A brief description of Brad’s journey…. by Lauren, Wife (October 5, 2023)
The following is an accounting of one patient’s story with HOD. As we know, every patient is different. The stories are different, the symptoms are different. But the human condition, the grief, hope fear, and frustration….that’s almost always the same, though it comes and it goes. Some days are harder than others. Some symptoms are manageable while others present a constant interruption in day-to-day life.
Let this story of HOD life be one, not only of hope and resiliency but also of understanding and the power of laughter. There is hope. There is resiliency. And we should try to learn from that. But more to the point, it is a patient story from someone who gets it. From a wife who has watched her husband fight this battle with science and medicine, rather than vests and camouflage. This couple, Brad and Lauren, use humour and push through these obstacles. Let’s take that in. Let’s try to hold on to that.
Brad Haidner – I Am HOD
Friday August 13, 2021 – Met with a neurosurgeon to discuss options to remove “lesion” at the base of Brad’s brain. Surgery is the only option; unable to identify prior, it has to go. Symptoms were headaches, poor balance, and vision.
August 23, 2021 – Suboccipital craniotomy with a gross total resection. (Normal words: brain surgery at the base of the head). Surgery lasted much longer than anticipated, tumour was very “stuck” (yes that’s the Dr.’s term).
Pilocytic Astrocytoma – normally found in children under 10 years old, if not found early usually not survivable. Translation – he got a kid tumour – no answers on that – when? how? Just moving forward…it’s not cancerous (whew!). He’s left with right-side palsy, unable to walk, speech and vision issues.
October 20, 2021 After 3 months of intense rehab (speech, balance, walking, etc.) he is able to leave the hospital and come home! With the assistance of a walker, cane, and eyepatch he is home! Many appointments and rehab to follow. When life handed us an eyepatch we put a googly eye on it and moved on!
Mar 2022 – Multi-nerve transfer and grafts for right side nerve palsy (Normal words: removed nerve from his left calf and installed it in his face to try and regain movement in the right side of his face). Tip: Your idea of a “small incision” and the surgeons are not the same. This procedure was not deemed a success (partial improvement).
HOD life begins
June 20/22 ER – sudden pulsating tremor in his throat/neck, hard to swallow. Balance is worse (Ataxia). Vision and headaches are worse. Hypertrophic Olivary Degeneration (HOD) is diagnosed. Super rare, no cure, no medical regime, trial and error with various medications to slow the palatal tremor and occipital tremor (bouncing eyes and vision – sees double out of both eyes). Doctor compares symptoms to Parkinson’s.
“In this connected, over-informed world, I went straight to Google to find very little information. The best click ever was Hypertrophic Olivary Degeneration Association (HODA). There are others…such a relief! We are so grateful to HODA for all the work being done to bring awareness, research and a community together.“
Lauren H. (HOD Wife)
Let the “Wheel of Meds” begin… self-explanatory. Challenging?…An understatement. Frustrating?…Beyond belief. This sucks the big one!!!
Brad is the most resilient human I know! HOD life may be challenging his physical abilities to the max but it can not take his sense of humour and how much he is loved! He manages to get food and meds down no matter the difficulty. He immediately started on the treadmill, and began a rehab workout at the University three days a week. Zoom workouts with Neuro Saskatchewan. Weekly support meetings with the Southern Alberta Brain Injury Society. He is able to utilize the Handi-Bus to get to and from places. A bookworm, he’s now a tapeworm (sorry I couldn’t help myself!). Shopping trips, family gatherings, yes life is much different but it’s worth it.
Seems appropriate that on this HOD Awareness Day – October 5 – Brad has an MRI of his brain and cervical spine scheduled. Everyone knows the stress of waiting for those results…
We love to share your HOD patient and caregiver stories. Please reach out to us at contactus@hodassoc.org if you are interested in sharing your story with the community. We have a few others you can check out in the meantime!
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