So heart wrentching! For all the afflicted and their loved ones. Lost my baby brother at 54 yrs. Prior years fit, active, intellectually sharp, enjoyed living life tp the max.. Onset misdiagnosed as myasthenia gravis upon final correct diagnosis.. falls, injuries, slurred speech. fixed stare upward/mask face frozen expression . swallowing difficulty had progressed severely. Bacterial pneumonia set in. 2 weeks in hospital.. Recovered. Spoke with him. So happy to go home..however, he was now placed on feeding tube. He suddenly aspirated in early am hours 2 days afterhis release from hospital with full recovery and an feeding tube in place. He choked to death. Zero oxygen over 10 minutes before ambulance arrived. Commom law spouse warched his close friend do cpr. Declared brain dead. Seizures for 12 hours until taken off life support. Still wonder how such is possible with a trained family member trained by pallitative team to assist with feeding tube.I had no idea he was gone until several days after.he was cremated. I clearly recall his common law partner stating I dont know how im going to manage learning feeding tube correctly. My response he wont be released until hospital pallitative team is sure you are well informed and capable. He was cremated. Finally. I spoke with common law spouse to go over the entire event skowly once more. Her story kept changing slightly. I felt chills run up my spine. His partner blurted out i should have married your brother an hour before he died. I sat stunned, speechless. I had spent the month prior with my babt brother for 7 days. I made him nutrional smoothies. Carefully assisting him to avoid any chance of aspiration. He fought to live for his 13 yr old son and beloved partner. His mind was still sharp as a tack. I often wonder HOW on earth could he aspirate/choke so long before cpr and ambulance with a partner within 10 ft shouting distance!??? No funeral. Nothing. My only comfort is that he is out of pain in our my savior's arms. May God Bless all those afflicted by this insideous terminal disease, including their loved ones.
My mom passed from PSP 10th March 2023. That disease is a monster that needs to be stopped I don't wish it even on my worst enemy. The only picture I have of my mom is of her final moments,like the last two weeks of her life absolutely horrible it makes me cry alot.
My mom passed from PSP aged 65 last January. That final week was brutal and I hope someone soon finds a way to stop this disease. I still have images in my mind that I wish upon no one.
i am just now stumbling upon this video. it is one year ago today that my grandma passed away from psp. she reminds me exactly if norma. she raised me for most of my life, and when she got diagnosed, it was my turn to help her. It’s crazy having to help someone who raised you, and who you saw as such a strong person, shower, go to the bathroom, and eat.
Im so happy ive found things like this...my gran died of it two days ago. i really wish id found this sooner, and i want to help and raise awearness because its such a horrible thing and more needs to be done...
Wonderful to see she had such a postivie and supportive husband. My grandma is going through this, its very hard for her. I wish we could make it easier for her.
Some wonderful advice from Norma and her family. Thank you for sharing. My father had this awful disease. I wish we could find a cure, I pray one day we will through people telling their story.
My mom died from PSP 2 years ago. She had been suffering for 5 years and I also was depressed and finally burnt out. In my opinion PSP id worse than cancer...
@Damika Thennakoon What can I say... You must be strong and brave. You should also be waching if there is any new drug that can help your mother. Maybe scientists are going to discover it soon.
Really sorry for for ur loss, i am in that state of depression now, my Father is diagnosed with PSP since last 3 months, and things just changed drastically, he cannot work, he cannot eat, he cannot communicate all those things in which he was v good at it he cannot do it, and things are Really not in our control.
RIP Norma (I assume 12 years later) , I had to watch my partner suffer from PSP until his death in 2017. It is such an evil disease. I really hope they can find out more about this disease as soon as possible, as I felt so helpless watching him be destroyed by PSP.
Hello, My mother in india was diagnosed PSP in 2021...She is just 67 and used to be fighter to the core. She had symptoms from 2000 but all misdiagnosed. Now she is in advance stages and currently in Hospital as she caught some infection...Her diseases has progressed so fast in last one year that nobody could ever imagine. Doctor who diagnosed also didn't inform us properly. Its so so so disheartening so see My Mumma like this....God Plz give some treatment soon. Can't let biggest treasure of life go away like this. I lost my father when I was 14... Plz suggest what can I do to her once she come out of hospital Ashish.
