I’ve been avoiding the taboo subject of dying with Parkinson’s. However, a blog reader wrote me about her grandfather with advanced Parkinson’s and said, “No one has explained where he is at in his disease, what the next stage to be looking for, or how far he is from the last stage.”
I felt compelled to do some research. This is what I’ve discovered so far:
· Severely disabled due to the tremor, rigidity and bradykinesia
· Still mobile and able to act independently some times
· Fluctuations, if present, are more severe and may at times be completely disabling
· Dyskinesias, induced from levodopa therapy, may be prominent (including postural defects)
· With advanced disease, some patients will complain of vague paresthesias and discomfort in the lower trunk, low back, and lower limbs. These are often secondary to rigidity and/or severe tremor. Better control of the parkinsonism through medication adjustments may improve these symptoms.
· Maximum degree of previous disabilities, including severe postural defects
· Independent mobility is impossible, usually bed-ridden
· Towards the end of the disease there is frequently a slow decrease in the volume of speech, accompanied by increasing dysarthria. Unrelated to the intellectual impairment commonly found in Parkinson's disease, there is the development of word-finding difficulty. Unfortunately, there is very little improvement with therapy.
In itself, Parkinson's is not a fatal condition. However, the end-stage of the disease can lead to pneumonia, choking, severe depression, and death. Sadly, many PD patients spend their last years confined to a Geri-Chair (a medical version of a recliner) with functions similar to an infant. They lose the ability to walk, to talk, to care for themselves, urinary and bowel control and even to turn themselves over in bed.
End Stage may include one, or a combination of the following:
· Progressive decline despite medical therapies
· Multiple hospitalizations/frequent ER visits (often due to falls)
· Agitation that is more difficult to control
· Diminished functional status
· Decreased appetite
· Progressive weight loss
· Increasing dyspnea (trouble breathing)
· Dysphagia (trouble swallowing)
· Recurrent infections
· Severe decline in mental status
· Eventually increased weakness, fatigue, drowsiness