At the end of the month, I’ll have my second Deep Brain Stimulation (DBS) surgery. DBS is a surgical procedure used to treat a variety of disabling neurological symptoms—most commonly debilitating symptoms of Parkinson’s disease such as tremor, rigidity, stiffness, slowed movement, and walking problems.
In 2013, I had the surgery to stop the tremor on my left side. Since then, tremor has developed on my other side. I hope that the second surgery quiets the tremor as it did so successfully the first time.
When I discussed DBS with my movement disorder specialist, I thought to myself “No, this is not my mother’s PD.” My mom passed away in 2015 at the age of 87. She had Parkinson’s disease.
I remember that mom’s PD tremor was mostly one-sided. I figured I’d be the same. But now, as the years go by, I think that my tremor is more pronounced, and possibly a little stronger than her tremor.
I realize that every person with Parkinson’s disease displays PD differently. The elements of PD can be as varied as a fashion designer’s collection. Every outfit is different.
When you’re assigned your custom-fitted PD outfit, there are the obvious basics that you may or may not have. Tremor, slowness of gait, and soft voice in the PD world are like sleeves, collars, and zippers in the fashion industry.
These symptoms are accompanied by silent internal symptoms such as bladder and swallowing issues that crop up as the years go by. Like fancy trim added to accentuate a vintage haute couture piece, silent symptoms can often change the look of your PD outfit.
When I think of how I’d characterize mom’s symptoms over 30 years, it would be in this chronology:
- slight tremor in one hand
- slowness in movement
- soft voice
- difficulty walking
- some dyskinesia (possibly due to medication)
- expressionless gaze
- wheelchair bound
- bladder infections
- increased saliva
- trouble swallowing
- trouble speaking*^
- decreased appetite
- Loss of weight (45 pounds)
- periods of psychosis**
- lung infections
* My sister Merry Ryser Graham, who was my mom’s incredible caretaker for many years noted “Mom could speak coherently and her sentences made sense. However mom’s ability to speak a sentence quickly declined. A sentence could take 4 minutes. She always knew what she wanted to say and appreciated me finishing a sentence.”
** Merry also said “Mom had hallucinations when medicine was too much. She would see bugs and ants everywhere. Other PD caretakers I’ve met have told me that the same ants are seen by their patients!”
^ My brother Scott Ryser remembers “Mom was unable to say the words that were in her thoughts. She would often say ‘Can’t find words,’ as if the connection between thinking and verbal ability had been severed.”
Since I am only into this disease for nine years, my list isn’t as long as mom’s. She didn’t have preventative treatment choices for her symptoms as I do with the (MAO-B) inhibitor Azilect and DBS. Although my list is different, it could change at any time.
- tremor on left side
- tremor on right side
PD doesn’t do us favors, but I hope that my next PD accessory coordinates with my style!