On November 5, 2022, I lost my husband Chuck at the age of 54 after enduring Creutzfeldt Jakob Disease (CJD) for only 57 days.
Many have asked me over the last several months what is CJD. So, here’s a brief overview: CJD is a degenerative brain disorder that leads to dementia and death. This disease may occur spontaneously, be inherited, or be transmitted by contact with infected tissue, such as during a transplant or from eating contaminated meat.
As CJD progresses, it can cause personality changes, anxiety, depression, memory loss, confusion, insomnia, lack of coordination, and balance issues, usually within a few months. There is currently no effective treatment or cure for CJD and it is always fatal. That is why I am committed to raising awareness and fundraising to find a treatment, and hopefully one day a cure, so that other families will not endure the pain of watching their loved one slip away as I did.
Chuck passed from an inherited form of CJD and was preceded in death by his mother in 2004, when she also lost her battle with this monster of a disease.
Fifty-seven days from the first symptom to his passing; it's unimaginable sometimes how quickly this happened. The first symptom surfaced on September 10th, when Chuck mentioned to me that he was having a hard time hearing, especially female voices. We never expected that this symptom would be the beginning of the end. We thought it was age and exposure due to his time in Iraq and Afghanistan. We made an appointment with an ENT doctor, and his hearing tests were normal. Quickly other symptoms were emerging, as he began having a hard time concentrating, his speech began to slow, and he became a bit unsteady on his feet.
By October 4th, we had been to three different doctors with no conclusive diagnosis, so we decided to go to the ER. Chuck was admitted to a local hospital here in Jacksonville, FL that afternoon, where over the course of 10 days he was checked for everything imaginable, except for CJD. The Doctors told us it was their protocol NOT to test for diseases when there is no treatment. Our response to that was “But there's familial history of this disease, don't we want to rule that out?” Every time we asked about CJD testing, we got the same answer, “It's our policy not to test for diseases that have no treatment;” they always followed up that response with - “…but, we don't think this is CJD.”
Instead, precious time was wasted and they diagnosed Chuck first with Myasthenia Gravis and then changed the diagnosis three days later to Autoimmune Encephalitis. After this 10-day stay, where he endured four MRIs, a 54-hour EEG, a Lumbar Puncture, and five days of copious amounts of steroids (to treat the autoimmune diseases he didn't have), they sent him home with several outpatient follow-up appointments and a recommendation that I get him into Mayo Clinic here in Jacksonville.
Once we got Chuck home, his decline began to intensify. His speech became worse, he was confused about what time of day it was, he was struggling to make decisions, he began walking with a walker, and sometimes he didn’t recognize me and would ask me why I was in his house. All of this was scary for both of us because we weren’t sure what was really happening, especially since the doctors kept telling us they didn’t think this was CJD. So, we kept hoping we’d wake up one morning and things would just be okay again.
Getting into Mayo on our own was practically impossible, so I decided to leverage my resources and reached out to my now former colleagues at Florida Blue for help. They quickly jumped in and helped me get him into Mayo within 48 hours of my ask. I will never forget how quickly they helped us, and I will always be grateful for those colleagues who were there when we needed them the most.
After two appointments at the Mayo Clinic, one with a neurologist and the second with a Genetic doctor, Chuck was admitted to the Mayo hospital on Thursday, October 27. The next day, all of the same tests that were performed earlier in October at the local hospital were again administered by the doctors at Mayo.
Saturday, October 29th is a day I will never forget for the rest of my life. I was greeted by one of the neurologists who was working Chuck's case. She took me out of his room and showed me the last MRI they performed on him the night before. In total, he had five MRIs performed over three weeks. The Mayo doctors lined up the five MRIs and identified the progressive ribboning in his brain, consistent in CJD patients. That Saturday morning, they gave me his diagnosis with 99% certainty - Chuck had CJD. There it was - the worst possible news we could have received.
The neurologist then discussed with me what our options were because Chuck wasn't going to survive: Skilled Nursing Facility or Hospice. She explained how the two options were completely different; the nursing facility could continue to keep him alive, and hospice would make him comfortable. Reading between the lines, the nursing facility would be for me, and hospice would be for him. As much as I wasn't ready to let go, I had to choose what would be best for him. After talking with Chuck's family, we agreed that hospice was the right thing to do. This was another decision I will never forget.
Two days later, on the afternoon of Monday, October 31st, along with his aunt and one of our close friends in the room, I told Chuck he had CJD. That was one of the scariest things I have ever had to do, besides actually signing the hospice document. When I told him he had CJD, I was afraid he would become upset and agitated, but instead, I was met with calm, peace and understanding, and I could tell he was more worried about me than himself. It absolutely broke my heart to tell him his fate, but it calmed me somewhat to understand and recognize that he was at peace.
We moved him to the Community Hospice facility closer to our home on Wednesday, November 2nd. I was struggling with how much the hospice staff was medicating him, so I asked them to back off a bit that evening. The next day I went home to shower and when I came back, he was clearly agitated by the disease progression, however the minute I walked in he calmed right down. About an hour later, Chuck had what I would describe as a big hallucination - one where I felt like the room was filled with people that I couldn't see; he was smiling and laughing and fist bumping someone. In that moment I knew where we were. After that episode I asked him what he wanted to do. I said we can keep listening to music and I can keep holding your hand and talking to you, or I can ask the nurse to give you something that will help you relax. He chose the latter, he let go of my hand, that was the only way he could communicate with me at that point. I said OK and I went and got the nurse. That was the last time Chuck & I communicated.
He left me on Saturday evening November 5th....57 days start to finish and only one week after having a diagnosis. I still shake my head every day in disbelief. I think I will do that every day for the rest of my life.
Our story is why I am making it my personal mission to work with the CJD Foundation to raise awareness, education and funds to:
- Make sure other families aren't met with answers like we received at the first hospital, and
- Fundraise to ensure the researchers who have dedicated their careers to finding treatments and a cure have the necessary resources to continue their work.
Chuck was a kind, caring, smart and brave human being. He was an inspiration to so many both in his military and civilian careers. He loved the work he did as Senior Chief Petty officer and Intelligence Specialist in the US Navy. He gave our country 28 years of service and was a proud but humble Bronze Medal recipient for the admirable work he did in 2006.
Chuck also worked in a civilian capacity with JPMorgan Chase for 9 years, always within the Know Your Customer (KYC) organization, focused on anti-money laundering process. His most recent role was Executive Director leading KYC across several different payment platforms for the bank. He loved that job and he truly enjoyed not only problem-solving but leading his team to find innovative ways to continue to learn and grow as well helping them excel in their careers.
Chuck was also my best friend; I was lucky enough to have known him for almost 24 years and we were blessed to have nine years together and six years married. We were truly a team, we did almost everything together and supported each other in every way. Team Queso started after a silly conversation we had years ago. Romano is a cheese, and cheese in Spanish is Queso. After that conversation, Team Queso just kind of stuck. He was always the coach of our team, and now willing or not I have been promoted to coach. And with great certainty I can say I learned from the best about keeping the team alive and in a winning position; always showing up with integrity, perseverance, bravery and most importantly, doing all of that with love.
I really appreciate your reading our story and supporting those of us who have been impacted by CJD. I urge you to consider supporting my team through a donation or by joining us as we walk around Riverside Park in Bonita Springs on October 7.
Thank you! Be well and always take care!
With love and endless thanks,
Shannon
Shannon Romano Team Captain $425.80
Hope Franks
