Hi, my dad was diagnosed with PSP, last week, they think he "may" have had since 2012 or so. He is going in for a 2nd opinion at the Mayo Clinic in Rochester but they are relatively positive this is what he has.
So, my question out there is what can we expect in the next 6 months or so, lets say he has had it since 2012, so 4 years. I understand the progression varies with each person. Is there any opinions on when you think it got noticably worse, like year 3, 4, 5, etc.?? Right now, he is not showing too many real noticeable signs, the falling down(and I am not sure how often or how many times he has fallen) is what he went in to get checked.
I appreciate any feed back
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jmkdmk
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My husband was diagnosed in 2013, he is in a wheelchair now most of the time, coughing a lot, loads of urine infections, some days he is worst than others, people are so different from each other, so it is hard to say what stage your dad will be in 6 months time. Sending you a big hug, this site is the best thing ever. Yvonne xxxxxx
You are correct in saying progression varies with each person. My husband was diagnosed in 2010 and like your dad, the falling was the main problem but his speech was slurred as well. 6 months later I had to leave work as he fell frequently by then. Now, 6 years later he can do nothing by himself. He has a PEG in his stomach for feeding and requires 24 hour care. Please don't let this scare you though. Your dad still has time to do things he has always wanted to do so encourage him ( and your mum if she will be his main carer) to do things now, don't wait. You may find your dad stays as he is for a few months but one day won't be able to do something he is doing now. Hopefully your dad will stay fit for a very long time but just in case, don't put off til tomorrow what he can do today.
It's good you found this site. We all learn from each other and always have someone to "speak" to who knows what we are going through.
The progression is really really variable. Some folks go dramatically downhill in months, others have years. I think the slow start for your father suggests that he will have a slower progression - but that is only from my observations from folks on this site - I have no special information! My guy was diagnosed in late 2011, although he had symptoms at least as early as 2006. It was confirmed in February of 2012. We had a couple of pretty normal years after that, did some travelling. After that things got pretty bad for a couple of years when the falling meant constant fear and destruction and stress. Now his falling is less because he can't get up much and spends most of his time in a wheelchair, so things have evened out a lot. He is still at home, and I have aides there through the day so he is never alone. (I work.) Just lately has his decline been more general.
In short, I wouldn't expect the next 6 months to bring you a radical change, but you might want to try to be prepared for the next stage.
Get him to think about a safer home environment and make sure his affairs are in order. The apathy and inability to organize things will make that very hard to do much sooner than you'd expect. Most importantly, encourage him to do now whatever he wants to do. Make some happy memories if you can. I wish I had recorded my guy's voice. I miss it so very much.
I just read Yvonne's post to you and I must say we are very our husbands share many of the same issues as well as time of diagnosis though I think B has probably had it since 2011. The summer after his diagnosis, he was building a deck the next summer he gave up driving and this summer he is semi wheel chair bound. In 2012, the Optometrist found nothing wrong with his eyes ....in 2013 It was his lack of downward gaze that made me think it was PSP...and dr confirmed it. My husband is very strong; physically is in good health, but cannot talk nor does he care to talk. He cannot swallow and is fed via a feeding tube called a PEG. Obviously he cannot walk and though he still uses the bathroom incontinence is becoming more of an issue.
I wish you and your dad luck that you find a good medical team . CurePSP.org has many good resources to enlighten you , your family , and your medical community to this rare and often unheard of disorder.
Communication will become difficult so learn sign language even if you make up your own you know different signals for like simple things like the remote for tv or he has to go to the bathroom. Even just learning the ABC,s. It will become harder and harder to understand him so if you are lucky enough to get ahead start than by all means do it. also I got my aunt a whistle because she could no longer call out my name when she needed something, they also have a type and talk that he can use his voice will become a wisper and you will not be able to understand him or hear him and believe me it gets fustrating and you will want to pull your hair out so prepare and get a jump on things.
Hi there, my husband was diagnosed in 2014 but showed symptoms well before that. He was able to get about with me as his walking aid until 6 months ago and uses a walker called a Ustep and has recently been using a wheelchair for outings. Unfortunately he fell and broke his hip last week when trying to do something he isn't capable of doing, reckless behaviour is part of the condition as they loose the ability to risk assess, definitely the case with Ben. I'm not sure how how will be post operation but imagine there will be a decline in his independence. He has been more difficult to understand of late and more apathetic. As others have said you just can't say when the various symptoms will arise. This site is great and full of information and support, don't know what I would do without it.
