Newly Diagnosed PSP

My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two years. At the same time she was going through some family issues and it was taken as depression by doctors. She was treated for depression until recently when a neurologist confirmed the diagnoses. It is devastating. Her memory is fine. She speaks softly and tends to repeat. She falls if unattended especially on steps. Her gait is unusual. Her neck is stiff and gaze fixed but she can move her eyes and neck on instructions. Her memory is fine and she can talk about just anything.

What stage of PSP is this? Does anyone know of any alternative treatment that can help slow down the progression?

I will appreciate any answer.

Thank you.

Ann

32 Replies

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  • Ann my husband is now in a wheelchair all the time, he is coughing and choking, which is horrible to see, I hate PSP so much. George was diagnosed in 2014 then again in 2015, so I think everyone is different, George still remembers things, thinks he will be able to walk again, talks about building and extension, he was a building surveyor. My heart goes out to you all here going through this, sorry can't be more helpful, but always here if you need to talk. Sending you a big hug. Yvonne xxxx

  • I hate this PSP. Never heard of it before. Sorry to know about your battle I hope your husband is not in pain

    I had posted a reply to you but can't see it now. I'm new here so probably making mistakes until I get used to it. xoxo

  • The forum technology is a little flaky at times.

    Your post will likely re-appear.

    Best

    Kevin

  • Hi Ann

    I'm sorry to hear your news.

    We tried every reasonable alternative treatment we could find. Minimum of six month trials and we focussed mainly on things which had shown promise in initial research trials. None of it appeared to help.

    PSP is a little different for each person affected. Essentially a plaque forms over the top of their brain and smothers it where it forms. So exactly where it forms will give different symptoms. Add to that the brain actually tries to cover for those deficits and so we see a drop in functioning often followed by a slight increase a few weeks later. The increases are never as large as the drops.

    So asking about stage is not too easy to answer, or helpful. If you look on the PSP Association website you will see briefing papers for professionals. They are quite easy to understand and they are exceptionally well written.

    Welcome, I hope you will post more and join in this supportive forum.

    Kevin

  • Thank you so much for your detailed answer. I will definitely read the papers written for professionals. I'd never heard about this disease and having sleepless nights since her diagnosis.

    I hope they find a cure sooner than we expect.

    Take care and best wishes.

  • Oops; I posted this wrong.

    So sorry to hear of your sisters psp! My mom was 76 when diagnosed last year, which makes the prognosis even less predictable than for someone like your sister who is diagnosed at the more common age. She definitely sounds early stage to me. My mom has progressed quickly (after fall resulting in brain bleed/concussion in April) and is now incontinent, virtually incapable of communication (cannot write or speak and barely able to respond with thumbs up/down), has sometimes severe (if understable given the frustration) anger/outbursts or crying, and is very, very slow/rigid and often has bad back pain. But we did spend the 6months after diagnosis (she had symptoms for up to two years prior) going to shows, out for meals and generally taking advantage of life - and I'm super grateful we did that! Are you her primary support or are there others involved in helping? I wish you serenity and an ability to appreciate the memories you're still able to make with her. the alternative isn't better, right? Hang in there.

  • Thank you for your kind words.

    We are trying to prepare for the painful moments that are associated with this horrible disease.

    I'm not the primary caregiver. Her two daughters live with her. They're arranging an attendant for her as both of them work and have to stay out during the day.

    It's devastating. My thoughts have frozen. I don't want to think about what future holds for us. It's painful.

    Thank you again.

  • Many things can happen to prevent people from reaching the natural end of this cruel disease, including heart attack, stroke and the choice to stop eating/drinking. BUT, focusing on now (while being practical about the future) certainly helps - as with all "endings". Best to you all! Having kind carers will Go a long way too!

  • And this one too! I guess I'd never posted an original thread myself so don't get the system!

    Anyway: We also found PT, OT, speech therapy and a few Parkinson's exercise classes (dance, yoga, etc) helpful in the initial phase - something to do and until he bad fall in April, it had made a real difference for both is us! We have spoken to a few social workers and hospice nurses to make sure I am clear on my moms wishes for the end and to talk about her sadness and fears.

  • Fortunately my sister does not know about the disease. She hope she will be ok. We want to leave her in this ignorance. She is hopeful.

  • Everyone needs to know the person affected and make the decision they think best. My mom doesn't know the 5-year (typical) life expectancy post diagnosis - since it seems so vague to be arbitrary given it affects everyone so differently. Her 5yo grandson calls it a "falling disease" and that's what my mom sees it as also. I haven't found the need to elaborate further (though I don't keep anything from her - we go to all neurons appts together). There is no right/wrong, just individual families dealing with it. Wishing yours well.

  • Sigh. Trying to cope and learn more. Difficult times ahead.

  • Can't underestimate hope either! We spent first 6-8 months in very positive space and I wouldnt trade that for anything.

  • Dear Ann,

    my husband Barry was diagnosed 10 months ago with PSP and Misdiagnosed for 4 years before.

    He has had all the symptoms your sister is having but that was some time ago

    I would like you to stay in contact with me as We could possibly be of assistance to each other as your sister progresses.i would like to know about her next faze.

    We can compare and maybe we will understand this devastating disease a bit better.

    There are many lovely people on this site who have suffered so much as carers..... GOD BLESS them

    Someone on this group ( can't remember who said " the only thing that's predictable about PSP is that it's unpredictable"

    one question. Do you have a carer that can relieve you sometimes ???

    I mad the mistake of doing it on my own for two long.

    Much love Althea 💛🙏

  • Thank you, Althea. I'm glad I joined this forum. It's therapeutic. So sorry to know about your battle.

