Hello all, my father has been diagnosed with PSP. We think he's been suffering with it for around 5/6 Years. Any nutrition tips to help us?
He's suffering with constipation and also lack of appetite. He very rarely moves anymore unless for a hospital apt or to use toilet. We are heartbroken and just want to take care of him.
Sorry to hear that your poor dad has been diagnosied with PSP. My grandpa has it and sound like they are at the same stage. I can say that if your dad tries Laxilose (tastes horrible) but works a treat. It wont have your dad running to the toilet but will make things a whole lot easier when he does. If you speak to your GP they will prescribe this and the dose to take.
Thoughts are with you and your family.
I'm also very sorry to hear about your dad, a great tip I was told for constipation is prune juice or prunes. Movical and laxilose can still be mixed with diluted orange to get rid of nasty taste
Sorry I sent that with out finishing. I'd say he's loosing appetite because he's probably fed up.
Is he not moving because of mobility ? If so you need get onto OT and get a wheel chair sorted and get him out of the house try and do something he used to enjoy sending you my love xx
Thanks so much for taking time to respond. It's heartbreaking. He just sits in the armchair at home. I feel like he's at that bedridden stage to be honest as he doesn't move at all. We ve tried taking him for walks with his frame and even taking him out in the car for a change of scenery but he just doesn't enjoy any of it. He's so anxious and this just builds his tension. I will broach the wheelchair subject and see how he responds. His blood pressure is sky high ( just in recent months) so we re aware of not pushing conversations and stressing him out. We love him so much and just want to make sure he's living and not just existing. Lynn have they said what stage your grandpa is at?
It is mobility that is limiting movement but I'm sure that his mood doesn't help.
So nice having people who understand to talk to xx
Just reading some of your comments, try and have a positive attitude around him I was a full time carer for my friends father who we sadly lost last week. I become so attached I felt like I was caring for my own father.
I suppose everyone is different but I was always so positive about everything, and honest too.
the wheelchair was hard as he was a very proud man but using the wheelchair we managed to get out of the house a couple of hours a day be honest it is hard one day being able to walk and in a few months its a struggle but he cant give up he still has a loving family and a life and needs to make most of it.
We also had the recliner chair and something called a rota stand which was very good for him supporting him self getting up and transferring onto wheelchair or commode. Have u got any help at home? I know the GPS are so rubbish with this as its so rear.
your the first person I have responded to on this and I will try and help as much as I can x
Thank you so much Christina. Your words are so touching. You're so right about us staying positive. Had a lovely chat today with him today and we talked about eating and drinking and addressing it all rather than hiding from it. Can't believe that it wasn't long ago that I'd never heard of PSP and now I'm eating sleeping breathing it. Thankyou for taking the time to think of us when you're hurting yourself. Hope happy times you shared are helping you through this awful time x
My husband always has prunes and dried apricots with his breakfast to help with constipation,He also eats Liquorice Allsorts so he only ocasionally needs laxatives.
I puree his main meals as swallowing is a problem . The speech therapists have been really helpful with this. I find apathy is the biggest problem , we try and go out as often as possible to the cinema, theatre where there is easy access for the wheel chair, our GP's advice is to do as many things as possible to keep him interested in what 's going on around him, but it's not always easy.
Thanks Kathryn, I know he's been having prune juice this week and dried fruit so will be interesting to see if there's any improvement. The sadness is so hard to see isn't it?
Do you have an specialised equipment at home up help day to day? Bed? Furniture etc. This is all new to us so we re trying to learn as much as possible especially as the doctors aren't very helpful. X
Dani, Some equipment we have for my PSP wife are a wheeled chair that is not the traditional wheelchair. It has four much much smaller wheels than the traditional chair. I use it to move her around the house instead of the full/regular wheelchair. Perhaps not having the stigma of "wheelchair" with this other chair would help your loved one. If he can walk there is an excellent walker called a "U Step". It is more sturdy than the normal Rollator walker. Also with U Step if you let go of the handles the walker automatically stops where the rollator you have to apply the breaks. This method of braking is much more safe than having to apply the break in time if you are falling. U Step walker doesn't move unless you squeeze the handles and if you release them it stops. I order many things for handicaped people from a site called Gold Violin. They have many things from bibs to incontenance things and much much more. Hang in there and do the best you can.
