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End Stages Parkinson's
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We are fighting a losing battle with Parkinson's Disease, and somehow I have to help my husband face the inevitable. I was horrified to my bones to read the following list, but this is what the future holds, no matter our emotional or intellectual reaction (list thanks to allexperts.com):

Stage IV
1. Patient severely disabled due to the tremor, rigidity and bradykinesia (decreased movement).

2. Patient still mobile and able to act independently sometimes.

3. Fluctuations of "on" and "off" times are more severe and may at times be completely disabling.

4. Patient experiences dyskinesias (impaired ability to control movement), induced from levodopa therapy, may be prominent (including postural defects--hunched over.)

5. With advanced disease, some patients will complain of vague paresthesias (tingling, pain, itching) 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.

Stage V

1. Patient experiences maximum degree of previous disabilities, including severe postural defects.

2. Patient's independent mobility is impossible, usually bed-ridden.

3. Towards the end of the disease there is frequently a slow decrease in the volume of speech, accompanied by increasing dysarthria (inability to speak). 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.

4. 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.

5. 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 and progressive weight loss
--Increasing dyspnea (trouble breathing)
--Dysphagia (trouble swallowing)
--Recurrent infections
--Severe decline in mental status, and eventually
--Increased weakness, fatigue, drowsiness

Husband is clearly Stage IV. I don't know how we're going to face such a terrible decline, but we'll just have to take it one day at a time. He's already waking me up every 2-3 hours for help rolling over or sitting up or going to the bathroom. We keep trying to adjust the medications, but nothing seems to help. I get the idea that, in the final years, nothing can make a difference.

What an awful way to go. Please just let me drop dead of a sudden.

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