Progressive Supranuclear Palsy (PSP) - On Our Mind
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- Опубликовано: 8 янв 2016
- Progressive supranuclear palsy (PSP) is a condition that affects the brain with symptoms that worsen over time. Irene Litvan, MD joins William Mobley, MD, PhD to talk about the signs and symptoms of PSP, disease progression, genetic issues, as well as potential treatments on the horizon. [1/2016] [Show ID: 30399]
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My father had this terrible disease and died from this and pneumonia at the age of 69. Not enough is known about it and very little seems to be done to find out. I watched my father get worse each day, week and month. It was horrendous and I would not wish anyone to have to watch a loved one suffer like my dad did. Bit by bit he disappeared in front of me, from walking, talking, seeing, feeding, everything. More research needs to be done and sooner rather than later.
For those who has PSP or their relatives, please don’t give up. My father in law started to have first symptoms of PSP at 65 years old. Now he is 81. Only 2 years ago we started tube feeding. Before that he lived normal life with a help of family members.
Cat Eye Thankyou so much for sharing that with us...giving so much inspiration and upliftment of spirit,bless you. It’s a very dark and scary place being with/caring for someone with SNP.. My friend age 66 has just been diagnosed and the symptoms seem to be happening quite fast..it’s scary. I’m so glad to learn
You still have your lovely dad with you and at such a good age. I sincerely hope he weathers the tube feeding and still has a good quality of life with you all, This illness is so rare it’s taken several years to get a diagnosis..it feels that drs pass it off as Parkinson’s most of the time and personally I feel that the majority of them have not been made aware of what to look for which is slightly different. In our case we had a very good neurologist in our A&E, who looked at my friends eyes and was able to decipher that way, so more medical training is a must I think.
Up until now I had never heard of Tau protein collecting in pockets in the brain rather than continuing throughput the brain, but the pockets as I understand it start to kill off surrounding brain cells, which then affect the patient’s mobility speech, etc etc...really horrible for the patient , knowing what may follow.i wish everyone out there with this awful illness speedy recognition and then treatment to slow this illness right down, and ultimately a cure. 💐💕🌈
Thank you Cat eye for the hope. Much love.
Thank You So Much for giving us hope . Can you share some description of care and treatment ...
@@utkarshsrivastava5387 from our experience I feel we made one mistake. We delayed tube feeding. Doctor advised us to start tube feeding due to frequent episodes of choking. In the end my father in law got pneumonia. He admitted to hospital for a month. Doctors saved his life but quality of life wasn’t the same anymore. Doctor inserted tube for feeding and tracheostomy tube for frequent suctioning of phlegm. All of this due to pneumonia. Since he wasn’t eating for a month in the hospital, he lost ability to swallow any food or liquid. Plus his legs and hands lost strengths as well. After a month in the hospital he became 100% dependent but live for another 2 and a half years. If we listened doctor advice and accepted tube feeding his last 2 years of life might be more comfortable. I will advice to use stomach button type of tube for feeding. It is small, not noticeable and easy to feed. You can combine like water in the mouth and food via tube because after pneumonia my father in law wasn’t allowed anything in the mouth, even water. Just using wet cloth to wipe inside his mouth. Everything will be leaking to the lungs.
I’m just sharing from experience.
@@utkarshsrivastava5387 last 2 and a half years we used only milk powder for bedridden patents for feedings. For supplements added some liquid COQ10 and ginger powder. My father in law passed
away peacefully at home at age of 82. Until the last day he was able to recognise people. For communication he used his finger, if up is yes, down is no. Please respect their wishes and decisions. If your love one still able to talk, please ask their opinion about their future. Like if they get pneumonia, do they want doctor to save them or let them go. We never ask, that’s why keep sending to hospital because no one can make a hard decision.
My dad has the condition and it hurts me to see him like this. This is a horrible disease and I wish it could be cured
I'm 65. Female. PSP is one diagnosis they're looking at for me. Scary. I see the specialist on 4/18/23.
My mom also had psp. She passed away 3 years ago😢 She was only 59. It started when she was about 56. Diagnosed wrong in the beginning, and only found out it was psp 2/3 months before she died. It was heartbreaking to see she was a prisoner in her own body. Still reconized everybody, but couldn’t speak anymore. Also ended up in a wheelchair for the last half year. I wish everyone who have it or have a loved one that have it, a lot of love and strength❤️
Same thing happened with my grandpa, died a few years ago at 60. Horrible to see him the way he was. Couldn’t move, couldn’t speak, but was the same man on the inside
I’ve just been to my moms funeral today she died of psp and your message above is exactly what happened to her
I’m so sorry for your loss. I hope it was a beautiful funeral. I had mixed feelings. Offcourse awful that i have to miss her, but for her in the end it was better she passed away. There was no more joy in life for her, nothing to look out for, every day a little bit worse. Now she is in peace. I still miss her every day.. I wish you a lot of strenght and hope you’ll find peace in it as well🌟
Sorry for your loss…my father was recently diagnosed with psp & is currently hallucinating a lot and it’s really difficult 😞
@@Aliteraleyebrow o0
My father passed away 2 weeks ago from PSP. It's terrible. He was suffering for 4 months... I cannot still believe that he is gone, I'm in the clouds and it feels so empty and absolutely terrible ...
omovses I am very sorry for your loss.
