The Caregiver’s Story
Contribution by Patricia Ferro
Patricia is the actual mother of our ChangeMS founder and has become like a second mother to many of us involved with ChangeMS (including myself – the administrator of this blog). She is one of the strongest supporters of Tony, his dream of creating this amazing organization, and all of us who have been working to make ChangeMS the force that it has become – and is still becoming more every day
Hello, my name is Patricia Ferro: a.k.a Mom to Tony (the founder of Change MS), Frankie, Gio (our sweet animal son), and to many great souls who have become family. I was asked to give my story and perspective of Tony’s Multiple Sclerosis diagnosis and how it affected my family and me. This is a difficult task reliving experiences and speaking about myself, but if I can help someone else feel comforted by my words, it is well worth it.
First Reactions to Diagnosis
I felt lost, in a daze, in denial and was distraught beyond what words can capture. At first I couldn’t cope and resorted to crying for days. You see, Tony, my first born, always had hurdles in life I walked him through, but this hurdle hit me like a ton of bricks and for the first time I felt lost. After the days of crying, the next stage in my grief, was avoidance… I avoided people, my family, and even my own mother. Tony had asked we didn’t share this news with his adored grandmother who is in her 80’s. I agreed no good would come from telling her about her first grandchild she adores so much and the worry wouldn’t be good for her; however, I told my mom everything and now felt guilty about not sharing, but case closed: we decided she will not know.
The Reality of MS
My son has always been so strong with a reputation of being selfless. Observing him so vulnerable suffering with MS symptoms was pure torture for me. He has fatigue, muscle pain, tingling and numbness, dizziness, some cognitive differences, and vision loss. We had to have an in-home nurse come administer Tony’s first round of steroids due to his optic neuritis. I had no idea you could lose your eye-sight as a result of MS! According to the Mayo Clinic (2016):
“Optic neuritis is an inflammation of the optic nerve, the bundle of nerve fibers that transmits visual information from your eye to your brain. Pain and temporary vision loss are common symptoms of optic neuritis. Optic neuritis is highly associated with multiple sclerosis, a disease that causes inflammation and damage to nerves in your brain and spinal cord. In some people, signs and symptoms of optic neuritis may be the first indication of multiple sclerosis. Most people who have a single episode of optic neuritis eventually recover their vision. Treatment with steroid medications may speed up vision recovery after optic neuritis”.
Tony’s vision issues came after his diagnosis and as I sat there watching the nurse hook up my son to the I.V. (as my younger son was next to me), in my head I am thinking is this OUR (I say our because what my Son goes thru I feel deeply) new “norm”. The strongest person I know is helpless at this moment – tied to a machine. A rush of feelings flushed through me and I left the room to compose myself. With a fresh attitude, I went back in the room and kept Tony and his brother company. Tony’s state amazed me and again brought me strength.
I always thought I was a very strong-minded individual who always handled what life threw at me, but I was in a fog I couldn’t escape. I couldn’t understand why I couldn’t seem to shake this and asked myself, “WHY IS THIS DIFFERENT”? I believe MS has a stigma of becoming wheelchair bound and death attached to diagnosis. So, one day Tony comes home, look at me, and says “When are you going to snap out of this mom; it isn’t good for you and besides I am the one diagnosed with MS”. I snapped back, “I am your Mom and if you have MS, I do too”. That evening I went to bed thinking of his words and something snapped in me, but for the good this time. I decided I would start researching MS and felt my inner strength grow which gave me a feeling of hope for the first time.
Where there is Knowledge there is Strength
Tony mentioned his thoughts of conquering MS without medication so researching MS was now an obsession for both Tony and me. It was both exhausting and overwhelming at times, looking at all aspects of the diagnosis: symptom management, lifestyle choices, medication versus no medication, fitness routines, etc. I knew I had to keep searching for answers because how else could I help him? Tony decided he wanted to take a functional medicine and holistic approach to healing; I can’t say I was on board with this at first but was open to help him find doctors in our area with holistic approaches. This holistic world was so foreign to us; but the more I researched I saw validity to the data and purged my kitchen, bought Paleo nutrition books, juicing supplies and supplements, herbs, essential oils, and more! This was getting exciting; the practices we put in place for Tony would help me and the rest of our family as well! After learning so much about organic foods, gluten, GMO food, etc. I felt guilty of poisoning my family with food I fed them previously unknown to me.
Our New Normal
I must stress this total lifestyle change was completely overwhelming, was NOT an overnight process, nor was easy. Tony and I took this research component on and I had no clue where to start. Doctors are great but they do not have the time to talk to you about every aspect of your approach and you leave the office with more questions than answers often, so we decided to be proactive and take Tony’s diagnosis into our own hands. Since Tony’s diagnosis in 2012, I have been on a quest for a better life with better health; I will never stop learning and have become an extreme proactive mom. He is my son, so why would I not be proactive; that is what truly snapped me out if my sadness is being there for him, like I always have been.
My Message of Hope to You, My Family, and Myself:
It truly is not easy watching your children go through the hand they were dealt in life; Tony was always both mentally and physically strong so when I saw a temporary weakness in him due to MS it was unbearable to me. However, to see him 4 years later is such a joy, I find myself forgetting he has MS. I hope and pray he stays on this path to health and happiness and no matter what age he is, he is still my child. Tony always has been selfless with a huge heart and took a negative in his life and made it a positive by forming Change MS (a local non-profit dedicated to helping others with MS and their caregivers). I joined him immediately in his quest to provide more support to people dealing with MS by helping in the operations, sharing the message of hope, and inspiring others to be proactive in symptom management. Change MS is a family and they hold each other up when needed. I have read if you take one good out of a difficult situation and concentrate on the positive, it helps. The one good I have taken out of my son’s MS diagnosis is: We both live consciously now and mindful on his health optimal best. I can only do my best in helping him and he must do the rest. As Tony’s mother and any other mother know, we are happy and healthy if our children are. I know there will be other challenges along the way, but we will stay strong.
Thank you for your time,
Patricia Ferro aka Proud Momma!