My father was diagnosed with PSP in February and knowing what we now know, he has probably had it two years prior to diagnosis. His movements, speech, sleep and eyesight is affected and strangely up until this point not much falling. On a good day his speech is really good and clear however on some days we just can't understand what he is saying and it is so frustrating and upsetting for him. With regard to his eyes he has trouble keeping his eyelids open a lot of the time even though he is not tired and then conversely he sometimes cannot close them or be able to blink which makes them very dry and sore with tears running down his face a lot of the time. He also can burst into tears all of a sudden usually provoked by music but is very easily comforted and stops just as quickly as he starts crying. Recently he has completely lost his temper in what can only be described as a rage which dies down quite quickly but then he is left feeling really remorseful and upset at having shouted at us. We tell him it is not him, its this ******* disease but I just wondered if these rages are borne out of natural frustration at his situation and anger at the disease or is this actually part of the disease? I'm just wondering if anybody out there is suffering with these symptoms themselves or if there loved ones are and if they can offer any help or advice. Thanks
Where to begin.....: My father was diagnosed... - PSP Association
Where to begin.....
All all all are standard psp symptoms, sorry to say, although everyone is affected to some degree uniquely. The emotionalism takes some folks to uncontrollable laughing or crying, and out of control temper is not rare, although it is not something I personally have had to deal with. Whatever your father is displaying now is almost certain to change into something else, which is meant to be comforting - sort of. A mild antidepressant might help. We had a couple of good sessions with a counselor when my guy could talk.
Moisturizing eyedrops are good to keep in regular use.
My strongest advice is to get a regular program of speech therapy. Get exercises and do them every day. Practice commonly needed sentences every day. It is vital. Work on thumbs up and down and nodding/shaking head for yes and no, and more elaborate sign language or use of a keyboard if he is able. Start now while there is more function to save. I wish we had. The work we have done has always provided a very immediate benefit, but we started pretty late, and I think we could have kept him talking more easily if we had been more aggressive about it. It is very frustrating to lose the ability to communicate, and so lovely when a sentence comes out nice and clear!
Good luck. Hang on. We are all in this together. Easterncedar
Thank you so much for your reply. He has been given exercises to do from the speech therapists but he doesn't do them. We tend not to push him on it as on some days his speech is really clear and on bad days I suppose we can see he is struggling with the effort and feel bad pushing him. We have a time out signal for when we are asking too many questions and he is getting frustrated not being able to answer and he is always able to say yes or no or his personal favourite which is "ok" whether that means yes or no ha ha...he met someone else with PSP that had a speaking app on his iPad and he keeps going on about getting that. However we are reluctant to get him it just yet as i feel he will just give up completely and use that all the time instead of speaking. Its such a relief and such a good day when his speech is clear that i want to continue to help him communicate "normally" with us. I'll take your advice and give the speech therapist another call. Thanks so much its good to be able to chat to people who are going through the same thing.
My guy's ability to use anything like technology was lost very very early. He can't concentrate, can't see very well and lost his fine motor skills almost before we knew what was going on, although his mind is still in pretty good shape most of the time. A recent poster here recommended the lightwriter very enthusiastically. I sympathize with how hard it is to get someone to do exercises when he just doesn't want to and how reluctant you are to go for the technology. There is no one right answer to any of this, and it sounds like I wasn't telling you anything you didn't know already! That happens a lot here, too. I didn't know a thing when I first found this community, and have found it has made all the difference for us, both in the information and the emotional support. Still, it often appears that advice given is not very useful, since each person progresses so differently.
What information you are sharing is spot on, Easterncedar! I agree with everything you have said. Weec, one of the lifesavers for me has been the godsend I found in a part time caregiver. L has many years experience with nursing homes and hospice facilities, plus she was a elementary school teacher at one time. Anyway, she started "playing" games with my sister, which keeps her motivated, exercises brain function, and helps with fine motor skills. She is far more patient than I am and I think I am falling in Love with her. Lol! Seriously, she has been Marvelous and she fills in the "spaces" I can't begin to or have the time to help my sister.I don't know what I would do if I ever lose her, God forbid. If you haven't started looking, start now, trying to find adequately trained and caring caregivers to help you and your family. It is not an easy task and takes lots of time.
I think the shouting comes out of pure frustration we can only assume how bad it must be for them in reality it must be so hard and for us too, trying to understand them. I can only suggest from experience but if your Dad is interested in using an IPad for communication I would use one and teach him to use it as well as encouraging him to try and speak possible asking him to repeat what the app is saying , while he shows an interest.
The speach therapist suggested using the app with an iPad for my husband but I could not get him to show an interest he found it too difficult but if we had shown him earlier and used it daily, he proberbly would have managed it easily.
Your advice was useful and i think just being able to speak to someone who is going through the same thing is the biggest support of all. Thanks again, signing off for tonight but will now go and tell my mum and sister about this forum so they too can take comfort and offer support too.
