There are many questions that are awkward to ask and just as difficult to answer. While some people see life in platitudes, others find hope in being pragmatic and proactive. Every patient deserves the best answer and to know the arguments out there.
So what is the answer to the question, “Will I die of Parkinson’s Disease?”
If you give the stock answer that you read at almost every PD and medical site, no one dies of Parkinson’s Disease; they die of other causes. They die with Parkinson’s Disease but not from it.
The problem that many people might have with this response is that if it weren’t for the Parkinson’s disease, most of these deaths would not have occurred. We know that eventually we’re all going to cede life to entropy but both the quality and quantity of life might have been improved and prolonged had it not been for the presence of PD.
Perhaps the problem with the common medical answer is a semantic issue which does not take the “people” factor into consideration.
The leading cause of death for Parkinson’s sufferers is Pneumonia and similar respiratory ailments. The argument is that if the patients did not have PD, in all likelihood they would not have developed this particular pneumonia because it is caused by the disease symptoms. The Parkinson’s patient inhales small bits of food, saliva or mucous; swallowing difficulties and choking are symptomatic of PD and they get worse as the disease progresses. The result develops into Aspiration Pneumonia and the patient often dies.
So people die as an direct result of having Parkinson’s Disease but the direct cause on the death certificate is Pneumonia. You won’t find stats on PD deaths.
Because PD is predominantly a disease which appears when the patient is 65 years or older, the life expectancy is almost what it would have been without the disease. The problem is twofold: quality of life and the fact that the end stages are neither pleasant nor pretty to describe.
Many elderly people die as a result of the complications of a fall. Falling is the 2nd leading cause of PD patient death. Because of the balance and physical stability problems, the freezing and stiffness characteristic of Parkinson’s, the risk of falling is considerably higher than an average cross section of older persons. Remember that not all PD sufferers are elderly, although they are in the majority.
Just as there is dementia in Alzheimer’s, so there can be in Parkinson’s. This is not a pretty dementia, it is frightening to comprehend. Another problem is that in PD it is coupled with a myriad of other neuromotor problems including possible loss of intellectual capabilities. While this is not death in can be a form of living death for the patient and for the family.
You might think that suicide would be a leading cause of death among Parkinson’s patients but statistically it is not. Although depression is a serious symptom in PD and is thought by some not only to be a precursor but possibly a cause, it differs from mainstream depression and has a significantly lower suicide rate. There may be unexplored reasons for this detail and is another open door for research.
There is often the feeling among patients of diseases for which there is no cure that no matter what they do, it is still a step toward death, we are reminded that what is being done is a step toward living as normally as possible for as long as possible.
The good news is that as more is known about the origins of the disease, when research can be better funded rather than restricted or cut who knows what will be on the horizon for PD patients within the next few years. So it was not surprising that many neuromotor disease, disorder and accident patients felt as if they had received an second death sentence from their government in August of 2001 and then again and again. And it is also not surprising that although there may be little money to direct for reasearch, there will be cause for hope after January 2009 when the door to stem cell research is reopened.
The other good news is that there is technology which is of dramatic symptomatic benefit now. While it may be out of financial reach for many, this may change as the technology becomes more established, as alternative therapies prove effective and as standards are set and insurance companies realize that healthier patients are less expensive than near dying ones.
For Parkinson’s patients, the best way to live is to plan the PD journey to get the best quality of life possible through medication, exercise, supplements, a variety of therapies, family support and hope.