People with Parkinson’s Disease carry our disease on our sleeve, sort of speak. Some of us shake as our tremors occur in our extremities and even in our face and head. Our condition is such a visual one that is so difficult to control the obvious effects even with our meds. Also many of us stumble and lose our balance as we walk. For some PD patients, the lack of coordination and balance leads to us stumbling, tripping and falling. All of these are very visual symptoms that so often cannot be controlled.
Since undergoing my deep brain stimulation procedure this past spring, I am delighted that my tremors have significantly diminished especially in my extremities. In addition, my balance has vastly improved. I still have issues with coordination especially when I am tired, but I seem to be able to catch myself before tumbling or falling. My bones are grateful!
Yet with all these exterior issues with Parkinson’s, it is the interior ones that are equally, if not more, challenging. I am talking about the fatigue, the anxiousness, the mood swings, the sleep disturbances, the hallucinations, the low voice, the lack of smell, etc. etc. These are the hidden signs and symptoms that effect each person with Parkinson’s differently. Not all of us will have all of these issues, but most of us will experience the majority of them at some point during the duration of our disease.
The good news is that they are not visible to the world. The bad news is that they are not visible to the world. As a result, we do not exhibit what is really going on inside. So when we appear “normal” because we are not shaking or stumbling, we are not so normal internally. My neurosurgeon at Duke brought this topic up when we were discussing the ramifications of having dbs. He reminded me that we are not curing Parkinson’s, we are simply controlling some of the outward manifestations of the disease. He noted that I will still have fatigue, emotional issues, anxiety, etc., but at least the externally things calm down and that is life changing.
I wish the outside appearance mattered less, but I am glad to have a reduction of the shakes. As far as what is on the inside, I will continue to work on treating the symptoms like mood swings and anxiety related to Parkinson’s and keep those related to pure vanity in check.
