My first post!!! My biggest challenge is my husbands impulsivity. He cannot wait, becomes aggressive and agitated if things do not happen immediately. He falls several times a day - many of these falls are preventable. I have a calendar outlining all events and a white board with plans for next three days this used to work well but is no longer effective.
He takes Clonazepam at night to calm his restlessness and vivid dreams, which gives him /us 2 hours at a time until 4 am when he is very restless. He needs help with washing and dressing but if I am not in the room when he decides to get up I will hear a crash as he falls from trying to stand on one leg and put pants on!!!!!!! Like having a toddler you cannot take your eyes off.
Any suggestion most welcome.....
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Tippyleaf
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welcome in the nicest way ! this site will prove invaluable, my advice is and we are way down the line is get reffered to local hospice they facilitate so much. book a double appt with a good gp and TELL him, not ask, to be reffered to OT, neuro physio, intervention team and refer yourselves to social services. it is never too early to do these things and you do not want to be crisis managing! don't take any rubbish from anyone, you will gain strength that you never thought possible! love them lots even when you could scream, also see lawyer asap to organise health and financial power of attorney, expensive but vital.
as we speak i am having a weeks respite , but this vile illness still haunts me 24hrs a day!you will have good days , fun days so focus on the positive.
Welcome to the wonderful world of PSP! This will happen throughout your journey. The minute it seems as if you have got on top of a problem, another will throw a spanner in the works! There are no suggestions how to stop falls or the impulsive behaviour, bar what you are doing, 24/7 eye on him. Even then, he will get past the "barriors" you put in place!!! S use to be able to do something "stupid" with three lots of eyes on him. Even now, he is wheelchair bound, he is still quite capable of getting out of the chair and landing face down on the floor!
You will found this site a huge help. It's certainly saved my life. Everything I know about PSP, has come from here. We are all Carers or sufferers. Everyone shares the good, the bad and ugly, nobody will judge you, all too busy feeling exactly the same.
I'm afraid all you can do is, take one day at a time! Enjoy the good days, take lots of deep breaths and talk to us on the bad ones! Don't worry about tomorrow, today will have enough challanges!!!
Keep your calendar going, you need to be extremely organised, to try and stay anywhere near normal. Get help from what ever source you can and most of all, make sure you get some "ME" time!
The impulsiveness and lack of control, the loss of a sense of time, so that waiting isn't possible, are hallmarks of this disease. I wish I had better advice, but all I can say is that this stage, like all of them, will eventually pass. We are just getting past it ourselves, and on to the next.
We had years of constant falling, and my nerves were shot from all the crashes, and listening for them, and dealing with broken furniture, smashed and flooding toilets, wrecked appliances, and destroyed treasures, not to mention broken ribs and gashed head, but now that he is never left alone and has less ability to rise on his own the falls are less frequent. It has been several months since the last disaster. He won't use the wheelchair to move about, but having it means I can transport him safely in and outside the house. It's a constant battle, sorry to say, but once you get past the point when he is able to get up on his own, your nerves will settle down! Hang on! And store away anything you can't bear to lose.
I know that I drive my wife mad with wanting to do things that she saysI can't do but she is only right half the time. You see I feel quite independent at the moment am able to wash and dress myself and send most of the days without a carer. however I do find myself falling more often and I am aware of this but I have to do things other wise I might as well give up and become a couch potato, I am 67 diagnosed in 20013 after 7 years of atypical parkinsonism . Sometimes I feel that she want wants to make me an invalid before my time is up. sorry but i think it time that some of us psp sufferers had a bit of a gripe too.
Yes, Steph02, you should, please, get a word in! I'm sorry we carers dominate the site, and really value your perspective. You are right, of course, that the risks of falling may not outweigh the losses that come from becoming a couch potato. It's a hard path, and his stubborn refusal to give up is one of the things I love about my guy, and makes our life worthwhile.
I have held my disease at bay for months and thought I could beat it with physical therapy but it is coming back with a vengeance and I am depressed. It is a shame that the pharmaceutical companies are not putting more money into a cure but money talks. I am I of 20,000 in the U.S.A. What is the estimate in other countries?
