Lisa Antonelli Cole's Journey to Diagnosis
I was diagnosed in December 2013, though I was misdiagnosed for several years prior. I feel very badly that misdiagnosis of ataxia is still going on with so many people.
Earlier that year (2013), I was doing a stress test on a treadmill and I almost fell. That cardiologist said I should get that checked out. I blamed it on my knees and made an appointment with the orthopaedic.
He said my walking is not due to my knees and suggested I should go and see a neurologist. He referred me and so I did.
I went to the neurologist; he listened to me and sent me up to Gainesville for a second opinion. Both doctors agreed and diagnosed me with Spinocerebellar Ataxia. I got my family history and MRI’s. My Dad, my brother and my aunt all have the condition. My father passed away four years ago, he was in a nursing home from not walking (due to ataxia), non-Hodgins cancer and he had COPD (chronic obstructive pulmonary disease). Anyway, my family suspected my grandfather (his father) had it too due to the symptoms he was showing. My family just passed it off as the Antonelli thing. Back then, no one was aware of what this was or seemed to even care.
I didn’t go to doctors for about four years prior to my diagnoses. I was concerned about my walking. I was going to several clients a week and teaching people about QuickBooks and how to utilize it efficiently. Now, I do accounting in my office and will log onto my clients’ books (data) if they have a question. Now, I can do all this in my office rather than having to physically go there.
I complained for many years about being dizzy (starting in 2005-2007), not feeling balanced, no co-ordination and when I close my eyes, I would feel like falling over or swaying.
I went to an ENT (ear, nose, and throat). I was treated for vertigo, another long word and I was also sent to physical therapy. I stopped complaining, when I saw “CHRONIC ANXIETY” in the office visit notes as one of the illnesses, even though the dizziness and unbalance feeling was still always happening, I stopped going to doctors and just dealt with it.
I didn’t have anxiety, I knew something was wrong.
When I told him what I have (the diagnosis), the ENT doctor said, “that’s not his field”. In a way he’s right. But I do feel all doctors should have some level of understanding of what Ataxia is or possibly some other form of the disease to help steer people in the right direction if they can. They cannot just don’t pawn the patient off to anxiety and not for many of us to suffer because some doctors do not listen or really care what you have to say. I know my body. I knew something was wrong. It’s like when you drive your car every day and suddenly it doesn’t feel right, you try to explain it. Bad analogy, but nothing gets fixed until it’s broken and then things are too late.
I am glad I went to the right doctor (neurologist) who finally listened to me. I got my diagnoses, which is not a good one, but now I have a reason as to why I have no coordination, balance, etc.
I started a support group here on the East Coast of Florida (the Treasure Coast) to help as many as I can, while I can.
We are going to have our 3rd Walk n’ Roll to Cure Ataxia here in Port St Lucie in Tradition next May 2020. We want to bring awareness to many, many people. I am blessed to have so many great friends that help me have a wonderful and successful event.
Helping bring awareness to this awful disease not only helps with awareness but is helping so many others that can’t do anything and benefit from the NAF (National Ataxia Foundation) mission.
I am also trying to get International Ataxia Awareness Day- IAAD (September 25th) Proclamation here in Florida.
I do have another short story from a few years ago, the main point is that I enjoy doing the fundraisers and that I will continue to do them as long as I can.
MANY OF MY FRIENDS SAY THEY HAVE NEVER HEARD OF ATAXIA AND THEY ONLY HEAR OF IT THROUGH ME!
Please check out the few interviews that I have done. Plus, I am not done with interviews, there will be more to come.
June 2019 YouTube: https://youtu.be/u-nsU5pqDqs
Also, started the #AtaxiaRocks group on Facebook, sharing it all over the world.
On behalf of Ataxia and Me, I would like to thank Lisa for sharing her journey to diagnoses. Symptoms can seem minor and may not be fully explored, she shows the importance of speaking out when you think something is wrong!
If you would also like to get involved and share your experience with Ataxia or other rare condition, please get into contact with us through our social media linked below: