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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about 1 month 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.
2 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 ????
Eluned W. said...
3 months ago
My husband has had this for possibly 4 or more years and lives at home. It's his wish to stay at home and as he has anxiety and worries when I'm gone for several hours [always with a sitter with him] I'm wondering how I can cope with my own sleep [he likes me near him] though he has started coughing more now. We are blessed with a caring family and do get visits often, but am beginning to get nervous about how I should handle things ongoing for my own health [mental and emotional and physical]
3 months ago
My Dad was diagnosed with Progressive Supra-nuclear Palsy in 2011.. I am his caregiver and Daughter. I am the youngest out of 5 siblings and do not have any support from my family. My brother lives next door and never even comes to check in on him. For this I am extremely resentful. I am emotionally and physically exhausted. Trying to find care for him is next to impossible. since he is on Medicare. He is to in debt to afford a Nursing home and is over the income limit for medicaid. This is a night mare! Although I have recently set up home healthcare for him it is extremely limited to 1 hour a day and doesn't cover transportation to appointments. He no longer has his drivers licence as it was taken away due to his condition.. This 1 hour a day 3-5 days a week does not give me peace of mind as I am anxious every time I have to leave the house..He is always falling down but is persistent about working in his almost one acre yard. Which I can say looks horrible. Broken sprinklers, as well as killing big sections of grass with weed killer; watering with the hose up to 8 hours a day causing flooding. This is a man that used to have the most prestigious yard in the neighborhood. My Mom, although she is a retired RN has decided she doesn't want to be around any more and is only home 1 to 2 days a week. I really can't blame her but it does put more pressure on me My husband works up to 70+ hours a week and mows the yard when he can.... The rest is up to me. I really need help. My parents make tithing donations to the LDS church of almost 10,000.00 a year but yet I have reached out to the church many times to help in what ever way they can such as yard work, wellness checks and possibly bringing over meals at night on the nights I am not there. I am a full time Nursing student raising 2 children and also working.. His condition is so bad that some days he doesn't even know who I am....He is also abusive verbally so I am really overwhelmed trying to help him without any support. I just do not know what to do any more. I have had to cancel shifts at work to get him to his appointments. Last week I was in the middle of a timed Midterm test for one of my classes and the neighbor dragged him into the house all bloody with his head cracked open. Requiring a trip by ambulance to the hospital. It is affecting every aspect of my life. Yet no one seems to care but me and my husband. I find it sickening that the LDS church in Saratoga Springs,Utah 4th ward, can, with a clear conscience accept all of there extra money from them. Money that could help to provide him the care that he so desperately needs for his disease and not do anything to help him! I have talked with my mother about this and they have convinced her that they will burn in hell if they do not pay it. Another reason I am saddened by this is because when my Dad was well he was always the first person to help someone in need at the church. Mowing other seniors lawns. Helping any one new move into the neighborhood. Or helping anyone that needed help with rides, blessings at the hospital, baptisms etc. All I can say is wow..... What a heart breaking disappointment for him to be let down by his faith. If he was in his right mind It would be a huge blow to his belief system of the humanity this church actually possesses and portrays. If any one has any resources for Utah county that is not medicaid related in Utah that could possibly help my Dad it would be greatly appreciated
3 months ago
For those of you wiith loved ones that have the dystonia posturing, severe stiffness, please consult your nuerologist about Botox it takes the place of baclofen worked better for my mom. She really like it. Also, there are reactions to coming off of baclofen so caution. While they do not get use out of a limb by using Botox it really does help relax the affected muscles. for those who have the odd limb thing going on it is known as "alien limb" syndrome. PSP seems to work like so, please know this is a simplification, but the TAU protien in the brain clogs the nuero recipetors, lime gunk in gears, thus not allowing complete communication to muscle control. Hope this helps.
3 months ago
Hello, I recently lost my mom who had PSP. We were in our 6-7 year which is average. We went to the Mayo clinci for diagnosis. It truely is a cruel diesase. Exericise is your beat defense. For those that have the dystonia posturing Botox has been great for my mom, she liked it alot. Her left side was heavily afected, each case is different. Her will tonlive was incredible, she was on a ventilator four times and came off four times, however secondary i fection (in her case C-Diff) torn her body apart. She was 77. For those of you in the earlier stages using an ipad with apps that speak for you are great was to continue communication. We were still able to ask yes no questions and she could do thumbs up or down to answer. Some say they go thru a lot of pain others no guess that is individualized.
5 months ago
My dad was just diagnosed with PSP My mom tried to care for him, but she was recovering from neck surgery and fell trying to pick him up. Since then both have fallen. Mom wants to take care of him but I don't know if that is possible! My sister and I don't know what to do!
6 months ago
My father is in end stages of PSP now. He's completely alert, can even read, but has 24/7 care, can't do anything else. He was given pureed food but couldn't swallow today. My mother brought him to the hospital tonight, he's 91. I think he'll need a feeding tube. How do you know when it's the end?
6 months ago
Our mother was diagnosed with PSP about one ago. She has fallen twice in the last six months (in addition to falling 3 or 4 years ago while out shopping). when they compared the MRIs from these two most recent accidents, they determine she has PSP not Parkinsons and have given her a six month window. Here is my question about one of the more endearing behaviors we are seeing. She moves her arms as if she is conducting a symphony, sewing or feeding herself. Has anyone else seen this behavior and if so what causes it?
6 months ago
My father,91, has deteriorated so quickly. I so wish there was something out there to slow it down . Pureed food, saliva, not walking slurred words, stiff, just bad. I'm curious what's the longest a person has survived (if you can call it that )with this disease.
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