Parkinson`s Disease/end stage parkinsins
My mother has suffered from Parkinsons for many years and is now 87. We have been told that she is at "end stage" Parkinsons and she is clearly declining. What can we expect to happen? Her mind is still very sharp but she cannot speak - she lost that ability years ago which may or may not be Parkinsons related. She can peck out words and thoughts on a keyboard, she laughs at approproiate times (and cries as well) but has much trouble swallowing now and can only "eat" liquids and soft, meltable foods like ice cream. Will her organs begin to fail? What is likely going to be her cause of death? Will she suffer pain? So far this has not been a big issue. She now needs help dressing, bathing, getting in and out of bed, toiletry etc. We just want to know what will be happening over this last phase of her life so that we can all deal with it appopriately. Thank you for your response.
Hi Alan and thanks for writing,
Aside from the usual stages of death, I will do my best to compile PD-specific information for you. This may be more than you were looking for – if so, you might just want to read the last two paragraphs.
Although gait abnormalities in Parkinson's disease are very common, the presenting symptoms are frequently resting tremor, rigidity, bradykinesia, and postural instability. Older patients have a syndrome of predominantly axial rigidity and gait disorders. The tremor of Parkinson's disease is a rest tremor. Initially, the tremor is usually one-sided. As the disease progresses, the tremor becomes bilateral and increases in severity and frequency. Although the classical tremor of Parkinson's disease is a rest tremor, over time an action tremor may develop. Furthermore, it may increase in severity with levodopa. The major complaint is a writing tremor (which may also present as micrographia). This type of tremor, may respond with propranolol.
Rigidity is defined as a resistance (increased muscle tone) to passive movement. Typical Parkinsonian rigidity is intermittent in nature, thus its name "cogwheel rigidity." While the rigidity is often bilateral, there is usually one predominant side. In addition to cogwheel rigidity, there is also generalized rigidity affecting mostly the neck, trunk and the knees leading to a stooped posture.
Bradykinesia is defined as a general slowness of movement. This will often be seen as hypomimia, which is decreased facial expression and reduced blink frequency (commonly called called masked facies). The gait will also be slowed, this is best observed by having the person get up from a chair and walk. It can also be tested by the ability of the person to initiate and sustain rapid pronation-supination of the hand on the thigh. Once the bradykinesia worsens, it can become one of the most disabling symptoms of Parkinson's Disease especially when combined with postural instability. The patient's movements will become extremely slow.
The unsteadiness with walking and turning, as well as occasional falls in Parkinson's Disease patients is due in part to the postural instability. A patient suffering from mildly impaired postural mechanisms will recover by stepping back one or two paces after being nudged at the sternum. After a sternal nudge, a more disabled patient will attempt to recover by stepping backwards, however they will continue in this fashion until they either fall or hit something (called retropulsion). An extremely disabled patient, being extremely rigid, may fall back straight as a board, without any attempt at recovery. When the patient reaches end-stage, they are not able to stand without assistance.
The combination of disabilities leading to a variation in gait is festination. Festination is progressively shortened, accelerated steps. It is produced by the combination of the flexion of the hips and knees and forward stoop, the shuffling steps, and an advancing centre of gravity (leaning forward). Usually because the person cannot regain their balance, this gait will result in a fall. Festination will only occur in the latter stages of the disease, and can usually be corrected with the help of a walking aid.
There is an associated slowing down of the person's mental function as the disease progresses. By end-stage of the disease some 50% of patients suffer from significant dementia.
The incidence of depression in Parkinson's patients is high. It is not clearly related to disease-severity or the dementia. Another frequent complaint, which may be associated with depression, is poor night-time sleep. Low doses of amitriptyline (tricyclic anti-depressant) may help to relieve both the symptoms associated with depression, and the insomnia.
Constipation is a frequent symptom, which may be worsened with anticholinergic treatment. It can be easily treated with diet control and/or enemas. Dysphagia can be caused by pahryngeal incoordination. It is caused by a delay in the relaxation of the inferior pharyngeal constrictor. Neurogenic bladder may be a complication of late stage patients, who often complain of urgency and frequency. This problem may be worsened with levodopa treatment. Other causes must be excluded however. Drooling may be the result of reduced swallowing frequency. Orthostatic hypotension is often seen, although it is rarely symptomatic in the classical disease. It is worsened with levodopa and dopamine agonists. Severe sweating may be an intermitent problem. It responds well to propranolol. A frequent complaint and finding is leg edema. It is usually related to the bradykinesia.
• 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 & 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 ,
and eventually Increased weakness, fatigue, drowsiness.
I hope this helps, all the best,