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Monday, May 2, 2016
When do you know you are in the final stage?
My mom has been diagnosed with Parkinson for one and a half years. Every day has tremendous changes. Prior to this she walked every day, cooked, and talked on the phone. She was even able to eat dinner with me. Since that day, we have been to the emergency room numerous times, most of the time they were not needed, we just did not understand the disease. She has been to many doctors’ appointments.
With her current condition she cannot eat, walk, stand, use bathroom and cannot communicate. She has to be spoon feed for every meal. She chokes on almost everything with any texture. I lift her out of her chair and either place her in the wheelchair or encourage her to move down the hall to the bathroom. She does not know if she has to go, a lot of trips to the bathroom nothing happens, but we still go as I think it’s good to get up.
She has psychosis and dementia. We have a dog, but she does not know where he came from. She also has bursts of speech. Mostly statements like, ‘this is my house’, ‘who’s dog is that’, ‘you’re my daughter.’ Some make full sense, others like ‘your baby is dead,’ freaks me out a bit. I look forward to every doctor appointment hoping that something will change for the good.
Yesterday a new thing happened, drooling. We had to change her shirt 5 times and she has never drooled, always kept her mouth quite closed. I am not sure what comes next. We have more doctors’ appointments within the next two weeks.
She will be 78 in May, I just don’t know what is going to happen next, every day something new happens. How long can a person live like this? She is about 95 pounds, which seems small but has gained 10 pounds in the last few months, as I realized she needs more food.
Can you help me understand how much or little time I have left with my mom. I love her very much, and this disease has taken everything from her. If you have any encouragement please let me know and please help me understand what happens next.
Parkinson's disease (PD) can be a frustrating disease given that there is currently no cure, and because many aspects of the disease have limited response to current available medication and treatment.
Further, there are several other syndromes (atypical parkinsonian syndromes) that can cause symptoms similar to PD, but with even less response to parkinsonian medications and the only treatment available is supportive.
Overall, it is difficult to determine what to expect in the future for anyone with PD or any of the atypical parkinsonian syndromes because each person is affected differently and with a different rate of decline.
Generally speaking, the atypical syndromes do tend to progress much faster than PD. As all of these diseases progress, there is more trouble with ambulation and dexterity. This often requires use of walking assistance devices, wheelchairs, and a lot of help from other people. Daily exercise is felt to lessen the rate of decline, and is commonly encouraged.
Early dementia and psychosis can be more commonly associated with the atypical syndromes, but is seen in the more advanced stages of PD as well. This can sometimes be worsened by certain medications, and this needs to be assessed by a doctor.
In addition, there are a few medications that can potentially lessen some of the cognitive problems and these can be tried if felt to be appropriate by a patient's doctor. People suffering from any form of parkinsonism can develop trouble swallowing. A course of speech therapy with swallow evaluation may help with regard to diet modification, and also in providing exercises to try to lessen complication.
A few medications can be tried for excessive drooling, but these can have higher risk of worsening confusion. Treatment of excessive drooling can sometimes be accomplished by botulinum toxin therapy as well.
Your mother has numerous symptoms at this time, and I strongly suggest you discuss your mother's condition further with her doctors.
Punit Agrawal, DO
Assistant Professor of Neurology
College of Medicine
The Ohio State University