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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13 days 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...
23 days 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
about 1 month 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.
4 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.
7 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
9 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.
9 months ago
My domestic partner was diagnosed with this horrible condition about 4 years ago It was worse in the beginning but Now it's progressive and before it seemed as if he had Parkinson's or hydrocephalus but as time went we learned progressive super nuclear palsy is the cause. I'm 33 and he is 72 I am his only caregiver and I try so hard to be take care of him, he still insists that he is independent enough to stay alone but as the time goes he is getting to where he can't walk to well anymore he told me the other day he thinks he's just gonna wake up paralyzed one day . It's very hard watching someone who just 4 yrs ago could climb mountains Deminish so fast and be so helpless. It's emotionally draining on both of us. I pray that I get help with him I feel so helpless and I know it's time to have a medical professional step in and care for him but I don't know what to do can anyone help me with some options or what his options might be he is a retired federal employee ? Helpless in seattle ????
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