A LIFE SENTENCE

Written by: Brad Asher, an HOD patient

In mid-April 2017, there was a non cancerous tumor found in my left brain (Cerebellum/Brain stem) on an MRI. I came home 15 weeks later. 

On May 1 & 2, 2017, I underwent 22 hours of surgery to remove a baseball sized tumor from my brainstem. The non malignant tumor (Meningioma) was growing for 30 years.

It’s a miracle I am alive. Thank God for a great neurosurgeon.  

The tumor has not returned but the surgery left me with double vision, dexterity issues, speech and memory challenges, poor depth perception, headaches, drooling, 1/2 a desensitized face,  throat, lips, & head. 

I have seen Health Care workers at 4 different hospitals. 

I have done therapy in 13 different facilities. 

I had to learn how to walk and talk 3 times in my life.

Now I use a walker. 

In 2018 I developed a rare brain disease. It’s called Hypertrophic Olivary Degeneration. (HOD), along with Ataxia. There is no cure. 

The disease is very rare and affects each person differently. 

I do my best relearning what I once could do without thinking. It’s called neuro plasticity. 

I have yet to meet a Doctor that has heard of HOD never mind working on it. . Even seen Doctors Googling it during my appointment. 

I have issues with balance, speech, swallowing and gait.

I choke a lot. Sometimes on saliva. 

Since I developed HOD I have developed palatial tremors and strabismus (bouncing left eye). Although I am strong I do feel fatigued a lot. No description. 

I walk with difficulty and like a toddler. 

I am a fall risk. Grab bars, gait belts, counters and walls are my friends. 

I fall a lot. Always backwards to the left. 

I have have been taught to adapt and adjust my life. 

I am thankful for all the Therapists, Nurses, Surgeons and Doctors I have seen. Some good. Some not so good.

You can tell the difference. 

I still go to therapy weekly. 

I exercise daily on my own. 

I ride recumbent bikes when it’s warm. 

I drive, shop, cook and clean. I take a lot of breaks. 

So I live on. Maybe there is a cure for this disease someday. A day at a time I fight HOD. 

I have been married for 41 years to my wonderful wife Beth. She is a Godsend. She challenges me a lot. I’m no prize. 

HOD will not be the cause of my death, but it is a life sentence.