One day at a time. 🙏🏻💙
I am sorry for your loss. My father has this terrible disease.
Very interesting,thank you so much for such an excellent educational dialogue.
I lost my mother to this horrible disease in 2005 she suffered visibly. It is a cruel diagnosis for anyone. I hope someday a cure or treatment can be found.
Thank you Doctor Irene Litvan and Doctor Mobley. It is very informative and brief summarize of disease. I am not a neurologist but long long time ago in neurology rotation which is compulsory for my specialty. I ran into PSP case. It still left a horrified impression on me.
Genetics may be a key factor. My mother suffers from PSP since last 5 years. Her mother too suffered from it.
Thank you I drank well water for over 15 yrs something to look in to
My aunt just died from PSP. This is a horrible disease and I hope that someone can find a cure
very sorry about your loss, I know its terrible disease. my dad has been diagnosed with PSP (first misdiagnosed with PD). Its been very progressive and quick. He was diagnosed with PD about 5 years ago and abut 3 yrs ago PSP. Now seems like he is in the last stage of the disease, which is terrible. He has PEG tube since he cannot swallow and he's been hospitalized couple times cuz of pneumonia.
Now I'm trying to get medical cannabis for him to see if that helps
If you don't mind would you please share what was the exact cause of your aunt's death? I know PSP itself does not cause death but complications from PSP like pneumonia, choking etc may cause the disease.
omovses my fiancée just diagnosed with PSP almost a year ago. He is only 58 years old. At first he was diagnosed with early onset of Alzheimer’s then PD. Doctor ran so many more tests and different Doctors and it is PSP. He did PT, ST but not helping so much. It’s only been several months I already see the progression. It breaks my heart to see him so different.
omovses yes the disease doesn’t necessarily cause the death but it is the pneumonia complications that caused the death due to poor swallowing.
Thank you Lea for your comment. Its terrible to see your loved one in this condition. My dad has been in bed since August (been 3 months now). He does not talk or move and even tube feeding is very hard nowadays. It's very hard especially for my mom who is with him taking care of him 24/7. It's horrible to see him deteriorating so fast. He lost weight and does not eat much no more. I hate to see him suffering and being unable to help him or alleviate his pain. My prayers go to your fiancee.
My loved one has been diagnosed with Parkinsonism features with PSP.
Carbidopa-Levodopa has helped him tremendously.
We understand it becomes less or non effective after 3 years, we are at 2.5 years and pray we are of the few it continues to work for.
My sweet mother is at the two-year mark after beginning it… she’s now no longer speaking and has had a major respiratory issue. I’m very upset but what can we do? She’s 85 and was just diagnosed as a diabetic as well.
My father passed away in 2010 at 68. 8 years with a parkinsonian disease (PD? MsA? PSP?). We don't know yet. Now, my 74 year-old mother has been diagnosed with PSP. Syntoms started 3 years ago. And my 53 year-old brother also has been diagnosed with probable PD, at the moment it isn't possible to determine because Syntoms have just start (rigidity and tremor). It's a curious case because my parents have no familiar bond. So it seems that some environmental thing influenced.
My brother is suffering with psp. He is 55 and is in an advanced stage. Its very sad. Earlier this year, my mum passed away in India with Parkinson. However seeing all the symptoms of my brother I want to say mums symptoms were the same and may be she was not diagnosed correctly. I'm concerned if this could be a genetic disorder. My brother and mother were in different countries, not sure if environmental had any effect.
@@donnakadaru1437 I'm so sorry about your mother and brother. As you said, maybe your mother also had PSP. 30% of patients diagnosed with Parkinson in life actually had a Parkinson Plus (MSA, PSP, Lewy, Corticobasal). On your genetic point, according to significant data, there is no evidence, there isn't a gene for PSP. Althouth your mother and brother have lived in different countries, they lived togheter at the beggining, right? They were exposed to something long time ago that made the disease start later. According to today researches, it is a combination of environmental and predisposition factors.
@@Hudsonmarques thank you. It's so terrible to see my brother suffering. I guess nothing much can be done today. I pray that the rest of us siblings are spared of whatever causes this disease. We all grew up together.
How is your brother now..My sister died last week from psp..She lived with it 4 years
@@sarathsirimanna8964 I'm sorry for your sister. She's resting in peace. My brother's symptons have progressed more and more. He has more than 5 years of symptons , and it seems to be Parkinson Disease. My mom, otherwise, has a Parkinson Plus, probably PSP. 4 years symptons started. Today she's in bed, difficulty to eat and speak. Parkinson Plus (MSA, PSP, CBD, etc) progresses faster.
Parkinson is terrible. PSP seems to be even worse. :(
Hello Dr !
I’ve just watched your program
One of my family member suffer from this disease
May I know what treatment can restrain the condition? Or have you found any cuteness to this condition ?
Soursop, rotenone can cause PSP too
May I ask a question does PSP affect your mental status right from the beginning or towards the end of the disease?