We have bought a rise and recline chair which helps and have , provided by social,services, two walking frames, an extra rail on the stairs, a bath lift but , apart from that have managed with normal furniture etc.II am sure that in time we will need more specialist equipment but for now are trying to keep things as normal as possible
Kathryn, thanks for mentioning this we have one also. Medicare paid for part of the cost.
Thanks Kathryn, how long has it been since your husband was diagnosed?
Sorry to hear that. My father was diagnosed with PSP 4 years ago,but the disease must have started years earlier. Because of the swallowing problem, I give him every morning Greek yoghurt with squeezed pomegranate and honey in it. That helps laxation and brings down blood pressure. What mood is concerned, stay close to him because that might reassure them, play music he likes,...
Is using a frame not dangerous (backwards falling) ?
He's been giving a frame by his physio, it's more like a tripod thing which is weighted at the front. He loves music so will Defo do this. He's never eaten yoghurt in his life but seemed up for it when I mentioned your reply. Thanks so much
* given not giving
Dani, My wife has swallowing issues. Taking pills with yogurt works great.
Thanks great tip, will help especially if he finds that he likes yoghurt
So sorry to hear about your Farther's diagnosis, its just devastating isn't it. My Mother was diagnosed with CBD earlier this year. Like you I would like to take mum out and do things with her to give her a better quality of life but she gets extremely tied and shows no interest in going out, even in the wheelchair. She also suffers from IBS, this could be one of the reasons she no longer wants to leave the house. Like your Dad her appetite is poor and she's loosing weight, she wants to remain independent and feed herself but was leaving most of the food on the plate. I thought this was because she'd had enough food, then I heard her tell the Neuro Physio that her arm was tired so she was just giving up. Now I let her eat what she can and just offer help at the end of the meal, she seems happy with this. I'm constantly thinking of things that would make mums day a better one but she sleeps so much and seems happy just watching TV.
We live in Manchester UK, the OT have been very good providing equipment, hospital bed, slide sheets and various other things. The bed and slide sheets have not proved helpful at this stage as Mum feels shes sliding down the bed, she just wasn't comfortable with them so I've taken them off for now, maybe they'll prove useful in the future.
People say live for the day, I get what they mean, if nothing's going badly wrong, then it's a good day, so make the most of it. But when there's nothing occupying my mind my head floods with thoughts of the future and all that bad things that could happen. It's so difficult to shake these thoughts off. Wishing you and everyone with PSP and CBD well and hope you are all having a good day today.
Hi Jay, thank you so much for messaging. Can relate so much. It helps just hearing we are not alone. Know exactly what you mean about 'good days'. So hard knowing what to do at times. We did have the attitude of being cruel to be kind a whole back and ' making' him leave the house , hoping that he'd enjoy it once he was out but have decided not to go with this. Speaking to him today reminded me that he is still himself and he is fully aware of what's going on, despite his appearance. He's got a better memory than most of us, which makes it hard to bear sometimes BUT today was a good day. Hearing from all of you and being able to provide him with helpful bits of info. The tip on feeding is fab. Will bear it in mind. All the best, thinking of you and your mam x
Hi, Yes fatique in a part of CBD and PSP. My wife gets very fatigued and takes a two hour nap in the afternoon. No nap and she is a basket case in movment around the home. She is in bed by 9:30pm each night. I'm lucky that she doesn't mind me feeding her and helping with her beverage when in a restaurant. If I see she has left food in her bowl after a meal I offer to give her some bites and she is ok with that. Try as hard as you to not WASTE your time worrying about what is coming next or what stage your Mum is in. I view it as non-productive to worry when you can't control the future much with PSP patients. There is a scripture that says basically "Don't worry about tomorrow, each day has enough trouble of it's own". Paraphrased. Just know that you ARE doing your best.