Sorry you are going through this, Jotro. Our experience has been episodes of decline interrupted by plateaus of varying duration, up to a year, with little appreciable change. I wish the same for you. Of course it must be depressing as hell. Where are you? How long ago were you diagnosed? Do you have decent support?
I have read that because the Alzheimer's researchers are trying to figure out whether the beta amyloid plaques or tau protein tangles are the major problem (both appear in Alzheimer's patients) and whether either one can be treated, psp is getting much more attention now, because it allows the researchers to focus on the tau protein alone. It seems that clinical trials for treatments for psp are actually being organized disproportionately to the population. Everyone wants a cure for Alzheimer's and there is LOTS of money aimed at that. So, don't despair!
My guy and I say that the physical therapy is to keep him strong so he won't have so far to come back when the cure is found. We can dream.
Hang on, Jotro, and keep in touch. We are all in this together. Wishing you well, Easterncedar
I am in emmaus, pa. My wife is a retired R.N. and she and our adult children are a super help as our two son-in-laws. Have had PSP for 3 years. Just diagnosed in 2015. Gym helps in that I can get up if I fall and get around better but gait is still lousy as is lightheaded feeling if change direction too fast. Going to bed or arising is also a spinning experience. So is double vision when I turn my eyes left or right. Doctor told me my driving days are over.
Words work. I do not feel so alone. I have only met one gentleman who has it. We are now friends with him and his wife. He is worse than me but he can use monosylabic words like 'yes and no.' He smiles a lot as his wife talks for him. They love each other very much.
That's sweet, about your friend with PSP and his wife. I just want to let you know my Daddy's first symptoms occurred about 9 years ago and he still cracks jokes sometimes. He feeds himself, even plays cards with the family. You and or Daddy may not ever have your vocabulary reduced to ''monosylabic'' words. PSP can differ greatly from one sufferer to the next. You may already be aware of this but I wanted to be sure, don't want you to live in dread of specific symptoms you may not ever get. Prayers said for you.
I think my reply got lost. I live in Emmaus, PA. Life is so short, even at 70. But I have had 7 decades of fun and tears. It has been interesting so I should quit complaining about PSP. The folks at the rehab gym are fast becoming new friends so that is an improvement in life. Some of them are worse off than I but they still smile and they make every day into two days of subjective time. So, actually life is still an adventure.
I still am happy. Feel a bit guilty when I am, Jotro, but it's funny how little it takes to make us content. Friendships and support - online or in person - that helps. Thanks for the update. PA is a great state.
You're in Raleigh? That's a lovely town. We're in Chesapeake VA which is beside Norfolk and Virginia Beach. Isn't Raleigh part of the tri-city area known for advanced medical practices? Also, much of our family is in or from Wilson, Rocky Mount and Spring Hope. It's nice to "meet" you neighbor!
We like Raleigh but the goods and services and support don't exist to help a working woman. But I think we do get good care. PSP is not really well known.
Well said Steph02. Thank you for posting. I know I was guilty of over protection. I said that to my sons a few months ago and one of them said, "Mum, if you weren't, he probably wouldn't be here by now". This awful condition takes its toll on everyone involved in different ways and we all have to find a way to survive or live through it in the best way possible. I didn't want to make my husband an invalid but I did want to protect him.
It's really good you want to remain independent and hope you can for a long time to come but don't be surprised when your wife loses it when you fall. It's because she loves you. If she didn't, she'd let you get on with things until you really did yourself some damage.
Steph02, Hearing you is what my husband must feel like. He doesn't want to give up or let me help him with anything that feels he can do himself. I try and let him do everything himself, but sometimes its just plain scary. His stubbornness does keep him going and I think he would be worse off without it. Probably much like you. I admire both of you for not wanting to give up, but just know we (wives and caregivers) just don't want to see you guys hurt, and it makes us feel so helpless watching the struggles that you face. Thank you for your insight!
Daddy has had PSP for about 9 years, FINALLY correctly diagnosed just last year after 8 years of it slowly getting worse. I've been one of his fulltime carers for almost a year, I live in. The first 3 months after I arrived, he was still trying to get up alone and falling falling falling. He'd be lying on the floor, bleeding, trembling, weak and tiring VERY quickly as we'd try to help him get up. IT WAS HORRIBLE to see him like that, made me feel so helpless and afraid for him. At the end of the day, every time he fell, once I was alone and everyone else was asleep in bed, I'd feel overwhelming sadness and sit and cry my eyes out. It took awhile to realize my crying fests were coincided with the days he'd taken a fall. Words can't describe how much it hurt to see him so weak and helpless and hurt on the floor. It was a relief when he could no longer get up by himself, but a bittersweet relief of course.
