My Mum was diagnosed with PSP in Feb this year after a few years of falling backwards! Mum fell down the stairs and broke her back and multiple ribs she was eventually referred to a Neurologist as they had noticed she had the eye movement where she doesn't have control over her up and down movements and it was then when they diagnosed PSP. Mum has to walk with a zima frame to the toliet etc and we use a wheelchair when going out. So does anyone have any ideas why she gets so tired when going out to the shops in her wheelchair being pushed by us, Mum is tired for the rest of the day and the following day, with no energy at all, Mum sits in her chair all day mainly as it is to tiring for her to go anywhere. Before this horrible illness my Mum was very active, happy and chatty person now she seems to have deteriated so much and has gone quite and she says her voice sounds different when she talks, we keep reassuring her that she sounds the same and not to worry and all we want to do is help her have as normal as possible life.
I just want my Mum back X I just want her to be happy, I am so frightened about her future and what will happen to her and how much she will actually know, we don't know what stage Mum is at with PSP. I have read a lot of information on the PSP website and I am so worried about my Mum. Mum lives with Dad and he isn't coping either but doesn't say! Mum goes to a day centre 1 day a week but only goes when she feels like it which isn't much as she is so tired the day after, but it gives Dad a break! I go every day and shower her and clean the house to help out, but just would like some advice how we can make her life happier and easier for her. Please can anyone give me any advice?
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JanStott
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You will find that as PSP progresses your mum will continue to go through various changes and stages and one of these early on, is the tiredness. Our brains are taking in lots of information continually but because the PSP/CBD brain doesn't function as efficiently as it normally should, it slows down to process it all. This of course takes up a lot of time and energy, hence the tiredness. You may find too that although she seems to enjoy having the family or friends around for a chat, later or the following day she will more than likely be exhausted and very sleepy. This is how it was for us.
You say you have read a lot on the website about PSP but if you live in the UK have you actually joined the PSP Association? They will send you their very informative Carers Information Pack which will tell you all you need to know; the various stages and the symptoms your mum may come across in the future and lots more. It's FREE to join by the way, if you are the sufferer, a carer or family member. You will also be advised of your nearest PSP Support Group and be put in touch with one of their PSP Specialist Nurses who you can call whenever you need to chat or ask advice. My husband had PSP for 7 years (or more) before sadly losing his battle with PSP earlier this year and their support was a tower of strength to me during the long journey. I cannot praise them enough.
I found too that by being forewarned was to be forearmed. By finding out as much as I could about PSP the less scared we became. It is rather horrifying at first and yes and you will probably go through a period of grief, bitterness and anger. Eventually you will tire of that and just want to get on and meet obstacles head on. 'Know your enemy' became my motto. From then on Richard wanted nothing kept from him - and it wasn't. Together we fought the battle. Remember your mum will know exactly everything you say even though sometimes she won't necessarily respond. Her brain throughout remains mainly intact - if perhaps a little slow - it's just the body that doesn't work. I always involved my husband in every discussion we had with nurses, doctors, and other health professionals and I always asked his opinion. When he did lose his speech I could always get a Yes or No answer from him, by a thumbs up or down.
Try to get your dad to talk about things. He may be in denial and just bottling things up. I am sure he will cry but perhaps he needs to. Bottling things up will make it worse. Find out about more help from carers for when your dad feels he needs more help. Carers can be arranged to come in and help with showering and dressing your mum. Also when your dad needs more time for himself, a carer can come in to sit in with her and he can go and do whatever he wants - even if it's to just visit a pal for a natter or to go for a pint.
If your mum has a Social Worker she will be able help with advice on this extra help at home and also and Occupational Therapist can come and visit to see if your mum's disabilites can be helped in any other way such as more hand rails, bath seats, mattress alarms for her bed or chair; etc etc. Trouble is, YOU have to learn to ask for everything, otherwise you don't get.....
Remember, there's lots of us out here who are willing to listen if you want to let off steam, or we can perhaps offer advice if we can. You are not alone.
Such a sensible and informative answer to the question, Maggie and very sorry to hear of the loss of your husband to this awful illness. Like you, I prefer to know as much as I can about what to expect. My husband was diagnosed just over a year ago, (3-4 years symptoms noticeable before then), and like you say, things seem to go in stages.
I have found that when we are in the company of more than two or three people, Tony struggles to keep up with the conversation as his brain doesn't work quickly enough. As a result he just sits and listens. He understands what is going on around him but he describes it as having to decipher all the words, one at a time. I know this really tires him out. Also, everything he does seems to be done in slow motion which can be frustrating for him, equally so for me and very irritating too, but I remind myself that if he had a choice, he certainly wouldn't choose to be like this.
Jan, you must do as Maggie suggests and ASK for help. The first place to start is to join the PSP Association. They are really helpful and are prepared to both listen and to answer any questions.They also offer lots of helpful advice. Like all of us with loved ones with PSP, you will have good and bad days and when you least expect it, something else will crop up to test you that little bit more. Fon't forget, we are all in this together and if you need to offload on here, we really do understand.
Good luck on your journey and love to both your mum and dad.
I enjoyed both responses to Jan's question. Hit the nail right on the head! My Dad cannot handle more than one or MAYBE two people in the room. I believe that PSP patients get confused trying to keep up with the conversation and confusion as my Dad would say!
Dad mostly sits in his lift chair and watches tv. If he has to go for an appointment or whatever....that one or two hours he is out will exhaust him for a day or two!!