If not mistaken, psp patients are mentally quite clear, that’s why people are saying that they are prisoners of their own body. Unless, they have another sickness that effects their mind. But keep in mind, that some medications might
compromise their mind. Side effects of medications.
Czy mozna naawiazac kontakt z osobami ktorzy to przechodza celem doswiadczen i wspierania sie wzajemnie moj mąż ma 58 lat i wlasnie ma psp , , ma zaburzenia rownowagi bola go oczy slabo widzi i zdjagnozowana chorobe , psp , bardzo prosze o kontakty ludzi ktorzy by chcieli byc razem. I sie wsperali ,
MY beloved husband has this awful disease. Watching him slowly disappear is heartbreaking for our family. 🥲🥲
I am so sorry. May you get the help he needs. My dad has it, and is at the advanced stage of the disease. The important thing is to make them as comfortable as possible.
I only figured out my dad probably has PSP because all the symptoms match, and because of the increased groaning symptom. Does anyone else's family member have that symptom? He is 78 and it's been almost three years and he is getting worse and worse. I know there is no cure but I just wonder what the life expectancy is because it has been so tough to watch and care for.
Hey buddy my uncle was 73 when he died 3 months ago , he 100% had this illness , he was diagnosed with distonia , he lasted 3 years with it. It was horrendous seeing him progressively get worse and worse
Yes, my mother is 78, and she was diagnosed 5 years ago. She is now in the advanced stages, and most days she screams and wails, sometimes for hours. It's harrowing to witness her in this state.
How is your mum now..My sister died last week from psp..She lived with it 4 years..cancer is good than psp
@@sarathsirimanna8964 she's now in palliative care. She hjas lost all speech and all movement but was in a state of constant agitation, screaming all the time. Now she's at least peaceful. It's hard to imagine a worse disease.
@@sarathsirimanna8964 I'm very sorry about your sister.
Some people are saying Donald Trump may have this problem. They point to his awkward, forward-leaning stance, seemingly increasing difficulty speaking, repetitiveness in his speech patterns, etc. There is a drawing going around the internet that is supposedly from a lecture given in 1888 by French Neurologist Jean-Martin Charcot that looks uncannily like Trump's posture. I wonder what Dr. Litvan would say about all this.
Trump is just a garden variety moron.
PSP sucks! Do people with it also hallucinate??
Due to side effects of some medications
@@cateye6552 this was even before the meds but thanks for responding.
my half sibling's mother has psp for 2.5 years now
people keep saying that the cause is not clear, but it is crystal clear to me. 1 thing is common with people that have this condition and that is chronic stress and apathy, she was self centered, easy to anger, and depressed long before developing this neurological disease. we actually started to see improvements with meditation practices and natural medicine (cbd oils, mushroom microdose) as these medications help with both stress and gives more empathy to people and the effects were actually huge.
Seems to me you’re victim-blaming there. You’re saying the cause is crystal-clear to you but that’s NOT THE CAUSE of this illness. It’s only what YOU feel for this poor woman and the construct you’re putting on her disease.
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Poor sleep habit is also strongly related to this disease
This conclusion is terrible and is painting a horrible picture of those suffering from PSP. My father was the kindest, most patient man I've ever known. He was gentle, calm and caring. He was very slow to anger, extremely selfless and very active. Quite the opposite of what you're describing.
@@MrsRobinNL did he have trouble sleeping? Chronic issues ? Or did he take SSRIs or sleeping pills?
#DystoniaMovesMe
has anyone tryed cbd cannabis ... any benefits whatsoever?
I have been putting 1 drop of cannabis oil on my husbands gums am and pm. His body is more relaxed and not as ridged. He is also sleeping better. Althea
Hi ,
My dad is diagnosed with PSP ( and he has the PEG TUBE already since he cannot swallow anymore).
I read lots of papers on Cannabis and PD, seems like it helps , so I wanna ask my dad's neurologist whether she will prescribe some cannabis for him (oil,powder or patch form) since in the state of PA its only available medically.
@@altheacutler3746 Any update on the cannabis treatment please?
@@omovses Hi i know your post was a year ago but maybe youll see this anyway...I was diagnosed with PD at first Oct, 13th 2016. I will never forget that date... anyway i knew wasn't PD in my soul. for one thing PD meds didn't do anything except give me spasms in my neck. i went for a second opinion at Emory a there i was diagnosed with PSP I guess mainly because of my eyes! OK let me get back to the cannabis I smoke the stuff i get from a friend of mine... although i am an ole time hippy. But let me tell you, i wouldn't want to go through this shity disease with out it! how is your dad?
"You can trace every sickness, every disease, and every ailment back to a mineral/vitamin deficiency"
soupper soulger my mother has this disease there's no to no Trace or way to trace this disease
You are right on. I couldn't agree more. My dad had the disease and I am positive vitamins and minerals had a MAJOR role in its development. The long term marginal deficiencies destroy the cells... it's science at its finest.
Tell me more about your name intrinsic factor because that has to do with absorbing minerals
I think air embolism (when one or more air bubbles enter a vein or artery and block it) in brain is reason of progressive supernuclear palsy. More research is needed in this regard.