MSAV: Tell us about your MS diagnosis/journey and how long you have been living with MS.
DONNA: Looking back, my MS journey seems like a long one. It began way back in the early 1990’s with what my MD suspected was the Guillain Barre syndrome. I had all the symptoms, including a low-grade fever that lasted for over a year. At that time there wasn’t a test or treatment, so I read everything I could find about the syndrome and took every vitamin and mineral that was suggested. Finally, the fever returned to normal but the fatigue and tingling in my extremities remained. Over the next several years, the fatigue and tingling increased and new issues began. I was having odd pains everywhere – I described it as if I were a pinball machine. Also, my back became very stiff. X-rays revealed compression fractures and pinched nerves. I was given muscle relaxers, exercises to do and sent to a chiropractor. None of this helped – it even made the symptoms worse. On April 1, 2004, I woke up with a strange squeezing sensation around my torso (the MS Hug). Happy April Fool’s Day! More x-rays revealed more fractures and pinched nerves. Again, I was given muscle relaxers, exercises and sent to a chiropractor. Again, nothing helped. In 2009, I began stumbling and falling. I started dropping things. Spasms in my legs and forearms became so severe that the muscles seemed to freeze and would not move. Some days I had trouble thinking straight. The fatigue worsened. My legs were weak. The most distressing problem was what we now know are seizures caused brain lesions. The seizures began as an odd cold knot in the pit of my stomach that quickly spiraled throughout my body followed by profuse sweating and zoning out. By now, it was 2010. My PCP sent me for more x-rays and to a neurosurgeon. The surgeon ordered physical therapy, and the PT team discovered clonus in my feet and foot drop. After the neurosurgeon received the reports from PT, he scheduled back surgery and ordered a lumbar MRI. In the meantime, I started researching all the symptoms on my own. Soon everything I found had one common denominator: Multiple Sclerosis. Nope! I slammed the lid down on my laptop, put it on a shelf and stopped thinking of all the symptoms. That is until my PCP called me in for an appointment to discuss the MRI results. While I was waiting in the exam room, I noticed my medical file on a table. On top of the file was a letter from the neurosurgeon. He had cancelled the surgery and wanted me to be seen by a neurologist as soon as possible. The MRI revealed numerous lesions, and he was certain I had MS. I wasn’t shocked. I didn’t get upset. This was confirmation of what I already knew. Next began a year long journey of having every test possible associated with every symptom to both determine and rule out what condition I did or did not have. One neurologist was more concerned about the acute narrowing spinal cord and nerve impingement than the spinal cord lesions. In April 2012, I was given the official MS diagnosis and immediately started on the first DMT along with medications to help with the symptoms. Since then, there have been setbacks and recoveries and several DMT changes. In late 2017, I had a severe relapse that included worsening of the symptoms I already had, plus severe cognitive and memory issues. Bladder and bowel troubles began. This time, there was very little improvement, and my neurologist placed me on disability in June, 2018. The results from a new series of MRI’s alarmed my medical team so badly that I was sent for different therapies, more tests and neurosurgery visits. I currently have a pending procedure. So that’s basically my MS journey. Today, I continue with the DMT and medications, keep up to date with the latest MS news and do my best with activities of daily living and caring for my Mom. The one constant and uplifting factor throughout all of this has been that God has never left me. His Grace has provided me with care, resources and people who know and understand the challenges MSer’s face. For that, I will be forever grateful!
MSAV: How has the MSAV made a difference in your life?
DONNA: The MSAV first impacted my life by providing a wealth of information and resources that offered advice on anything and everything to do with Multiple Sclerosis. I actually began attending MSAV meetings while I was still in the testing phase for the symptoms. My first meeting was just after Suzanne O’Connell had taken over leadership of the group. Talk about dropping some knowledge! There was so much of it, but I needed it and was so happy to have it. Soon, my Mom and my brother, Kyle, started going to the meetings. Doing this helped them both to understand what I was experiencing. Listening to the pharmaceutical aspect of MS as well as hearing how others with MS dealt with and overcame the same challenges I faced not only encouraged me, but it also helped my family. The MSAV mini-retreats and Brian Mason Respite camps have been a true blessing, and I’ve made friends that will last a lifetime. If it had not been for the MSAV’s help, I could not have gone on the 2016 cruise to the Bahamas. I know that operating a non-profit organization can be laborious and difficult as well as rewarding, so a huge heartfelt thanks to everyone who works tirelessly to make this association such a success!
MSAV: Tell us some of the challenges you are proud of overcoming.
DONNA: Each and every MS symptom presents with its own challenge. For me, the key to overcoming these challenges was adaptation and resilience. The foot drop, numbness, weakness, fatigue, spinal cord lesions and pain causes mobility issues. I’ve adapted by wearing braces and using a cane and walker. Instead of going to grocery and department stores, I do almost all shopping online. The MS seizures I have are mostly triggered by sudden changes in light and prolonged changes in motion. Before I knew what the seizures were, I started experiencing them when leaving a movie theater. Moving from the dark theater into sunlight was enough cause one. Wearing a pair of very dark sunglasses when leaving a theater now keeps seizures at bay. Sometimes, something just cannot be overcome. Seizures have happened when playing a simple online game where colorful objects are continuously moving and bouncing. So that’s an activity that I had to give up. The most challenging symptoms were the sudden onslaught of cognitive and memory issues. These really affected my well-being in a negative way. Resilience is the ability to bounce back, adjust and move forward. My neurologist sent me to see a psychiatrist for an evaluation. I put into action the recommended coping mechanisms and pushed through the darkness. No matter how badly something feels, there’s always a brighter day ahead.
MSAV: What are your hobbies and how did you get into them?
DONNA: I’ve always been creative and have loved to draw for as long as I can remember. From elementary school and throughout my work career, I’ve created many poster boards, murals, flyers and brochures and other displays; winning a few awards along the way. My current passion is paper crafting, which includes creating greeting cards. Those who receive the cards seem to like them – they say it makes them feel special. Nothing makes me happier than to think I’ve helped brighten someone’s day!
MSAV: What is your favorite way to spend a day off?
DONNA: I had trouble picking out just one favorite way to spend a day off, so I’ve combined them. I would load my Mom, fur babies (Koko Bae and Buster MacGoo) into my Mazda and drive to the nearest beach while picking up family and friends along the way. We’d find a shady area to have a picnic. If there was time, we would all go see an exciting blockbuster adventure on the big screen. That’s really silly, I know; but any one of my four favorite things would be enough. (1: Spending time with family, fur babies and friends. 2: Spending time outside being careful not to get overheated. 3: Simple trips. 4: Movies.)
MSAV: What advice would you give to someone newly diagnosed with MS?
DONNA: Don’t isolate yourself. Find a support group either locally or online. Don’t be surprised if someone you are close to cannot seem to understand what you are going through – stay strong. Learn as much as you can about MS and your own symptoms and try to stay up to date on the latest research and treatments. Keep a log of your symptoms. Tell your medical team everything including your physical and emotional symptoms and how the symptoms affect your daily life. While it’s important to stay aware of how you feel, don’t get obsessed over it. Most importantly remember you are never alone. Keep the faith!
MSAV: What else would you like to share about yourself?
DONNA: I live a small, quiet (but very busy) life and enjoy the simple things. I’m my Mom’s caregiver. Taking care of her is an honor and a joy. Faith is the most important element in my life. Mother Teresa said, “Be the living expression of God’s kindness; kindness in your face, kindness in your eyes, kindness in your smile.” I try to live by those words every day.