Julie Fitzpatrick’s grandmother (above left) died of ALS and Julie (above right) has recently been diagnosed with Primary Lateral Sclerosis. Julie lives in Reston, Virginia and is a scientist, specializing in human health risk assessment, for the U.S. Environmental Protection Agency.
ALS changes countless lives. It is nearly impossible to count every person. It is not just the people with ALS, but everyone they touch and everyone who touches them and on down the line.
From the time I was a small girl I knew that my grandmother, Mildred Anderson, died from complications resulting from ALS. She died in February 1960, when my mother was preparing to give birth to my older brother. One of the big regrets of my mother’s life is that her mother never got to meet her four children and see what wonderful people they became. It is not just every person that has ALS that adds up, it is all the people in their lives and those that come after them. It could be said that “Every Family Adds Up.”
I began having symptoms in 2012 on a trip to Paris with my daughter – I was 50 years old. I didn’t connect what was going on with a motor neuron disease, but looking back that is when the spasticity started in my right leg. It took me a long time to connect all the different symptoms together, but every time I tripped I couldn’t help thinking that I was getting ALS too. I thought the stiffness in the morning shuffling to the bathroom was just about getting old. The symptoms got too much to ignore in late 2015 when I could barely walk from my desk to the ladies room after sitting at my desk for a couple of hours.
My first neurologist declared that I didn’t have ALS after an examination of about 10 minutes duration. He sent me to get a few tests and return in two weeks. Two months later, without knowing any of the test results, I went looking for a new neurologist. The second neurologist did an amazing work up and found almost nothing. He assured me I didn’t have ALS, but he couldn’t come up with a diagnosis so he referred me to the my third neurologist. In July 2016, I was diagnosed with a motor neuron disease and the good news for me is that it doesn’t meet the criteria for ALS. My symptoms include right spastic hemiparesis caused by Primary Lateral Sclerosis. It is not just every person with ALS adds up, but also those with other motor neuron diseases that may benefit from ALS research.
I’m scared – how long will I have left to walk before I need a walker? A wheelchair? I already have the coolest pink cane I could find. Everything I read says that with PLS the decline will be very slow – or will stair step and plateau as it works its way up my body from my right foot.
The medical community, those that work to find a cure and those that work at keeping ALS patients alive add up. How can we attract the best and the brightest to pursue a cure and in the meantime face the patients for whom they have no cure. Every doctor, nurse, medical technologist, receptionist adds up.
I know I’m in a much better place to be able to address my motor neuron disease than Mildred was in the late 1950’s. I have resources, both technological and financial, that she never had. I have hope that the break through to solve this complex puzzle is just around the corner and will come in time to help me and countless other currently struggling.
One thing remains the same – the devastating effect ALS has on the world – those that came before us and those who will come after us. Every Person Adds Up!
Each contribution to the fight against ALS – no matter how seemingly large or small – adds up. Please consider making a donation this August, and every August, until we have a cure. Then, tell your friends why the fight against ALS matters to you and encourage them to make a contribution, too!