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CarolSinger

Will the situation ever stabilize?

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Hi all, 

I guess I am just frustrated. My sister and I have been dealing with my mother's decline for the past 10 months and it has been intense. It's as though she can never catch a break and there's always a new curve ball being thrown our way. We are in a constant cycle of  dealing with inaccuracies from the pharmacy, fighting with insurance to continue PT/OT, to then have changes in her meds cause bizarre side effects. I feel like we are always trying to make the decision whether or not to go to the ER. Every time we end up in the hospital we come back with less answers and more test results that have no conclusion. Each time she is there it only just make my mom feel disoriented and sad. I can't believe this is her new normal.

Any advice would be appreciated here.

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You don’t tell us how long your Mother has been diagnosed or what stage of Parkinson’s she is in.  I am so sorry you and your Mother are dealing with these difficult and troubling issues.  Does she have a Movement Disorder Specialist who is overseeing her care?  If not, that would be my recommendation.  A Movement Disorder Specialist that you have confidence in can be very helpful in helping you through difficult situations.  Sometimes an ER visit is warranted, but in my experience the ER doctors know little about Parkinson’s and the visit is less than helpful.  

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Sorry I had not read your first post where you gave more information about your mother before I posted  my reply.  After reading your first post, my recommendation is the same—find a Movement Disorder Specialist, a neurologist who further specializes in movement disorders including Parkinson’s.  Your mother might have one of the Parkinsonisms which a Movement Disorder Specialist would recognize. 

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She has a MDS. They keep going back and forth with a diagnosis Parkinson’s disease/Parkinsonism + dementia or some atypical Parkinsonism. My mother has no movement issues (besides the dropped foot due to being over medicated back in September). They always say her motor function looks good, and it does. It’s so frustrating. 

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Big thing to watch is sense of smell decline.If she responds to sinemet well you can bet on PD and not the rare pd plus.My sense of smell disapperead about a year before physical problems. 

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