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My mom also has PSP.e also went through torture to get the diagnosis and her situation is very similar to your moms. My mom also has the very severe mental affects that go along with the disease and that has been harder for me to deal with than the physical issues. She is wheelchair confined and cant walk at all. But initially we had the same problems with constant falls and some just so random like falling off the kitchen chair for no reason. My moms biggest issue now is she doesnt accept the severity of the illness and does not want to be in the NH which I dont blame her at all for but I cant care for her with 4 kids and a full time job as well. She is very resentful to me for not being able to do it and it hurts me very badly and wish I could but when she was living with me she wanted it to be all about her and my kids were really getting resentful as well. I guess its a lose -lose situation but its a very tough disease and progresses very fast. I would have to agree with staying with the nursing home and taking her home a few days at a time here and there because as the disease progresses it becomes physically and mentally exhausting on one person plus it puts mom in a bad situation where she is at risk every time you have to walk out the door. There were times i would come home to mom on the floor bleeding or looking like she was knocked unconscious and that is very scary. At least i have peace of mind now that she is safe.
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My husband also was diagnosed with PSP. He can no longer walk, talk or feed himself. Sometimes he used to choke because he would cram as much food into his mouth as he could. He still tries to talk but I can't hardly understand a word he says. I move him from his bed to his wheelchair with a hoyer lift. He is incontinent now which is actually easier for me as I don't have to get up every 2-3 hrs. And help him get to the bathroom. I was turning into a real b.... from not getting enough sleep. I do still help him to the bathroom for a BM. Tho. Not easy. I don't want to have to send him to a NH if possible. He is always very thankful for the things I do for him. Never mean to me. We will be celebrating our 30 th. anniversary in Oct. God willing.
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Hi PSP stands for Progressive Supranuclear Palsy. Its a rare neurologic disease which is similar to Parkinsons but progresses rapidly. Its caused by a build up of proteins in the brain and causes loss of muscle activity, behavioral health problems, vision problems, and dysphagia. Basically..its nothing good
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What is PSP? I've seen it in 2 posts today and haven't heard of it before.
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I was glad to stumble across your post! My mom also has PSP and we went through the same issues with getting her doagnosed. Its great that your mom is walking again with a walker! My mom is wheelchair bound now and it has been a very hard journey. She has the gaze as well but we havent had to start with nectar yet. Her vocal cords have become week and she is slurring her speech now and has signs of some dementia but her outbursts of crying all the time and being so hostile and having hallucinations has been hard. PSP is such a terrible disease and really does progress fast. My mom went into a NH in Feb and she too wants out. I have a full time job and 4 children and it was just too hard for me to care for her anymore, but I know she is safe there and cared for which makes it easier to cope even when mom makes me feel guilty. But before you think of taking mom out of the facility, you really have to prepare yourself for whether or not you can handle that long hard journey. As this disease progresses your mom will come to a point where she can not do anything for herself and may be better where she is. There are always day trips and nice outings you can do with her too rather than taking her back home too.
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sure, first off u can read my profile, but here is a little to let u know all we went through to finally get this diagnosis!!! it took 8 years of mom falling, and severely hurting herself not going to the doctor, blaming the blood pressure meds, and just having a crappy all round doctor to begin with, who didnt send her for any tests, this is how it started, then all of a sudden she started to fall off the the toilet, bang her head get stiches all over her face, bruises, and more things like this, without warning she would just fall to the ground, very scary.........finally I insisted on taking her specialists, neurologists, at first they thought it was parkinsons, noone could figure out exactly what it was! It is so rare PSP, that only one in a hundred million in the world get it!!!! so there is hardly any research on it, the main cause of death is falling, or pnewmonia, when a person has PSP which stands for Progressive Supranuclear Palsy, the first signs are rigidity of the upper body, drooling, and a blank gaze, it is extremely progressive, to properly diagnosis this, a nuerologist has to look at the MRI films of the brain and they find masses of white on the films that distinguish this from parkinsons, there is not really the parkinsons shuffle, (of the feet) but there are some similarities, which I am not quite sure what those are, but someone with PSP also gets dysphasia, where food and liquid can go down the wrong tubes and cause pnewmonia by ending up in the lungs............a speech therapist has been closely watching for changes in my mothers throat studies, to determine what she can and cannot have, she is on nectar fluids, which means a powder has to be added to all liquids to make it thicker so it wont go down the wrong tubes..........also it causes gait problems where the individual leans backwards, and can not get around EVER without assistance, in the last 2 weeks only she started out on just nectar fluids and already needs to have all her meat grinded up, and veggies ..............soon she will need to have a feeding tube, I feel it is alot safer to have this as aspiration is one of the main causes of death, the mouth also seems to form a different look to it, she bites the inside of her mouth too, she was imobile too for a long time until I insisted she go into a facility and get rehab,..............since then she can now walk with a walker again, but still is progressively getting worse with the swallowing and food and throat. Its a very hard thing to watch happen because normally the person isnt suffering from dementia or alzheimers, and they know their desease is progressive and without the proper knowledge and care the person will eventually die..........its very important with someone with PSP to have their loved one in a facility, and a family member print out as much info for the facility to help the person,........thats what I did..............as I said very little is known about the desease as there are so few that get it. there is a website just for PSP, called wemove that u can look up and join and get regular news letters on the progress and any updated info on the desease, so far I havent recieved anything new................. I hope this helps answer some of your question, I tried to explain it as best I could, but if u email me and tell me some more of your loved ones symptoms I can probably tell u if PSP might be likely.....
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This is a little off subject but the diagnosis of PSP caught my attention. My mom was diagnosised with Parkinson's 5 years ago. She has progressed very quickly and has lived with us for 2 1/2 years (wheelchair confined). The doctor mentioned this might be PSP. Can you tell me a little about your mom's journey. Thanks,
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wow, my heart goes out to u!!!! I go to the nursing home daily as u know and end up staying and talking with other people there, as NOONE visits them at all!!!!! Its so sad, they are so ill., and thier families just dump them off there, and leave them to rot, I always bring in my dog, they love that, and then they talk to to me and cry for hours.....Its really sad what this generations values are...they just dont care.........hardly nobody in there gets visits.............its sad, but I am also an animal rescuer, I have 2 dogs that I adopted, they are my whole life!!!! they are so expensive tho, GOsh with the heart worm medication, topical flea and tick stuff, and vet visits really add up!!!! oh and food too......one of my dogs has crystals in his urine, and has to be on a very expensive special diet for the rest of his life!!! so u can imagine! I would feed my doggies before me, I have a good heart, been through alot in my life and have seen things children should never see,,,,,,,but those things I think made me stronger, and more compasionate to the human race!!!!
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God bless you Susan, too. I am very happy to help you and you friends help me a lot too. I am a home attendant and also a caregiver to my elderly family. I do support them emotionally. Thanks God that I have found this support group because I take care of people with dementia, etc.
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YES I DO AGREE! and thanks for giving me the strength to carry on and get a good nites sleep!!! and I will get on my knees tonite and pray for u as well as GOD put u in my life.................THANX AGAIN AND GOD BLESS YOU!
YOUR NEW FRIEND SUSAN
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If I were you, I would discus this with her doctor and only would take her home for one day or two when you are off. ask for a weekend pass and on sunday afternoon brings her back to the nursing home. I think you should leave her continue living in this facility because you never knows if she is going to get worst.
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