I think that Dad has been ill for about 8 years, was first diagnosed with Primary Progressive Aphasia, but a second opinion six months later (after developing eye problems, not able to look down or up, rarely blinking) gave us the right diagnosis of PSP.
On some level, it was finally good to know exactly what we are dealing with. The uncertainty and guessing was driving my Mom insane.
We arent sure how much Dad understands, he never says. Personally, I think he doesnt want to know. For now, whatever works for him, is fine with us.
Good luck with your Mom.....its a vumpy ride, but I have found solace in reading these blogs and questions!!
I can't say much more than Maggie and Suzie have they have hit the nail on the head so to speak. It is such a terrible condition and as they others have said for me too knowing as much about it as I could, really helped, not only me, but dad and then the many professionals you come into contact with who have never heard of it.
Please take care of yourself as sometimes it is so easy as carers to forget about yourself. Push for as much help as you can get from health and social services for you and your dad as carers and your mum.
We're all here to listen when you need to talk.
Love
Lesley x
Hi Jan
It seems to me that everyone has a different experience with PSP. Although some symptoms are similar they seem to affect people in different ways. My husband was also very active both in mind and body like your Mum and like your Mum he loved and enjoyed life. I was my husband's sole Carer for seven years and I have come to the conclusion that his lack of enthusiasm for things was because he could no longer participate in anything in an active way like he used to. This is bad enough for anyone but particularly so when one has been very active in every way. It takes infinite courage and determination on the part of the Carer to encourage them etc.
As for knowing about the future I am glad that I didn't. Over and above looking after my husband I would have dreaded the future and what it held. I plodded along as best I could and coped with whatever came, when it did.
When I look back on those seven years I am happy in the knowledge that I did my very best for him. That's all any of us can do.
One of the symptoms of PSP is involuntarty eyelid closure which can give the impression of sleep or disinterest which is not always the case. However It is common for people living with PSP to be tired after going out or to an appointment and important to plan a rest day in as necessary.As the disease progresses things become more effortful including movement and speech. It is difficult to adjust to these changes especially if the individual was previously very active. The adjustment is difficult for the individual but also for those around them. These changes are part of the sad loss in this illnes and support like health unlocked are important. Also join PSPA and try a support group and talk to your specialist nurse, if you havent already.
I am 100% behind Lina, this is exactly the way I feel and am dealing with my husband and PSP! Although, I do think we should be aware of what will eventually happen and the path along the way, from what I read on the forum, it seems to me that the severity of symptoms vary and they do not necessarily all present at the sametime.
At the moment, my husband is still active up to a point, he eats and drinks well and is not in a wheelchair. I think his sheer determination and will power are keep him going, and yes, he gets tired and all the other things mentioned and we deal with this as and when. He has good days and bad days. But, he's on davuentide, starting his 4th week, no real signs yet but, nil desperendum, where's there's life, there's HOPE!
It's not easy, few professionals - be they doctors, nurses, occupational therapist, you name them, know anything about PSP, but they will when we spread the word.
Like everyone says, join the PSPA if you can, and get a social worker. The specialist nurses are fabulous and are on the end of the phone for advice and support. My mums social worker organised care in the house and eventually residential nursing care.
It is hard. There is help- use it if you can! And look after yourself too
Hi Jan, like you we are a family fairly new to psp. We joined the PSPA as soon as I realized it was the only organization available for help and support. They give so much information that all my initial questions were answered, but I had enough information to start asking for help, help I didn't think would be available to us yet. Knowing the potential of what may happen does as both Maggieh and Suzie Q say for arms one.
I agree with everyone else the first responses you received from Maggie and Suzie were very comprehensive.
It is so awesome to see so many people answering and supporting each other! I so wish I had found this site a year ago.
I know Jeff gets exhausted now within an hour. Sometimes just having his walker take him around the block in his wheelchair leaves him burnt out for the rest of the day. When ever we have to spend a day doing doctor appointments or errands and visiting, he is off for 2 to 3 days after that. He always complains about not sleeping at night but he also suffers from sleep appnia. Poor guy is constantly exhausted now and sleeps on average, 16 to 18 hours a day. He can't stand on his own, can't get to the toilet on his own, can't bathe on his own so he is completely reliant on the nurses in the facility.
In January of 2011 the doctor said that he had 6 months to 2 years to go. Jeff has had an incredible life of adventure, business success, and a lot of love. It is absolutely gut wrenching to see him shrunken and bent over in a wheelchair with nothing to look forward to.
To all you that are care givers, PLEASE look after yourselves as well. The emotional toll and the shear physical expenditure of energy can sap the life out of you. For the 7 months that Jeff was with me I was always on the go and always exhausted. I would not have changed anything and feel so blessed that we had the time together. It was the decision of his kids to get him into a facility and out of my hands. I see that he has declined even more rapidly since he has been there. I call him everyday but even a phone call seems to tire him out some days. I still tell him everything that is going on even if he doesn't respond.
This is an awful condition made worse by the fact that the sufferer knows whats going on and can't stop the progress!
Thank you so much for all your very good wishes and informative replies, I have joined the PSP Association and have been to 1 support group with my brother and we are going to the next 1 next month! I am just waiting for my Dad to drop Mum off for the day as he is going to a model railway exhibition in Manchester one of his many hobbies, which is great for Dad to still be able to do, it also give's Dad some time to himself so I will come back on here when I get a minute to talk some more!!, it is nice to know we can talk to everyone on here and get advice and experiences of what to expect and prepare ourselves for, Thank You all very much xx
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