Thanks Jimbo. I think ill be sharing that motto with my family. Our new mantra x
Thinking of you, and hoping u have many, many, many good days xx
Thanks Christina, me too xx
A good balanced diet will help your Dad as well as the other suggestions in this thread. It can't hurt to tempt his appetite with a few treats now and again too. If you are in the UK do get in touch with your local Occupational Therapist (via your local authority) as they will be able to offer solutions for mobility and other issues. Mum currently has a hospital bed, hoist, commode and a custom made chair, as well as a wheelchair with a custom back. Previously we were given a riser/recliner chair, a rotastand, and other equipment that is no longer helpful due to Mum's worsening mobility.
I would say persist in taking your Dad out, even if it doesn't look as if he is enjoying himself. A change of scene is good for all of you and sometimes it is difficult for a person with PSP to show how they feel. Maybe just sitting in the garden (when it is not raining of course!) would be a starting point if your Dad gets anxious about being out in public.
All the best
Thanks H! Will get on to OT first thing. We really need their support providing us with the stuff which will make life easier for him. Did it take long to get stuff actioned with your OT?
A lot of the standard equipment comes very quickly. The custom made takes a little longer as it has to go to panel for the funding to be agreed before it can be ordered. Having said that we have recently taken delivery of a T cushion to use at night to help maintain a gap between Mum's legs and, although that too had to go to panel, it was delivered in under a month and in the meantime we were supplied with an alternative.
Hi Dani15, I don't know if this helps but my husband who is the ninth year since his diagnosis also felt anxious when going out. It turned out that people made him anxious because he found it more difficult to walk. Having others close to him made him feel vulnerable. He also found hallways, corridors and even shopping malls difficult, these places seemed to impact on his ability to "Get started" and continue walking. He always felt at risk of falling. Being in a wheelchair, which he hates, lessened the feeling for him so we use the chair as and when necessary. Regards Denmob.
Great tip. I asked him about a wheel chair today and he hates the idea but I really feel its worth a go. He's afraid that once he's get in it that will be it. Just tempted to get one and take it along with us so it's there of he gets tired.
We have noticed that he's much more anxious in a crowd also, even when we have visitors at home.
Thanks for messaging.
Hi Dani15....my mam was officially diagnosed with PSP last year but we suspect she has had it for 2-3 years. She has great difficulty walking (uses a walking frame) has trouble swallowing and the problem which causes her the most distress is her sight. She cant at this stage make out what is on her plate not to mention any kind of reading. Its such a cruel disease which takes away every scrap of dignity from our loved ones. We as carers can only do our best to make the load a little easier to bear but it is heartwrenching x
Thanks nansh, I know. I'm feeling angry that people don't know what PSP is and yet it's taking my dad away. It's so cruel. The grief we re feeling is unreal but trying to remind myself that he's still here. Kissed him today up remind myself. Why is life so cruel. Xx
* to remind
Our best wishes to you on your journey. Your Dad and you have paid the dues and it's now payback time - I hope he feels he can accept all the help offered without any feeling of "charity". Tony was helped with:
Movicol seems to be the preferred laxative in our area
A wheeled commode with a seat made a useful chair for getting to the hall where the wheelchair was kept (narrow doorway to his room)
Hospital bed with air mattress (helps prevent bed sores)
Wheelchair from the local hospital service - with raking back for comfort, and long-leg seat
"Nosy" cup (cutout so he could drink without having to tip his head back) via SALT - Speech and language therapist - who also provided good advice on swallowing/food consistency/thickened drinks.
Dietitian - again with food / consistency / drinks etc - they worked well together as part of the Community team
The subject of PEG feeding was discussed fairly early and Tony adamant he didn't want it.
Ramp for wheelchair access to get to the dining room to be part of special meals such as at Christmas - we have steps in awkward places and he usually had meals in his own ground floor room. Fortunately access to the street is straight out of the front door on to the pavement and Tony did seem to enjoy being part of the outside world when we went into town. Even though your Dad may not say much, he can still hear and take everything in, as you have found.
As well as the Physio, the neuro physio understands more of the problems
District Nurses helped with day-to-day problems and you may have access to the Specialist Nurse(s) who deal with Parkinson's etc. Tony's GP was sympathetic, took an interest in an unfamiliar problem, and would attend when necessary and prescribe antibiotics for the inevitable chest and urinary infections (catherised).