    Can you share more about your husband's initial symptoms? How many times did he fall and how?

  • Hi PSP Help, let me know your name it's easier to get a picture of you in my mind.

    Barry broke his back and had a kyphoplasty operation in May 2011 this was the beginning of his falls.

    2014 he was diagnosed with Basel Ganglia disorder.

    He started becoming reclusive and was unable to write and eventually gave up reading.

    His eyesight became almost tunnel vision.

    He gave up driving in June 2015.

    Slow decline after that. He gave up on the cell phone and couldn't dial on a home phone.

    His fingers and hands lost strength and his body was getting stiff.

    Couldn't hold his camera.

    He has had many other bad falls and fractured his back again in Nov 2016 He has probably had about 50 falls that could have been worse if we had not been with him.

    At this point in time he is unable to walk unattended.

    As you know each person is different but I hope all the assistance you receive from this group is beneficial.

    I wish you strength in abundance at this difficult time.

    Much love, Althea 💛🙏

  • My name is Ann :)

  • 💛🙏

  • I'm not the carer. I live close to her house. She has two daughters to look after her and a husband who himself is a patient. The girls work and are hardly home. I travel a lot because of work. We are looking for a 24 hour caregiver for her to at least save her from falling. I'm dreading the future.

  • So truly sorry to hear that it maybe the beginnings of awful road of PSP. Do your research and hang onto your hat it going to be a rough ridd.great group here.

    Take care

    Dee in BC

  • We are mentally preparing ourselves for the nightmare. It's scary. Thank you for your support. 😢

  • Ann, it is scary the possibilities of what is to come! but once you spend some time on this site (and learn more), i hope you'll also see that there is such a wide range of PSP experiences. your sister surely will be better off in some regards and worse in others. and there are examples of good, peaceful endings. since none of us get out alive, all we can do (i think) is hang on for the ride knowing that uncertainty does not have to mean the worst. and not everyone gets the opportunity to truly appreciate their loved one before saying goodbye, which - on good days - PSP allows.

  • So sorry you are dealing with this. When it comes PSP the road is different for each, length of this road is unknown. What is known is it will be bumpy, it will be curvy. You will run across a smooth spots, unfortunately, as time progresses, they become fewer, learn to enjoy those moments.

    My father has PSP, my mother is his full-time carer. Myself or one of my siblings stop by every evening to give mom a break, help where we can. My father is wheelchair bound, he is no longer able to do anything for himself, including bath, cloth, or even feed himself. He was diagnosed in Nov of 2015, although he has had symptoms as far back as 7, possible 10 years ago.

    I don't post much, but I do read a lot. The things my father is going through, the difficulty my mother faces taking care of him, and the roller coaster ride we are on, it is comforting knowing there are others out there who understand.

  • So sorry to hear about your father. I hope and pray that God gives your mom health and strength to deal with the challenge. Stay strong. We are here to comfort each other.

  • Does anyone here know of any success with stem cells therapy for PSP?

  • A couple of people here told of trying it. Some improvement was, I believe, reported, but no cure. What I have read in other places isn't encouraging, and there have been suggestions that the science doesn't support the treatment. if you do a site search here, I'm sure you can find the past posts with better information than I have. Right now, I rather regret not pursuing it. You might also look up the posts of Christine47. She has written a great deal about alternative treatments. Good luck and love, Ec

  • Thank you so much. I appreciate your reply. I have spoken to a stem cell clinic in Switzerland yesterday. They said there is evidence of 40 to 70% improvement in the symptoms that can last from average 4 to 6 weeks.

    This was not the answer I was expecting. 4 to 6 weeks on average is definitely not worth trying. I am now focusing on alternative treatment. Thank you again for replying.

  • yes. 4 to 6 weeks seems a poor reward for the ordeal. Our neurologist recommended high doses of CoQ10, and my sweetheart took that for a long time. I don't know that it helped, except to give us hope that it might.

  • Thank you for your reply. I really appreciate it.

    How much CoQ10 per day did your neurologist recommend?

    Did you try any alternate therapy?

  • 1800-2400 mgs per day. (My guy weighed about 200 pounds.) I did post a bit about her recommendations. Dr. Apetauerova, of the Lahey Clinic outside of Boston, is a specialist in PSP, so I do believe my guy had the best care possible, which is a comfort. Other than that, we tried a few Parkinson's drugs, which did no good, but were worth trying, she reckoned. I wish we had started the LSVT Big and Loud programs earlier. They both were greatly useful, but would have been of even more benefit, I believe, if he had been stronger when we began. ("Big" is the movement element and "Loud" is the speech element, given by a physical and speech therapist, respectively.) They were also fun.

  • First, I am so very sorry for your sister's diagnosis. My husband was diagnosed one year ago come November. We saw symptoms during the summer that led us to the neurologist. In the year since diagnosis I have seen some decline. However, he has managed to control the choking better, and reduced the falls. His vision, however, has declined. My heart aches, but I'm trying to hold on to the good moments and hope for the best.

  • Sorry to know about your husband. All of us are in the same boat here consoling bf each other. Nobody can understand the pain we go through. :(

    My sister does not have choking problem at this stage. She's slow, unbalanced gait but the most obvious problem is her gaze. She's sensitive to light and her eyes keep shutting. She has an attendant with her 24/7 so her falling problem is under a strict check. She eats well but looks and sounds depressed. Even if we force her to smile she brings a faint smile. Haven't seen her laugh or giggle since her symptoms appeared. She was the bubbliest in the family. She was known for her rudeness (loud laughters) in public. She is not 'rude' anymore :(

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