My husband was diagnosed in 2913 but had had symptoms since about 2010. In 2013 he was walking with a wheeled walker and we went on several holidays. In May 2015 he started using the wheelchair full time after many falls. Now he can stand (just) for transfers by standing hoist or two carers. His speech is just a whisper now, food needs to be a soft consistency but he can still eat and enjoy it. He chokes and coughs a lot and makes throat clearing noises and moaning a lot. His eyes are painful and sight very poor. He has a hospital bed and roll in shower/wet room. He is urinarily incontinent and wears a conveen (external catheter) day and night and sometimes pads when bowels are playing up (this varies from week to week). His muscles are very stiff and sometimes painful and arms and legs either won't move at all or move involuntarily. All symptoms are worse when tired.
HOWEVER, he understands everything, he hears everything, he enjoys outings, sitting in the garden and seeing the family, he understands current affairs, voted in the referendum and sometimes has a laugh with his carers.
I think his progress with this disease is fairly typical, although I know that some others have a much slower progression. I'm afraid I don't think there is any magic formula as to what you can do to slow the deterioration. I know others feel they have been successful with a range of supplements, treatments and excercises, but I think it just depends which bit of the brain is being affected by the tau tangles at any given time.
The only advice I have is to plan for the future, get affairs in order, make any adaptations that might make things easier ahead and THEN do all those things he has always wanted to do, make happy memories and enjoy being together.
This site is hugely helpful so keep posting. People here have lots of experience and usually have an answer to most questions.
Hi how I wish there was a standard progression M was diagnosed in Sep 2012 but local optician had spotted issue and suggested Steele Richardsons in Mar 2011 we believe she had started symptoms in 2009 when unable to turn quickly while dancing without feeling odd (no falls until 2011). She is now no longer mobile, but can stand with help, cannot swallow so has a PEG, no speech, gets confused in trying to answer, unable to hold herself upright or hold her head up. But she is still cognate able to respond to people and radio, (TVs no good too bright and unable to hold head up.)
While a couple of friends we met in 2012 at a PSPA meeting in Warrinton who were PSP sufferers they are still mobile and able to swallow progressing in different ways at different severity. Both are at least 10 yr older than M so I think there may be different types of PSP which may be be dependent on age of onset for severity.
Sorry unable to give you a definite answer but keep reading the site get your dad to read or listen to posts. Do not give up chasing professionals and services. Be ready for bad days and even worse poor responses from uninformed medics. Best wishes Tim
Thanks Easterncedar, not too bad, batteries seem to be recharged then have a bad night waking for no reason other than same times as M used to wake.
M settling into nursing home but not happy. I go to feed her daily at lunchtime (advantage of early retirement) and then out for a walk, home for a few hours then back about 7pm to settle her for the night, so she realises I have not left her. She is reasonably healthy at present not fully bed bound sits in wheelchair or recliner for daytime. She has long periods of apathy without reaction, but if interested like watching (listening) to tennis matches can remain concentration for hours.
We are doing reasonably well, thanks, Tim. My mother, 89, is not well, and I am going to help care for her for a week, 10 days from today. She lives 640 miles away, an 11-hour drive. The VA offered to take care of my sweetie for that time in their hospice wing. He is really upset about it, but has such trouble speaking that we can't work through the cause of his worry. I have asked him to bear it for the week, promising him I am not going to leave him there. I toured the very nice unit and took photos to show him how lovely and comfortable it is. We have had many interactions with the people there, so I know he will be in good hands, but he will be anxious and lonely.
I wonder whether I will be able to rest easy myself while I am away. I hope he will not lose too much ground.
I bet you know something about what I am talking about!
Oh come on EC, you know that's not true. I have said this many times, but while we are shouting at our loved ones, they know they are alive and in a reasonable place. Not one of us shouts, when the chips are really down, not even me!!!
Try thinking about leaving your man this way. Would you be leaving him, if you thought for one second there would be a serious problem? No, of course not! You are telling him that every thing is fine. He knows that, of course he is not happy about going into the hospice, but accepts your Mum needs you.
As for what he was trying to say, if he is anything like S, it will be some thing completely different, nothing to do with this week away!!! Probably trying to say, he didn't like last night's dinner!!!
So cheer up, I know you are going on a bus mans holiday, but as they say, a change is as good as a rest! Hopefully, this will show you both, that weeks respite works and you will both benefit from them.
Thanks, Heady, I'll be okay, and so will he. But to be absolutely honest, I DO shout when the chips are down. I'm not as good as you are! I never knew I had such a bad temper until it got tested. I am the best he's likely to get at this point, though. He's in no condition to go out looking for a better girlfriend now!
I appreciate the support, though. This site has saved us in so many ways!
