New symptom trauma is a very real thing. I have had more than one conversation this month about the life expectancy and rate of decline in HOD patients. I sit here in these early morning hours, feeling like a fraud. You see, I emphatically spoke on the subject, confident in my not knowing, telling folks that we generally decline, and then plateau but we don’t die from this unique disease. Tonight, I discovered that the HOD Hallmark of palatal tremor, that I presumed I escaped, has been activated. The immediate fear was almost too much to handle.

I knew that something was happening, but I didn’t want to look and see it. My breathing had turned strangely jagged and rhythmic. It reminded me of my running days. Breathe in 2-3-4, breathe out 2-3-4. And the strange clicking sounds. I knew it was coming. However, I didn’t want it to become a reality by confirmation. Tonight, for some strange reason, I felt courageous, and knew it was time. I grabbed my small flashlight and a make shift tongue depressor and headed to the bathroom mirror.

Immediate Trauma: Seeing (and Googling) is believing!

I opened up wide, and said “ahhhhhhhhhhhhhhhhhhhhhhh”, just like the doctor always says. And there it was in it’s full, bouncing glory: palatal tremor. I immediately told myself to stop moving my uvula (the ringy-dingy thing at the back of your throat) like that. But I couldn’t stop it. I rushed out of the bathroom, straight to my office to Google videos of palatal Tremor. It looked exactly like what I was seeing. So I zoomed back to the bathroom and looked in a different mirror this time. It was as if I thought the the Evil Queen from Snow White was in my mirror being mean to me. I am not sure what I expected when I opened up wide and saw the same dancing throat muscles.

I am the founder of HODA, for Pete’s sake! Why now? My progression has plateaued for a while. I have been at this for 3 years, so why now? I have been lying in bed, brain swirling deep down a rabbit hole of what my new-new future looks like. I was starting to get used to what I knew HOD was for me. And then the weird breathing. It started with just gasps for air at strange times. And then it was jagged breathing. I told my neurologist that I was breathing weird, but he didn’t seem to think that should be high on my list of concerns. I don’t disagree. But now, it is here. And it is all I can feel.

Symptoms get in your head and leave a trauma dump in their wake!

My first symptom of Hypertrophic Olivary Degeneration was right-sided numbness. I remember vividly that I was working from home. It was late in the work day, Close to quitting time. I remember suddenly realizing that half of my body was numb. I immediately called my neurosurgeon’s office, and they didn’t seem concerned at all. In a strange way, that eased my mind. (I know better now!) You see, I was already on high alert. I just had brain surgery to remove a misbehaving cavernous malformation (on my cerebellum, 4th ventricle adjacent).

I had only recently learned that I had another, small cavernous malformation deep in my left front brain. I had been told that this one was inoperable, so we needed to hope that it continues to be quiet. (The little booger is still there and still minding it’s own business, thankfully!). I play the memory of that symptom over and over in my head. Even now, more than three years later.

My second symptom was nystagmus. Similarly, I was working from home and noticed that my vision was bouncing. It was impossible to track a row on my spreadsheet. Once again, the neurosurgeon was called, my concerns were dismissed, and I was asked to call my ophthalmologist to have my eyes checked. Like the good patient that I am, I made the first appointment with my long-time eye doctor, and found the nystagmus. When I think about this symptom, my stomach drops. The echoes of the fear I felt that day still resonates in my bones.

Managing the fear. Distraction isn’t a bad thing!

Which brings me back to this moment. I am sitting in my night clothes, in my office, listening to our elder cat argue with our teenage cat, while the dog issues a rather large and suspicious sigh. I understand, I can do with out the generational drama too, Petunia. I am sure that they are all sensing a heightened anxiety in me, where as I am usually cool (like The Fonz). I love that my first inclination was to come in my office and share my experience through this blog, in the hopes that someone can relate. Writing/journaling about these feelings and experiences when they happen has been the therapeutic answer for many years. Ask any self help expert!

Of course, there are other outlets that help process the trauma you are experiencing, too! Making art, going outside for a walk (or shuffle, or roll, or whatever you can manage at the time), watching birds, listening to music or a favorite podcast. These are all great alternatives to sitting and stewing in the fear of what might be and collecting more trauma. I think that it is perfectly normal to feel anxious and scared of a new symptom. I don’t think that it is healthy to soak in those feelings for long, though (more than half a day).

Growing from overcoming the anxiety of ‘what is next’.

When I was 22 years old, I would get unbearably painful stomach aches. At the time, I was advised by my doctor (and the emergency room doctor) that I needed to stop internalizing stress, or it will kill me. I had the benefit of learning earlier in my life that stress is not worth the price you pay for it. I didn’t always live by this rule, of course. But having a few rare diseases, I have really learned to manage stress. It will kill me if I don’t!

That is not to say that stressful events stopped happening in my life. That is far from true! I have just learned that I need to minimize what I take in, recognize what I am and am not responsible for, and then work through the problem, one small bit at a time. I am not perfect in my practice, but I sure do practice…a lot!

From these life experiences, I have learned to recognize when I am internalizing stress, and chart a new course. This helps me to minimize the residual trauma. HOD has given me an internal stress barometer. When I am getting overwhelmed, the right half of my face goes numb. Teeth included. That is my sign to take a breath, acknowledge that it is too much for me, and move off the subject. Listening to your body is an important skill to develop. Speaking of which, my body is telling me that my coping mechanism has worked, and I can go try to sleep now. My unknown future isn’t worth wasting anymore valuable sleep over right now.

Good Night, Friends!

Your turn!

What about you? Have you had similar experiences when a new symptom presents itself? How have you coped with these feelings? Tell us in the comments! If you like what you have read, please be sure to give us a ‘like’. It helps others to find us!