Syringomyelia + Sisu

Syringomyelia is not supposed to be a genetic disorder according to many experts. A picture of my great grandfather’s hands makes me question whether that’s a fact. 

His right hand was bandaged here.

My hands today, are curling shut from spinal cord damage in my neck.

I had a spinal fracture in April of 1964. My spine was fused with bone taken from my hip in October of 1964. Syringomyelia started in my spinal cord around 1970 but was not discovered until 1985. It continued to progress until my whole left side, from my waistline to the top of my head became numb. 

Syringomyelia – Wikipedia A drain shunt was put into my spinal cord to drain off pressure in 1985. That helped stop some of the neurological damage. In November of 1985, my left shoulder became a Charcot joint.


The joint is gone, dissolved in one month.

Neuropathic Arthropathy of the Shoulder (Charcot Shoulder) ( 

In 2000, I had surgery on my cervical spine for stenosis, a plate with six screws was put on the front of my neck at that time. In 2018 another shunt was put in at T-4 to drain fluid from my cervical spine area. 

I hope my hands never get like this.

The total length of my spinal cord is now hollowed out with a large cavity, thankfully the pressure is not high.



Sisu is a Finnish concept described as stoic determination, tenacity of purpose, grit, bravery, resilience, and hardiness and is held by Finns themselves to express their national character. It is generally considered not to have a literal equivalent in English.

I contacted this organization NORD in 1985 when it was considered a rare disorder. Barbara White and her husband started a support group in Texas a year later.

I Defied the Odds



An unexpected victory? A snapshot of an unlikely moment? This week, show us something that defies the odds.

I Defied the Odds

In this more recent picture I was admitted to the hospital with high fever and chills, being diagnosed with a severe bladder infection. They ran a central IV line into my arm, through a vein, to a large central vein of the heart. I spent three days receiving antibiotics through the I V. They finally got the infection under control and I was allowed to go home. I considered this one ‘more’ time in my life when I was lucky enough to go against the odds. To defy the odds is really my life story. I feel very fortunate, exceedingly thankful!

I was diagnosed with a neurogenic bladder in 1985. That pretty well means your bladder doesn’t work right anymore and your subject to everything that entails, plus infections. In most cases an indwelling catheter is used to eliminate the urine from the body. In my case, I somehow learned to manage to empty my bladder by forcing downward pressure with everything below my diaphram, all of my guts pushing against the bladder to empty it out. My bladder was pretty much an empty sac, with no muscle left in it. This self learned process has worked out well for me. Doctors through the years have wanted me to use a catheter, if I had, I probably would have had multiple infections and been dead by now. I take high doses of cranberry supplements and vitamin C daily, also try to drink lots of fluids.

“Neurogenic bladder is bladder dysfunction (flaccid or spastic) caused by neurologic damage. Symptoms can include overflow incontinence, frequency, urgency, urge incontinence, and retention. Risk of serious complications (eg, recurrent infection, vesicoureteral reflux, autonomic dysreflexia) is high. Diagnosis involves imaging and cystoscopy or urodynamic testing. Treatment involves catheterization or measures to trigger urination.”

My bladder problems go all the way back to 1964 when I had a spinal fracture, nerve damage was done to my bladder and bowel control. I spent three months in the hospital in 1964 on a Stryker Frame. I walked out of that hospital with the use of nothing but a cane. Some felt at that time, it was against the odds.


After about a year of recovery, I spent close to 20 years on many different jobs. My original spinal cord injury continued to slowly take its toll on my body. Syringomyelia started destroying my spinal cord from the inside. I was not diagnosed until 1985 with that rare condition. I have had two different drains, “shunts” placed in the spinal cord to relieve spinal fluid pressure build up. I can still walk today. I need a walker to hang on to. Life is good, even when it’s not so good, sometimes we have to just defy the odds.