“I am a living candle. I am consumed that you may learn. New things will be seen in the light of my suffering’.
A quote from the autobiography of Leonard L., a patient of Dr. Oliver Sacks.
I’ve often said that I don’t suffer with Parkinson’s Disease and all the accompanying non-motor symptoms, including depression. I live with this disease, deal with it on a daily basis, function the best I can with it, and live my life to the fullest because Parkinson’s Disease does not define who I am as a person. Being known as a person with P.D. doesn’t bother me in the least bit because I don’t shy away from the truth.
The Leonard L. quote has stayed with me through the years since my diagnosis and has made me feel like sharing something personal that I often wish wasn’t there, but it is part of what I deal with on a more consistent basis lately. My medication regimen has been, and is allowing me to function very well, and for that I feel extremely blessed. The issue that I deal with as a side effect of several of the medications I take are vivid dreams, that for me are otherwise known as nightmares.
Dealing with insomnia is one thing, and on top of that, dealing with not wanting to sleep because the nightmares come much too soon makes for some long days after the even longer nights. Feelings of being attacked with no ability to defend myself leaves me to wake myself up from the screams and flailing to fend off the would-be attackers, oftentimes finding myself on the floor. Seeing things that are not there and being frozen with fear that I will encounter someone in the house if I get up to check, are just a couple examples of what I don’t know what to expect. Not knowing what comes next once I get to the point of falling asleep is a difficult challenge anymore.
Some would say that my medications need adjusting or maybe even changed. They could be, but the side effects from Parkinson’s Disease medications are common for many of us. Many have said that the side effects are sometimes worse than the symptomatic relief from the medications. Dyskinesias, the rhythmic movement that so many people associate Michael J. Fox with is something that comes from several years of constant use of some prescriptions. We never know what will start as a side effect, when it will start, and the extent of these which makes fear of the future very real for all of us living with and taking medications for Parkinson’s Disease.
So, I’ve shared in this post much more than I’ve ever shared when it comes to something very personal, and real, and with which I feel that I suffer from on a consistent basis anymore. I will stress that I have no issues when it comes to having the best results from the most effective medication regimen over the past few years. I’m just having to deal with some issues that make life difficult on some days. Perhaps sharing will allow others to know that they’re not the only ones dealing with some of these issues.
“I am a living candle. I am consumed that you may learn. New things will be seen in the light of my suffering”. Leonard L.
(This was quoted in the book, “Awakenings” and after some research and getting in contact with an assistant of Dr. Sacks, I found out that the autobiography was never published. The only credit that I can properly give is that this is quoted in the book.)