I need advice. My mother-in-law is 89 and has had Parkinsons disease for probably the past 10 years. It has affected every part of her life. She has a lot of Parkinsons medication that she takes everyday. She lives in a very good assisted living home with a qualified, competent and caring staff. She has to use a walker with assistance and at times uses a wheelchair with someone pushing it because her arms are weak. Her balance is quite poor and she has had and continues to have, a lot of falls over the years. And because her fingers have been tightly clenched for years now, she has to be fed since she has so much trouble picking things up. Just yesterday she had Botox shots to help open her fingers and she has been getting physical therapy for her hands.
What I need advice on is trying to figure out these episodes she has been having. It completely shuts her down for minutes or for hours that can be as long as 5 or 6 hours. It is like a light switch. She can be in the middle of a conversation or eating and then she stops doing what she is doing, and just stares. If she is in the middle of chewing food it just sits there in her mouth, she can’t even swallow it. The food has to be taken out of her mouth. During these episodes, she cannot talk, or communicate with the people around her, or move. A new symptom to develop in the past two months has been she will be making chewing movements and there is no food in her mouth. These chewing movements can be when she is sleeping, alert and awake. She will claim to have gum in her mouth when there is nothing there. I understand her age and the Parkinson’s has robbed her of a lot of her memory of people and places. But sometimes she substitutes words that make no sense in context of what we were talking about. At times she is as sharp as a tack, with her old sense of humor, and then at other times she talks jibberish. .She has been on an antibiotic for over a year for a urinary track infection that never went away. It has only been this last week where her test came back negative. I realize that this infection could have caused problems with all of her movements like chewing and swallowing, walking, etc. She never remembers these episodes of complete incapacitation. Sometimes she can feel one coming on and the words she will use for it is that she is feeling “punk”. But after it hits she can’t communicate at all. These episodes usually happen at least once a day.
Recently she had a brain study done at a prestigious hospital. I was with her the 4 days we were at the hospital. She had a camera on her 24/7 and she had electrodes on her scalp. She had at least 4 of these episodes when we were there. They were testing to see if these episodes she has been experiencing are seizures. The EEG results show they are not.
Here is where I need advice. I want to know if anyone else has had experience with these episodes. Her Parkinsons doc has said these are unique for her and unrelated to Parkinsons. Can anyone give me information on what this can be, and how it can be treated? Is this happening to anyone else?
Parkinson's medications eventually cause tardive dyskinesia (which I have in advanced form) so that can cause chewing or puckering motions of the lips. It is treatable. Dysphasia causing difficulty swallowing is often part of Parkinson's. All of these symptoms are treatable. See a trained movement disorders specialist for follow up.
my dad is 89 and has PSP which is a parkinsons plus disease. He has had all the same symptoms and difficulties your mother has, his latest being the chewing. He has always been a slow eater, but will chew applesauce and pudding for long periods of time. I need to stay close when he is eating but can not sit with him for very long and watch him eat as its difficult to bear. He has never taken any parkinson meds and only takes one prescription for cholesterol.. He did however take antibiotics for years for chronic UTI infections, and has had at least 3 major infections that caused hospitalization. I am very sad and frustrated for him as there is little that makes him feel normal except for eating. He had 3 great weeks and then slipped into a sort of catatonia yesterday on and off and became rude and irritated,, neither symptom has ever surfaced before so I am at a loss as to what to do about it. We have hospice starting to come to his home now and I take care of him with some help the rest of the time. No one seems to know if there is anything that can help,, or if we just sit and wait...
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