I have read your conversation with Easterncedar...and I agree whole heartily to her wisdom and observations/. I notice that B speech is more difficult the more tired he gets. B uses a board with specific words on it b and the a;phabet. He does not use it as much as I would like but it does work. Good luck with all of it
Hi, I also agree with Easterncedar. Sorry to say my husband didn't like the speech therapy exercises or physiotherapy exercises but I tried to encourage him by doing them as well. One of the speech therapy exercises was to breathe in deeply and then breathe out singing Aaaaaaagh for as long as possible. He couldn't last longer than 5 seconds. Now he can't speak at all, he often takes deep breaths and sings aaaaaaaaa for a very long time,longer than me. We have little contests,mor rather when he does it, I join in. It's very strange how he can do it now but couldn't before.
He had all the symptoms you described except he has never been aggressive or angry before or after diagnosis.
X
Funny, my guy liked doing the long aaaaaaahs, too, although has trouble coordinating the breaths. Something about the timing being a challenge he could accept, I think. He routinely did 18 seconds or even more, with the therapist. Show off! 
opera singer! Better get him on the Voice..hahhah
Judes1 sent a reply to you that was flagged for me. Just didn't want you to miss it. Ec
Oh yea. I call this Brain Game Roulette. The wheel starts spinning, I'm at the mercy of whatever symptom or mood the ball lands on. I never know what's going to happen or for how long. I've been prescribed an antidepressant which helps with the mood swings and agitation. As for the crying... it's unprovoked and sporadic. I'm told that it go either way... crying or laughter (sometimes inappropriate). I haven't laughed in a few years... I'd think that I would take that over crying. There is plenty of advice and support on this forum... read and post as often as you can.
Your input as ever is especially appreciated, Tim. Trying to figure out what my guy is feeling is frustrating sometimes.
I would imagine it would be. It takes me quite a while sometimes to respond to questions... can be just as frustrating for us too.
oh, yes,yes, madly frustrating for him! He's so patient, it really tugs at my heart.
My dad was diagnosed about 3 years ago, and in the first two years of his diagnosis he would experience sudden bursts of crying as well as laughing. The crying was spontaneous and completely unprovoked.
He also went thru bouts of extreme anger, where he would be " raging" and would be angry at me, my mum and my sister. He wouldn't want us around him and would yell and often say hurtful things.
At times like these, we gave him his space, let him be in his room, and we would sit outside. And we'd go back after a while and he would be much calmer,Sometimes behave like nothing ever happened. It's hard to understand it but It helps to remind your self that this isn't your dad, this is the bloody disease talking. Don't take what he says or his behaviour too personally. And this will pass, it is temporary until ( I'm sorry to say ) some other symptom raises its ugly head.
We did find that an antidepressant did give him some relief from his bouts of anger.
Take care of yourself and stay strong.
Much love,
Zsha
Zsha... you're absolutely right. It is the disease. These mood swings, anger, agitation... all of it, is hard on us as the patient. Just as hard or even more for the family/carers. The antidepressants are effective on me, but there are still times he I can go from 0 to anal in 3 seconds. Don't take anything personally.
Emotions can go either way you can be angry, cry or laugh for no reason or be happy thankfully my brother is always in a great mood and he is going into 5 years of PSP, he is going down hill tho.
W, welcome I think.
The rages are the worst. Be prepared. If he is strong he can do physical damage to loved ones and his surroundings. I looked like a bartered wife for awhile which I guess to some extent I was.
Let him learn the Apple AP while he can. Like EC I wish I had encouraged the technology thing earlier in when he had the capacity to learn new things.
I wish you (and your family) patience, and calm dealing with this disease.
If you are in the states go to a CVS or Wslgreens, Rite Aid etc. and get Genteel severe dry eye gel daytime and night time formulas, and be meticulous with rinsing his eyes out each morning with a quality eye wash and applying the gell. Dry eyes can get infected so keep them lubricated. Also sunglasses are great light for sensitivity as well as a good old fashioned sleeping mask when he is in bed. As long as he is aware and is still responding who cares what he does with his eyelids right? The closed eye thing seems to be more upsetting to those around him then to him. And on outings people assume he is blind and are amazingly kind to us and no one stares or cares when I feed him etc. (he likes it better that way as well.) Bonus is you can usually pass the family dog as a service dog and bring them just about everywhere. Please everyone no lectures we all do what we can and our dog was able to be certified as he learned to perform an actual service! As for the " rages" mood altering medications can help keep him even keel and everyone in the household safe! If your Nueroligist is unable or unwilling to go that route find a qualified knowledgable pychistrist. They know all the newest medications and also ones that can be prescribed off Label. I think it is so fortunate for him thst you his family are all rallying around him. You are all on the right track and doing a great job so kudos to you all!
Love and support to all of you and especially your Dad
X Jayne GC
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