Oh my God I'm so sorry. All you can do is love her more, care for her more and be positive. Prepare yourself for the worst. I watched my mom deteriorate from the disorder we lost her 10th March 2023.i cry about it every mostly bcs of how she suffered.
Hope you’re mom is doing good day now. Strength to you🙌🙌 my father has been diagnosed with it but only has little symptoms and is in early stage. Did you mother have symptoms from 2000 and only got diagnosed after 21 years in 2021? She is def. a fighter.
My brother in law was just diagnosed of this disease this week March 2023 he and my sister had just bought there first home to then as little as a month later he began to fall and the new Cardiologist that had seen him only a moth before was surprised to see how old looking acting he had become and asked him what happened but he didn’t say much about it but a few months later was dealing with prostate cancer began treatment did well thank god but then he keeper falling even broke his shoulder with one of his falls and now he is finally being treated for this PSP with medication to slow it down I was looking on CZcams just to see what info I can fine to help my sister as to what help might look like I thank you all for your story’s and so sorry for all of you losses of loved ones ❤
My wife of 62 years has a tentative PSP diagnosis after a year of believing it was Parkinson's. Are you able to share what medication(s) are being suggested? It could be greatly helpful for her next visit to her neurologist. Many thanks if you can and will understand if you cannot. Best - James Stubbs
@@ajimbo12345 I will ask but he has is first Nero his doctor for his heart knew of the disease and prescribed a medication for him. I’ll find out from my sister and as soon as possible.
My dad recently passed away withit, He had never been sick in his life in Sept he couldnt walk one day we went to Dr after Dr and missed diagnosed > Then we took him to Duke in Jan they dx him within 24hrs of stay. 2 wks later he passed away
So heart wrentching! For all the afflicted and their loved ones. Lost my baby brother at 54 yrs. Prior years fit, active, intellectually sharp, enjoyed living life tp the max.. Onset misdiagnosed as myasthenia gravis upon final correct diagnosis.. falls, injuries, slurred speech. fixed stare upward/mask face frozen expression . swallowing difficulty had progressed severely. Bacterial pneumonia set in. 2 weeks in hospital.. Recovered. Spoke with him. So happy to go home..however, he was now placed on feeding tube. He suddenly aspirated in early am hours 2 days afterhis release from hospital with full recovery and an feeding tube in place. He choked to death. Zero oxygen over 10 minutes before ambulance arrived. Commom law spouse warched his close friend do cpr. Declared brain dead. Seizures for 12 hours until taken off life support. Still wonder how such is possible with a trained family member trained by pallitative team to assist with feeding tube.I had no idea he was gone until several days after.he was cremated. I clearly recall his common law partner stating I dont know how im going to manage learning feeding tube correctly. My response he wont be released until hospital pallitative team is sure you are well informed and capable. He was cremated. Finally. I spoke with common law spouse to go over the entire event skowly once more. Her story kept changing slightly. I felt chills run up my spine. His partner blurted out i should have married your brother an hour before he died. I sat stunned, speechless. I had spent the month prior with my babt brother for 7 days. I made him nutrional smoothies. Carefully assisting him to avoid any chance of aspiration. He fought to live for his 13 yr old son and beloved partner. His mind was still sharp as a tack. I often wonder HOW on earth could he aspirate/choke so long before cpr and ambulance with a partner within 10 ft shouting distance!??? No funeral. Nothing. My only comfort is that he is out of pain in our my savior's arms. May God Bless all those afflicted by this insideous terminal disease, including their loved ones.
My mom passed from PSP 10th March 2023. That disease is a monster that needs to be stopped I don't wish it even on my worst enemy. The only picture I have of my mom is of her final moments,like the last two weeks of her life absolutely horrible it makes me cry alot.
My mom passed from PSP aged 65 last January. That final week was brutal and I hope someone soon finds a way to stop this disease. I still have images in my mind that I wish upon no one.
i am just now stumbling upon this video. it is one year ago today that my grandma passed away from psp. she reminds me exactly if norma. she raised me for most of my life, and when she got diagnosed, it was my turn to help her. It’s crazy having to help someone who raised you, and who you saw as such a strong person, shower, go to the bathroom, and eat.
so sorry for your loss. god bless.
