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Wednesday, October 30, 2013

My Husband's Condition

I have mentioned on several occasions that my husband and I are both disabled.  I have discussed my conditions, and their effects in numerous articles, but I haven't spent a lot of time discussing Dale's condition.  It is a fairly rare condition, and there is no cure for it at this time.  It is progressive and debilitating.  We have been dealing with the ravages of this disease for over ten years, although it has only been in the last three that we have actually had a diagnosis.  Dale has a condition called Spino-Cerebellar Ataxia, or SCA for short.  There are numerous types, some hereditary and some not.  Thanks to genetic testing, we know that Dale has the non-hereditary type.

According to the National Institute of Neurological Disorders and Stroke, SCA is defined as the following: 

"Ataxia often occurs when parts of the nervous system that control movement are damaged. People with ataxia experience a failure of muscle control in their arms and legs, resulting in a lack of balance and coordination or a disturbance of gait. While the term ataxia is primarily used to describe this set of symptoms, it is sometimes also used to refer to a family of disorders. It is not, however, a specific diagnosis.
Most disorders that result in ataxia cause cells in the part of the brain called the cerebellum to degenerate, or atrophy. Sometimes the spine is also affected. The phrases cerebellar degeneration and spinocerebellar degeneration are used to describe changes that have taken place in a person’s nervous system; neither term constitutes a specific diagnosis. Cerebellar and spinocerebellar degeneration have many different causes. The age of onset of the resulting ataxia varies depending on the underlying cause of the degeneration."
For many years, we were told that Dale was having strokes.  Periodically, Dale will experience a progression of his illness.  During these progressions, his symptoms seem to multiply exponentially, and the symptoms do resemble those of a stroke.  And even though an MRI shows no sign of a stroke, many doctor's will simply label what they are seeing as a stroke because they don't know what it is that they are looking at.  It only took 10 years for us to find a neurologist who had any experience with this condition.  Within minutes of examining Dale, the doctor informed us that he had never had a stroke, but that he knew what was wrong with him.  We finally had a diagnosis.
We don't know what caused Dale's ataxia.  We do know that the long delay in his diagnosis probably put him in the wheel chair.  Because it took so long to get an accurate diagnosis, he did not receive any real therapy.  This caused his muscles to atrophy, and they cannot be brought back.    And while no one knows for sure, it is thought that his SCA may be the result of chemical exposure when he was stationed in Saudi Arabia during the first Gulf War.  Unfortunately, we will probably never know the true cause.

The physical effects of this disease are devastating to a man who worked in physical capacities all of his life.  Dale spent 14 years in the army, defending his country.  He worked as a mechanic and in construction.  The body he had depended on for his livelihood suddenly betrayed him.  SCA came on slowly around the time Dale turned 40 years old.  It began with a loss of feeling in his feet.  Then, he began to stumble when walking, leading to an inability to tell if he had actually picked his feet up from the ground when taking a step.  Eventually, he began to lose muscle control in his arms and hands.

SCA effects coordination of all muscles.  He is beginning to lose control of swallowing and chokes frequently.  Chewing is difficult, and he will bite his tongue and the inside of his mouth with alarming regularity.  Eventually, he will lose control of the muscles controlling his breathing.  Dale is still able to control large muscle movements.  He can stand while holding onto things; he can wash dishes and do laundry.  Writing is becoming impossible as it involves fine muscle control.  His speech can be very difficult to understand, and it becomes worse when he is fatigued.  Dale has horrible muscle spasms and tremors, causing severe pain.

There are also psychological effects associated with the condition as well.  Dale suffers from periodic bouts of depression, some caused by the physical effects of the condition, and others brought on by the thought of everything that he has lost.  The disease has caused him to lose a great deal of impulse control.  He can have severe mood swings.  And the thing that is hardest for all of us to deal with is his loss of the ability to control his temper.  He doesn't get violent, however, things that would be a mild annoyance for you and me can cause him to have temper tantrums, which is the best way I can describe it.

Watching him go through this is heartbreaking for me.  Dale is no longer the man that I married, but we all grow and change, and it doesn't take away the love that I have for my husband.  We have learned to adapt.  We still take care of each other.  We are still there for one another in the ways that truly matter.  When he is down, I try to cheer him up, and he does the same for me.  The hardest thing of all is knowing that there is no cure for this devastating condition.  Dale will continue to get worse, and there will come a day when I am no longer able to care for him physically, and I will have to make the decision to place him in a nursing facility.

But until that day comes, we will continue to take care of each other.  We will continue to honor our wedding vows "for better or worse; in sickness and in health".  And while I say that he is no longer the man I married, he is still the man that I love.  He is still the man that I vowed to spend the rest of my life with.  He is still the father of my children.  And he is still my hero.