Caregivers for Progressive Supranuclear Palsy
Progressive Supranuclea Palsy is not well known or researched but this is a devastating disease. It affects balance, swallowing, and sight to mention a few things.
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26 days ago
My father will be 80 this year and was diagnosed with Parkinson's @ first. After a month in the hospital for a bowel obstruction, then another month in a rehab facility to strengthen him to return home his next appointment with his Neurologist brought the PSP diagnosis....My brother and I have been handling much of the financial and medical planning for his care. We have tried desperately to help my mother understand the disease so she can better cope with caring for him (medical articles, support group info., ect). We have daily caregivers that come in for 3 hrs to take some of the burden off her. We could increase it to 3.5 hrs, but for some reason she refuses. Despite our efforts she still treats him like he's just being stubborn and won't listen to her and most of the time yells at him when he's trying to get to the bathroom, etc. because he's not going the right direction, or goes past his chair, or can't decide if he needs to go to the bathroom. At the rehab, they showed her that he needs 100% verbal prompts to get around. I know she does this because we installed a wireless camera in their home to monitor his care/caregivers. I'm struggling with how to make her treat him with the dignity & respect she would want for herself if the roles were reversed and sadly, find myself becoming very angry with her for her treatment of him. She basically refuses to attend the local/on-line support groups for caregivers that I found. We've mentioned to have some of his friends come over to watch him so she can go out. Nothing......yet complains she can't go anywhere?! My brother and I have spoken with her several times about trying to remain calm and asked her if she read any of the emails we'd sent her about his condition and she always replies that she has & understands...."but, he does this, or he does that". I always reinforce that it's not him, it's the PSP and he's not able to respond the way he used to. Feels like anything we do goes unappreciated or ignored........any recommendations to help her care for him in a more compassionate way?
about 1 month ago
My husband was diagnosed w PSP about 2 years ago although I believe he has had it 3. He was doing ok, speech, walking, etc. until a week ago. He has lost much if his speech & his walking is labored very quickly. Why would there be such a dramatic change is such a short time? What can we do? He falls often with his walker but refuses to use the wheelchair.
Judy Jarnutowski said...
about 1 month ago
Hi! My name is Judy. My husband, Joe, was diagnosed with PSP probably 6 years ago. Prior to that, back in 2006, I noticed a change in his behavior-slowness in cognitive, not processing, etc. We tested for all kinds of things including Parkinson's. He was put on drug testing to see if anything helped. Unfortunately, no. As time progressed, it was brought to my attention to test him for Lymes which we did and proved positive. We treated him for 4 years and when the Lymes' symptoms, seemed to fade, there were still other neurological issues that still existed. I brought him to Brigham and Women's in Boston for further testing and he was diagnosed with MSA-Multple System Atrophy which is a sub something of Parkinson's. (A typcial) however, we were told that it wasn't known for sure and until the disease progressed further, there was no real way of knowing exactly what type of ATypical Parkinsonism it is. As time passed, Joe's eye sight was getting worse. He was seeing 8 images. Because of his progressive lack of vision,our doctor, (Dr. Albert Hung) diagosed him with PSP. He was having frequent falls. He also couldn't swim anymore-couldn't keep his body above water. (We have a summer home on the lake and this was a big issue). Last October, Joe fell down a flight of stairs, cut his head open causing a brain bleed, broke his clavical and two ribs. He has recovered from that (with the help of in home nursing and rehabilitation) for many months. I would love to know and have a conversation with someone that is experiencing what I am. I know that my husband would feel comfort in relating with someone that is going through what he is. We used to be "unbeatable" in our relationship with one another but with this disease, I am the only one that speaks of feelings. I feel so alone and would really appreciate knowing someone that is going through what I am. I know my husband would as well. I hope this reaches out to someone that can identify with what we are going through ad possibly help us. Keeping my fingers crossed.. Judy Jarnutowski
2 months ago
I live in southern Indiana and my mom got diagnosed with PSP about 6 months ago. This is all very new and very overwhelming. For the most part she is still doing pretty good, walking with a cane starting to have falls couple times a week, and she can't look down or handle the sunlight, she does a lot of coughing when she eats( that's been going on for a couple years), has trouble putting her thoughts and words together or finding the right word. She's 68 living with my dad and I'm her daughter and been helping out a lot. I guess I'm not sure what to expect, how long she's had this. Should I push her to do things, cause she has no interest in anything anymore, so while she still can do, do I try to make her do things, or do I not push her. I know she let this diagnosis get the best of her,. I want to see the fight come back in my mom cause she has always been a fighter. Any words of wisdom anyone can give me would be greatly appreciated.
5 months ago
We live in longmont co. Looking for home care for my father who has progressive super nucular paulsy.we need someone who can dress transfer from bed to wheel chair, brush teeth, transfer from wheel chair to toilet, spoon feed and shower twice a week. He has medicare and medicaid coverage.
8 months ago
My Mom was diagnosed with PSP about 4 years ago but she was having symptoms and undiagnosed for a few years. We all knew that there was something but no one could tell us what. We didn't give up and finally a neurologist diagnosed her. She is suddenly progressing so fast. She doesn't walk anymore, chocks sometimes, withdrawn,Malays wants to sleep, has very bad attacks we are assuming anxiety because no one knows, trembling severely and sweats. On top of that she needed a hip replacement years ago and they will not put her under so she is in severe pain constantly. Nothing helps that pain and her leg is permantly bent. I don't know how to help her anymore. My heart is breaking for her
10 months ago
Hi, I came into the role of caregiver for my mother-in-law because I was already a stay at home dad. We think she is about 5 years into the disease based on looking back at her changing behaviors. Currently she can still walk using a rolling walker but spends most of her time in bed or a recliner. She falls several times a day but won't start using a motorized wheelchair because she is afraid of what it means. Her leg bounces and twitches all the time. Her vision is almost completely gone. Her hands have lost all dexterity. She says she wishes she was dead and all I can reply is "I know." As her son-in-law, she refuses my help in the shower. My wife is emotionally unable to help. My wife's sister was helping for a while but has resumed her drug addiction with synthetic marijuana. I know it is time to get outside help. I'm afraid my kids are being traumatized. My wife has shut down emotionally and I'm not sure our marriage will survive this. It takes all of my strength to put on a smile in the morning and try to keep going.
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