I am a psp persent
@@jacobthomas842take care, God bless
Im so happy ive found things like this...my gran died of it two days ago. i really wish id found this sooner, and i want to help and raise awearness because its such a horrible thing and more needs to be done...
hiii...my father diagnosed with psp 2 years back..pls help me in finding suitable treatment for this...pls help me
Wonderful to see she had such a postivie and supportive husband. My grandma is going through this, its very hard for her. I wish we could make it easier for her.
So so sorry. Prayers to all.
God bless you Joe and Norma, you're an inspiration to us all
Some wonderful advice from Norma and her family. Thank you for sharing. My father had this awful disease. I wish we could find a cure, I pray one day we will through people telling their story.
what is whwn family not inyresting this person
stem cell therapy or regenerative therapy
My father is suffering from this disease. It is terrible.
My mom died from PSP 2 years ago. She had been suffering for 5 years and I also was depressed and finally burnt out. In my opinion PSP id worse than cancer...
So, so sorry for your loss. God bless you and yours.
@Damika Thennakoon What can I say... You must be strong and brave. You should also be waching if there is any new drug that can help your mother. Maybe scientists are going to discover it soon.
Really sorry for for ur loss, i am in that state of depression now, my Father is diagnosed with PSP since last 3 months, and things just changed drastically, he cannot work, he cannot eat, he cannot communicate all those things in which he was v good at it he cannot do it, and things are Really not in our control.
RIP Norma (I assume 12 years later) , I had to watch my partner suffer from PSP until his death in 2017. It is such an evil disease. I really hope they can find out more about this disease as soon as possible, as I felt so helpless watching him be destroyed by PSP.
Just tell them!
They all love you and will be wanting to help you in any way they can!
Best Wishes x
Thank you! In recent weeks I have been diagnosed withPSP I am still trying to work out how to tell those I love
hi
Hello,
My mother in india was diagnosed PSP in 2021...She is just 67 and used to be fighter to the core. She had symptoms from 2000 but all misdiagnosed. Now she is in advance stages and currently in Hospital as she caught some infection...Her diseases has progressed so fast in last one year that nobody could ever imagine. Doctor who diagnosed also didn't inform us properly. Its so so so disheartening so see My Mumma like this....God Plz give some treatment soon. Can't let biggest treasure of life go away like this. I lost my father when I was 14...
Plz suggest what can I do to her once she come out of hospital
Ashish.
Oh my God I'm so sorry. All you can do is love her more, care for her more and be positive. Prepare yourself for the worst. I watched my mom deteriorate from the disorder we lost her 10th March 2023.i cry about it every mostly bcs of how she suffered.
Hope you’re mom is doing good day now. Strength to you🙌🙌 my father has been diagnosed with it but only has little symptoms and is in early stage. Did you mother have symptoms from 2000 and only got diagnosed after 21 years in 2021? She is def. a fighter.
Lovely Couple/Family
Sending my Best Wishes
My brother in law was just diagnosed of this disease this week March 2023 he and my sister had just bought there first home to then as little as a month later he began to fall and the new Cardiologist that had seen him only a moth before was surprised to see how old looking acting he had become and asked him what happened but he didn’t say much about it but a few months later was dealing with prostate cancer began treatment did well thank god but then he keeper falling even broke his shoulder with one of his falls and now he is finally being treated for this PSP with medication to slow it down I was looking on CZcams just to see what info I can fine to help my sister as to what help might look like I thank you all for your story’s and so sorry for all of you losses of loved ones ❤
My wife of 62 years has a tentative PSP diagnosis after a year of believing it was Parkinson's. Are you able to share what
medication(s) are being suggested? It could be greatly helpful for her next visit to her neurologist. Many thanks if you can
and will understand if you cannot. Best - James Stubbs
@@ajimbo12345 I will ask but he has is first Nero his doctor for his heart knew of the disease and prescribed a medication for him. I’ll find out from my sister and as soon as possible.
@@1soso6 Many thanks for being willing to help. Best James
My dad recently passed away withit, He had never been sick in his life in Sept he couldnt walk one day we went to Dr after Dr and missed diagnosed > Then we took him to Duke in Jan they dx him within 24hrs of stay. 2 wks later he passed away
so sorry for your loss . god bless.
zijn er ook Nederlandse verhalen of filmpjes?
Dat vraag ik mij ook af...
Bij www parkinsontv.nl kun je onder het kopje parkinsonisme een filmpje vinden.
Gostaria ver novos vídeos psp
Em português meu esposo é psp