By Christine Moretti
Like many people with ALS, my journey to diagnosis has been a crooked one. In 2012 I suffered a paralyzing seizure that affected my left side from the waist down. This seizure occurred 13 days after the sudden, devastating loss of my sister — an event that may have brought about the seizure. A meningioma brain tumor was found to be the cause.
My weakness reappeared in 2013 in my left foot. As the weakness worsened and continued up my leg, my neuro oncologist thought the benign brain tumor was the culprit. I consulted with a neurosurgeon, preparing myself for the possibility of brain surgery; however, the neurosurgeon felt there was something else going on with my leg.
Enter the neuromuscular doctor, an ALS expert, who told me at my first appointment that I had a motor neuron disease (MND). I wasn’t totally shocked. I had already asked my doctors about ALS. All my internet research kept leading me back to ALS every time. I struggled to correlate my symptoms with the meningioma. After some additional testing, I was diagnosed in January 2016 with Primary Lateral Sclerosis (PLS), a rare variant of ALS.
Even though ALS affects my every day actions, family remains the center of my life. My husband, Al, and I just celebrated our 34th wedding anniversary on April 23rd. Little did either of us know what those wedding vows would mean now that ALS has struck our lives. Al is my constant companion. He is a tireless and thoughtful caregiver. We also have two wonderful sons, Josh (31) and Jeremy (27). They are the lights of my life. Being their mother and sharing in all stages of their lives is the true definition of joy for me. I am very thankful that our family is so close. My twin brother, Greg, has also recently relocated here to the Philadelphia area. Our twin bond has always been strong. It means so much to me to have my whole family together.
Our family also includes some four legged members. We have fostered and sheltered rescued Cairn Terriers. We adopted two Cairns, Zoe and Simon. Simon sadly passed away this year after a valiant fight with cancer. Zoe is going on 10 years old, but she is still very perky and spunky, living up to her terrier reputation. I am drawn to the tenacity of terriers. I think it relates well to how I have to battle my own disease. Our terriers inspire me to keep being tenacious, no matter what life throws at me.
There are other ways to be tenacious, and that includes filling my life and home with art. Anyone who knows me knows that art has always been an important part of my life. Decorating our home has been a passion of mine throughout our married life. It would be nothing for me to wake up in the morning and decide to paint and redecorate a room. It has been endless fun through all the many house transformations. My family supports my battle with ALS just as much as they have supported my love of art. It was an absolute thrill when my artistic endeavors were acknowledged when our home appeared in the Haven Homes section of the Philadelphia Inquirer in a February 2011 article entitled “Home is Where Her Art is”. I consider my home and garden a retreat. I still manage to do small projects around the house. Art is my therapy.
There are times when accepting this diagnosis has been quite daunting. Years ago I read “Tuesdays with Morrie” by Mitch Albom. I remember how I cried at the end, and how my blood ran cold at the thought of having this dreaded disease. Now I have come face to face with it. In the past 10 years I have had uterine cancer, a brain tumor/seizure disorder and now a motor neuron disease. This last diagnosis eclipsed all the others, but, like my terriers, I remain tenacious.
When you have a MND, every day is a balancing act. You must constantly negotiate what you want to accomplish vs. what you can no longer do. Muscle spasms, shooting and numbing pains, non-stop neuropathy: these are the constant reminders of your limitations, as well as harbingers of what will come. Some people progress slowly; others very quickly. I say this not to seek pity or sympathy. I say this to bring awareness of the insidiousness of this life-altering disease.
I read somewhere that a researcher said ALS is not an incurable disease, just an underfunded one. I believe that, too. I also believe there is a viable treatment/cure right around the corner. Like many of us, I am an active participant in research studies. For myself and all of us, I will not give up hope.
Part of my hope depends on resources and funding from those in the position to fund a cure — our federal and state governments, private donors, pharmaceutical companies, and The ALS Association, in addition to various other ALS non-profit organizations that provide much needed grants. ALS has time to wait, but those of us who suffer do not.
I remain tenacious in this battle, not just for myself, but for others affected by ALS. Maybe seeing my terriers is a reminder that we have to fight for each other. I will advocate and raise hell until we make the impact we need to make sure ALS is not underfunded. Life is beautiful. I’ve seen it through art, life, and even pain, and ALS will not stop me from recognizing that beauty or from sharing it with the world.
Find ways you can be tenacious in the fight against ALS at www.alsphiladelphia.org
Join Christine at the 2017 Phillies Phestival with tickets at: http://philadelphia.phillies.mlb.com/phi/community/phestival/