Progressive Supranuclear Palsy Explained

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Күн бұрын

Пікірлер: 34

@wanderlust1334 Ай бұрын

I just lost my uncle to this ruthless disease yesterday. To those who are watching their loved ones suffer in silence, please stay strong. God has better plans

@SolangeBrill 4 ай бұрын

My cousin is 73, diagnosed 2 years ago. It's so sad to see his decline.

@ananda_miaoyin 3 ай бұрын

I have a patient with this disease. It sucks but the man can still kick my ass in chess even if I have to move the pieces for him! The mind is still there 100%.

@illyanatidwell2919 2 ай бұрын

Yes they are fully aware their body is being hijacked which honestly makes this even worse.

@wanderlust1334 Ай бұрын

@@illyanatidwell2919exactly.

@JudyGreen-mo5py 2 ай бұрын

He really whitewashed this horrific disease. My husband was diagnosed in 2022, it took a long time to diagnose. Now it is 2024 and my husband can't do anything on his own. Speech has been gone for over a year. He is extremely stiff, movement almost impossible. I could go on and on. Pray for a cure.

@indranidasgupta8982 2 ай бұрын

I agree. This is what happened to my mom. This is a horrible disease. It’s NOT like Parkinson’s. It’s a lot worse.

@cindypanicola7351 2 ай бұрын

i feel same way! my husband had it 3 yrs? Your spouse is at the end stage i recognize symptoms. sad and exhausting and horrible. i’m so sorry

@wanderlust1334 Ай бұрын

I'm so sorry you and your husband are going through this. I watched my uncle suffer n just yesterday he passed away. I too wish there was a cure for this deadly disease but currently there's nothing we can do.

@wanderlust1334 Ай бұрын

@@indranidasgupta8982ik. It's comes under the "atypical" category for this reason. It doesn't even respond to regular Parkinson medications.

@wanderlust1334 Ай бұрын

Worst part is this is not like a comatose situation where u dont really feel ur senses. Patients are completely aware of what is going on, they can 100% feel the pain but don't have motor functions to express it. My uncle was going through hell with this, he was on a ventilator and later on tracheostomy was done. Whenever we opened his eyes, he used to cry😢

@DavidOlsen-e3n 8 ай бұрын

I was recently in 2017 diagnosed with Parkinson’s but I’ve read up on PSP and lately I have the tendency of falling backwards but just my luck I’m able to catch myself I also when I’m eating have a tendency now of spitting up phlegm certain times that a day when I’m eating I also have a stuttering from time to time. I still get the tremors on the left side that’s where most of my tremors always were And my walking isn’t good at all sometimes I walk OK but then all of a sudden it kicks in and I have a hard time walking and my eye movement is very bad. Move my head it’s very hard my eyes don’t automatically move from left to right I have to move my head when I’m have to look to the right of the left or upper down the eyes don’t automatically do that, wondering if I was diet knows correctly I know it’s very hard to tell the difference if I was diagnosed correctly of having Parkinson’s or do I have the onset of PSP I can’t seem to get any help with that and the Parkinson’s medicine right and go very expensive and hard to get but I still get the tremor even though I take that stuff so I don’t know what to do or who I can go to reach out cause they tell me no you have Parkinson’s they tell me I don’t have PSP. Is there any help you can give me thank you very much.

@haniasaleem3832 8 ай бұрын

attend curepsp womens support group and you will get immense knowledge

@alexandruelenaruxandra2720 4 ай бұрын

Hello! I just read your comment… I want to express how sorry I am that you are going thru this… My mother had PSP…. The fact that the doctors tell you that you have Parkinson’s is because it starts at Parkinson but in time, you see differences. The fact that your Parkinson treatments does not work, its a indication of it and also the falling! Parkinson patients do not have the falling issues. I must ask you: do you have family close? Do you live alone? I am asking you this because it will come the time when you will depend fully on a caregiver 😢 Writing this comment to you, made me cry and it breaks my heart….as I have seen my mother go thru this… If there is a God out there, I hope with all my heart that you get granted a miracle 😞😞😞 I wish you a lot of strenght 😢

@iamezekiel1970 4 ай бұрын

@@alexandruelenaruxandra2720my father was diagnosed with with PSP. The decline is super fast.

@jeanierailsback3327 3 ай бұрын

@@alexandruelenaruxandra2720

@indranidasgupta8982 2 ай бұрын

Please have some family support. I’m echoing the other response. I’m so sorry about what you’re going through. Sinemet did buy my mother about two years. I would look into it soon. My best wishes to you… warm hugs 🥰

@junaidahmedessack1345 Ай бұрын

Lost my dad to PSP this week... Really sad

@jeanierailsback3327 3 ай бұрын

Husband passed with “rare ?” disease and neighbor died 1 year before!!! Rare????

@indranidasgupta8982 2 ай бұрын

Yes, it’s no longer rare.

@21Cauzzie 25 күн бұрын

Yes this was my first thought. I’m watching a friend struggle with Cortio Basal disease another supposedly “rare” form of Parkinson. I hope research is well supported.