An article on Deep Brain Stimulation, by Dan Stark, recently came across my internet screen several days ago. I bookmarked it so I’d get back to it. It kept nagging at me to do just that and last night it kicked me into submission by means of a comment I received over it.
I think the reason I saved it and set it aside is because of the message it sends:
DBS, or Deep Brain Stimulation, is a god-send and although it does buy you time, as Dan Stark states in his article referred to above, eventually it fails.
It’s easy to forget this little machine, implanted into our chest and snuggled up near and dear to our heart, will some day give us up. It’s hard to think about our deep brain stimulator not working one day, leaving us to find our disease has progressed without us being aware of it happening. Or so it seems. What is easy to forget is that while we go walking without any aids, join our dance and boxing classes, eat without assistance, the little monster continues his deviant work of progressing the disease while we choose to think we’re going along on our journey just fine.
And we really can be – just ‘fine’.
But what this article reminded me, is that I need to remember to be realistic. While my unit may not give me up in the same way as it did to Dan Stark, I need to keep in mind that it could. You might ask why I’d want to think that way. Because I don’t want to forget this could be my last (for whatever reason) good day on my journey with Parkinson’s disease. If that is the case – then I want to live my best.
Any of us who have experienced Parkinson’s Disease for any amount of time know how it fluctuates and changes from day to day, moment to moment. We can be sitting in front of the TV one moment, blissfully captivated with our favorite re-run of The Brady Bunch and settled in with our popcorn and drinks and POW!!! The cramping features of dystonia hit you and the popcorn is spilled as you try to work out the pain. Any part of PD can hit at any time. It can be your constant, nagging companion or it can come and go.
Yes, even with Deep Brain Stimulation, there can be bad moments, bad days. Don’t be misled on the good days that flow together in what seems like the yesterdays of feeling good, that those good days are here to stay. But!!!! Do enjoy them. Cherish them. But don’t be duped and set yourself up for major disappointment.
As a commenter said on Facebook, in reference to Stark’s article, “Don’t be a “victim”.
“DBS was never described, designed, or promoted to be a solution or cure, but rather, another treatment for an otherwise incurable, progressive disease. You had to have known that when you chose to undergo the procedure.
“You have been gifted with additional years of reduced symptoms that you would have otherwise not gotten without health insurance or the procedure.
Be thankful for the additional years of reduced symptoms, rather than a victim of some notion of medical mistreatment.”
Don’t dwell on the what could be but what is – now. Be thankful for each new day because each new day, whatever it brings, will bring something to be thankful for.