Hey Jean, that's a good one! Never thought of that! Let's face it, we are all evil witches, trying to do our men down. I don't think so. They are lucky to have us, I don't see a queue at the front door!!! What was the line, "for better or for worse" "in sickness and in health". Perhaps we both have had the wrong end of the straw!!!
Jean, Heady, Easterncedar you love your guys and no matter what, you will do anything to help them. I knew I was at my rope end when I started shouting at M and had to walk into another room and kick the wall, scream then calm down and go back in to tend to her. I miss doing that (not the wall kicking that hurt,) but the caring. I made a promise when we wed and I am still trying to keep it even though she is in a nursing home. Look after yourselves, and your guys. Best wishes Tim
Oh EC have a safe journey and hope your mum recovers.
Yes, I really do love the guy. Thanks, Tim. It really does help me to forgive myself to learn I'm not the only one screaming. Last Sunday, as we were on the mountainside, well out of earshot of anyone, I walked down the drive and screamed until my voice gave out. I was hoarse for four days, but it was a relief.
I'll let you into a little secret EC, so do I!!! Don't think I have ever lost my temper so much, as in the last few years. Even through a nasty marriage break up, (he preferred the happy juice and three legged donkeys to me!!!) I didn't scream as much as I do now! I am trying to just accept, that's the way of the world, he can't help making me angry and I can't help responding! It's this £&@@&££&@@££ disease!!!
I was diagnosed with psp early in 2013 but probably had this condition since 2008 when I was diagnosed with atypical parkinsons. thankfully my progression has been slow, although i am falling about twice a day now (controlled falls) and night time urgency to go to pee apart from these I manage OK and think that I am quite independent. I actually think that I have something called pure akinenesia with fog which is form of psp but less devastating than normal psp so hopefully your father am be OK for years to come but basically no one knows. you can omly wait and see what develops.. so good luck.
I am looking that up...probably already did but I gots the fog if you know what I mean....It's good to have a member of our family who is on the other side of this disease ie a patient.....I mean I don't want yu to have this, but as a patient you are able to give us insight...For instance when you fall, what do you feel, dizzy; a loss of muscle control; a loss of joint control; a fainting feeling? If ive asked this before , i;m sorry. Have you experienced limb freeze? and if so how do you handle it? I can tell you are you are clear in thought. But are you experiencing any dementia or periods of prolonged response?
Thank you again Steph02 for taking time to be a member of this here family.
no i don't have any dementia yet ??? FOG = freezing of gait I think that this is the main reason for my falls i try to move forward and my feet are stuck to the floor but by this time the momentum seems to keep me moving forward occasionally i fall backward but this is just bad coordination.
Bruce has just started the freezing. Even his hand wrapped around a handle is hard to remove. What to do you do to either correct it and what exercise do you use to help prevent it?
I'm so glad you don't have the dementia, and I hope you never do. My husband does. The severity changes during the day, but he always has trouble processing information. The dementia bothers him the most of all the symptoms. So frustrating for him. Do you have a U-Step Walker?
although i usually have a stick, then other times I find myself stuck to the ground and I can;t move at all Usually this happens at busy places or crossing the road. I think this is anxiety, but no drug can control this add believe me I've tried quite a few . Mental training helps when try t o clear my mind of everything but when the cars start honking their horns it just gets worse. then everybody comes around and tries t to help. so i don't Cross many roads by myself any more but on a bicycle I am ok .
My husbands symptoms worsen also when he's anxious or stressed. He takes Klonopin when we know he'll be in a stressful environment, but it barely takes the edge off. Glad you don't cross the street by yourself anymore, it would be quite dangerous do that here! It's interesting that on a bike that doesn't happen. Seems like a good way to get around and keep moving!
Hi jmkdmk,, Gosh in 6 months so hard to tell it seems like the progression is slow then speeds up for a couple weeks everyone is different when it comes to that, some have to deal with all the symptoms others get just a few, such a weird disease my brother was diagnosed in early 2014 with PSP with minor problems in 2011 something was just not right with him, in late 2014 he had a pretty bad fall hit his head split it open and a bleed on the brain so was in ICU, seems since then he went from a walker to now wheel chair bound, severe stiffness neck and both legs, coughing chocking, can't hardly talk to the point you can't understand him to being incontinent. I agree with eastercedar, wish I would have recorded my brothers voice. All you can do is your best, in joy everyday go places he likes. And most of all you have all of us here on this wonderful site such a Blessing. Nettie
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I'm new here! Solutions to bed stripping and fidgeting?
I am new here, my mum recently diagnosed with PSP.
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