Yes, Yes, Yes, steph02!! Tell me how you feel because that will help me with my guy. He too is still independent (washes and dresses himself) but does fall a few times a week. He stays home by himself often but I am a nervous mess every time I leave him because I worry about him falling. I sometimes feel like I annoy him because I ask him how he is doing all the time. It is always the same answer "terrible". Maybe I shouldn't ask--what do you think? Maybe I am enabling him by helping him to stand up and placing his meals on the table but I do that because if he falls and breaks something, it will be a bigger problem for me later. I don't want to make him invalid before his time is up as you say. My guy is 68 and we found out it was PSP last November 2016. It was PD since 2012. Send advice.
I think that it must be very stressful for you like my wife, she too is scared of me breaking something when I fall. however I point out to her that these are all controlled falls and touch wood I do not hurt myself, although I have been known to break a cup or two. I think that its worth it just to keep myself independent it is not stubbornness like she says. If you keep getting the same reply 'terrible' then I wouldn't ask him so often, b
ut please don't stop because it shows an interest in him and I'm sure he knows this. good luck with your task I'm sure he appreciates it even if like me he doesn't say it
Please write often, Steph02. My guy has always been a stoic sort, open-hearted and expressive of affection, but not one to talk about his own problems or pains in any way. When he does say something is wrong I do snap to attention! But I know he suffers in silence all the time. When anyone asks him how he's doing he says "fine" or "so's to be out!" (He's a true Mainer.)
Thanks for giving your perspective, its like a double edged sword, Ben, my husband has always been very independent and I am so guilty of overprotecting him. He also gets annoyed when I always step in to help but I am terrified of serious injuries and dealing with the aftermath. The physio said he is still very strong in both legs and arms but that his balance is poor and he isn't capable of being totally independent, not what he wanted to hear! He has, at last started to accept that a few aids will help to keep him more independent and so we are looking into get what is necessary to help him do do.
Well done. I know my husband would say the same. And I so admire his determination and cheerfulness.
However its so hard for me when we agree about something and he immediately breaks the agreement. He is less independent than you are and there are incontinent issues. He's also 82
It really tests your relationship, though. I struggle with the thought that if I do everything I am restricting his quality of life.
Hi Steph02 You sound exactly like my husband. He can still do lots of things for himself and gets annoyed if I try to help. He falls a lot but up to now no broken bones although lots of cuts and plasters. Sometimes he will say to me he is not an invalid, but it is very hard to stand back and not help. Good to hear your thoughts and hopefully we cares will allow space. Take care xxxx
Thank you all so much for the advice, support and understanding. The local hospice is amazing and I do need to book OT re assessment. It is a phase and you have reminded me like all the others we will get through it. Wished I had found this site years ago read g the comments/posts feels like being with old friends who just get it. Thank you to everyone
Tippyleaf, you mention the problem with dressing. My husband has had troubles and on watching him closely I was able to come up with ideas for him to try that kept this bit of independence. It's the hotter weather now and unless we are going somewhere he doesn't bother with socks (this he really can't do), he couldn't put on a shirt because of the buttons, now I have bought him a whole new wardrobe of polo shirts, no buttons to worry him just pull shirt over his head. As regards to standing on one foot to put pants, trousers on, I sit next to hubby on the bed and if I sense him about to stand I can usually say now sit down and out your trousers over your feet and then I can help him stand to do the rest. I have learnt that giving him as much dignity as I can is paramount, goodness know this condition takes dignity with avengance.
Welcome! I just got off the phone with the Physical Therapist who mirrors your email. Even she is frustrated. When Charles had back surgery (not related to PSP) the surgeon said "I can fix the back but I can't fix the impulsivity." Isn't it amazing that a big man can move so fast.
Heady's comment about thinking you have it all in hand and then another monkey wrench in the works.
We are stable but who knows for how long.
This website has made all the difference for me. I'm happy you are one of us now.
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