PSP Association

PSP on television show

Tuesday night 1-16-2018, here in the US, the television show, "Chicago Med" had a story with a woman patient and she had "PSP". This really surprised me as I haven't heard PSP disease used in our media. Has anyone had any experience seeing this on television or is it just being thrown out there for the public now? The patient on the show died of chest infection. (She didn't look like a PSP patient as she didn't have the "stare look" in her eyes.)

Good morning from Joyce in Minnesota with snow and cold.

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That was the 2nd time Chicago Med has had that PSP patient on.

I agree other then the pneumonia it wasn't accurate but at least PSP was on a TV show for all to see.

Ron

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Good afternoon, Joyce from Minnesota. I hadn't heard of that show - it sounds pretty good. I will look into it some time. I would like to see PSP introduced. Do they explain it or is it mentioned in passing? Meanwhile, I am watching the beautiful snow come down from the office window. The road crews are keeping up, alas, so I'll be here until 5. Then the shoveling begins. I do love winter, truly, but especially when I can enjoy the storms at home!

Greetings back to you, from Sarah in snowy Maine.

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They go into a very brief detail of the patients medical conditions but they do cover the issue of having a DNR or not pretty good.

Ron

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Hi, I live in Los Angeles and the temperature is currently 75. Happy happy me.

Thank you for being specific as to the time, date of the program. I will watch it on my computer. I have a recorder (don't have TV cable, have an antenna) and you can only record one channel at a time. I record THIS IS US on Tuesday nights.

In April 23-28, 1976, I was asked to sit on an accreditation team for the Minneapolis counseling programs in the secondary schools. That was my first and last visit to Minn. My memory is not so great but I learned a long time ago to keep track of my yearly trips.

My son, 55 years old, died of PSP May 4, 2017. I did not donate his brain for research, no time to research the hows and now I have HUGE REGRET for my error.

Margarita

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Was your son a donor? If the PSP person is a donor, do they have to specify that they want their brain donated to science, or is it up to the family to state what they want. Have been thinking of this but not sharing my thoughts with my husband who is a donor. Thanks for your reply.

Joyce from Minnesota.

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Hi, as I mentioned my son was NOT a donor.....only because things went so quickly. I understand CUREPSP accepts brains for research. My son was cremated, so too late. I know he would have gladly put his signature on a consent form.

I do NOT have the answers to your questions. I would contact CUREPSP.

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Joyce,

We can help you make advance arrangements. We have helped nearly 500 people with brain donation. It is not necessary if the donor gives consent. The only relevant consent is the healthcare power-of-attorney or legal next of kin. It is best for everyone if arrangements are made in advance of a loved one's passing but at least half the cases we help with are where death is imminent (minutes, hours away). And we have helped quite a few families even after death has occurred. Again, not ideal because the stress can be unbelievable.

Robin

brainsupportnetwork.org/bra...

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I went over this on Facebook I know - I thought that the point was being made that the terminally ill, looking forward to a future of rapid and sure decline, given the opportunity ,might chose to skip heroic measures to prolong life and check out early on her own terms at that moment. I taped it and will watch again - without interruption.😐

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You are correct Aliciamq. The patient was back and forth with the ventilator. She signed the Dnr then changed her mind. I do not recall them saying psp but rather Supra nuclear palsy. This was the second of 2 parts for CHICAGO MED so not sure what they said in the first part. I think there was only one dr who knew how to treat it. She came in with pneumonia and they could not contain it my husband died of psp and his death was similar to hers tho he had been sick 6 years at least she was still eating speaking and moving.and walking. He was not. and I think she just had a few falls at least it was put out there!

Sue

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The show had the same patient on several months back and they went into more depth as to what PSP was. That was the first time I had ever heard it mentioned anywhere on TV. Last night's episode (since she finally chose not to go on life support) provided a great opportunity to have that type of conversation with my husband, who has PSP. Many months ago, he did have a living will and health care surrogate documents prepared. But, last night's episode helped us to re-visit some of the choices that he had made and gave him an opportunity to express how he is emotionally feeling about those decisions.

I know I had read a post on here that someone wondered how to get that type of conversation started. Chicago Med did a great job with providing a good starting point for discussion.

Diane

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I was unhappy with the way the patient was portrayed. She could hold a great conversation , no apparent problems with speech, thought or even eyes. This is far different from the way PSP seems to ravage most of its victims.

Very cold and snowy in Wisconsin. On days like this I’m not upset that I’m stuck in the house. I hope the sun shines wherever you are,🌞

Karyn

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Why we're you unhappy about this. I f you even knew anything you wouldn't make assummtions

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Good Morning Karyn, Yes, I agree with you. That character didn't play a PSP patient like we see PSP patients. Should come and sit with a patient one week and they would know she played the part wrong. The image sent to the general public here is not right. Course not everyone knows about PSP like we caregivers do. But the show did open up opportunities for conversations about the disease.

How is everything going with you? Did you get the hospital bed for Dan? Jim woke up two nights ago and called for the nurses because he couldn't find me and thought I was out with another man. The nurses told him "Ah, she's too old for that stuff!" And they are right. !! It brought a little humor to the day, although I hate the accusations he throws at me as soon as I walk in his door at the nursing home. It's the PSP - not the patient, I have to remember that.

It is a little warmer here in Minnesota this morning. Sunny and snow but no big bad wind which makes a great day. Enjoy it wherever you are!

Joyce

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Hi, this is Tina from TX. This is the first time writing. I'm the caregiver/POA for my 69 year old sister who has PSP for the past seven years. She is living in an assisted living center with 24/7 private aides. She took a rapid decline since Jan. 6th. She no longer walks (mainly in wheelchair and other chairs when not in bed), writes, sees out of left eye and right eye is slowly in decline, gags, has trouble swallowing, constantly moving, has troubles making decisions and has a high level of anxiety. She is retired physician and knows what's ahead for her. Last week she entered Hospice because she is so frail, weak and simply exhausted. She had been going to OT,PT Speech, swallowing and music therapy. But as the new year approached it was more exhausting to her than ever. She continues with music therapy once a week but that too can't continue for too much longer. This is a terrible disease and my heart goes out to all the PSP patients and their caregivers. She loves to go the movies so we take her to the movies twice a week; she then rests all afternoon. She is barely eating or drinking. Thank you for reading.

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I am soooooooooooooo sorry. My son, a musician, towards the end could not see. He stopped watching TV. Also, he had dystonia of the neck, very painful for him. He was 55 years old when he died....after his 2nd bout of aspiration pneumonia. He had had a PEG put in........beginning of a quick decline. He opted to stop being fed.

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Tina,

Sorry to hear about your sister. I am glad your family still takes her out to the movies.

Robin

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thank you.

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