beautiful brown eyes that did all the talking for her! All she had to do was look at you and you knew what she was saying. Her happiness, her frustration, her gratitude, and her love – it all showed in those big brown eyes. Patty fought ALS differently than most. The disease affected her upper body early on, whereas usually the lower body is affected first. This was particularly disturbing when the disease took her ability to swallow food, because Patty LOVED food! The hotter the better! Unfortunately, there was no spice in the food that was fed to her through her feeding tube.
Patty was a girl, who grew to be a woman, who liked all the things we females do: pretty clothes, nice hairdos, polished nails and the ability to flirt at any opportunity. Many days were spent with my mom, her main caretaker, and her ‘almost niece’ Ari, playing dress up or baby dolls. Even when Patty was in the latter years of the disease she would still enjoy a manicure and pedicure from a friend and the opportunity to flirt with the guys on the Stoughton Fire Department who came to take her to many emergency hospital visits. Patty was always Patty. Throughout her battle, she remained a funny, loving person who would do anything for anyone.
My sister died at the age of 30, five years after her diagnosis. It has been almost 21 years since our loss and while our family still misses Patty very much, we are thankful to be blessed with wonderful memories and friends like you, whose generous contributions of time, money and energy make it possible for us to make a difference in the lives of other ALS victims and their families.”
It is an honor to share any story about my sister Patty and any awareness for ALS.