Hydrotilt chair - not the normal recliner/lift type but more like a cross between a rally car seat and an armchair, on wheels, and the whole thing was tiltable backwards for best positioning for eating (and sleeping), and so comfortable. It was specially made to fit - obtained through the OT - and make every effort to be assessed early for Continuing Care (where the NHS picks up the bill) so that if you are turned down and reapply, the progressive nature of PSP clearly shows.
Respite care - because our bathroom was not accessible, Tony was collected by taxi once a week and went to a care home in a nearby town. When the time came for him to go into care permanently the staff there already knew Tony and his needs, and he was familiar with the surroundings. You will also need the break.
Our local hospice provides a home sitting service - towards the end they were able to give us a couple of hours once a week.. This means you can do what you need knowing there is a nursing qualified person with him. In the early days Tony went there once a week to their day centre - again they collected and returned him. This would give you a break and help stimulate your Dad and give him something to tell you (it must be awful to lose your independence).
Standaid for transfer between chair, commode and bed.
Local care provider - usual problems with overworked carers, short staffing etc but there may come a point where two (stronger than me) people are needed for transfers for safety, and they do give you that few minutes' respite to free you up to spend more time with your Dad later
Music - TV - radio - to keep Dad in touch with the world and provide a distraction, and you can discuss programmes. Also he can choose progs, giving him some control of his life. Losing that control is frustrating and depressing
If there are any children around (family or other), hope for the future can help to lift a mood of despair about the present. (We don't have any grandchildren so have to "borrow" other people's!)
Both Powers of Attorney set up while Tony was still able to sign his name adequately so our son and I were able to take the necessary personal welfare decisions. (Although I was already having to deal with our joint finances, the PoA made it "official" and the authorisation is there if the bank, say, needs a piece of paper)
Sorry this is a bit long but hope some is useful.
Two other things I forgot - an overbed table makes life easier and a "zimmer frame" without wheels for Tony to hang onto for balance during transfer in the early stages.
Hiya Wifemo. Your info is invaluable ! Thanks for taking the time to message. Will speak to my family about all the info you've given us. Take care x
And another - Tony had been a cyclist in his younger days and the neuro physio lent us a set of pedals which he could use while in bed - helped his leg mobility and, we think, against constipation.
Another thought - I've recently discovered that Marie Curie are able to offer home sitting respite for conditions other than Cancer, usually MS or MND but they may be able to help.
Best wishes - Mo
My dad has PSP, diagnosed about 5 years ago.
Movicol seems to ring a bell for the constipation, and he also drinks prune juice.
He's really bothered with dry eyes, at one point we noticed that he hardly ever blinks. He had various gels and drops. It's all trial and error as the original gel was really no use during the day as his vision seemed to be blurred for ages, so now he has liquid drops which he uses during the day.
For drinking - he finds it easier to have a cup with 2 handles.
I found a channel on youtube really helpful - it's called CurePSPHowTo. It contains lots of videos of how to make every day things easier.
One of the things we adopted from there early on was from the Making Eating Easier video. We started off using a large biscuit tin or quality street box and put a rubber placemat on the top, to raise dad's plate up. He found this much easier. Then a family friend made him a little square box from formica covered chipboard and the rubber placemat goes on top of that. It serves the same purpose as the tins but fits the plate better now.
Wow azil, what amazing tips especially with that about you tube!! I'll have a look on there. Thanks so much. It's so comforting to speak to people who have been there and have found things that make a difference. X
Hi Dani, my dad has psp, he was diagnosed a year and a half ago, but we believe he has it for around 3-4 years.As mentioned, Movicol is a good solution for constipation, we use it in my father's water usually and it works.He has swallowing issues especially with liquids, so we use a thickener which i believe it's the most necessary thing in his daily life.The only thing you should have in mind is that Movicol "dilutes" water, so we use more of the thickener when his water has Movicol in.My dad also sees a speech therapist and her help is valuable.I believe his swallowing problems would be much worse without the speech therapist.Apart from this, the phycological benefit is huge, it's important for the patient to feel that he is doing something and it works his mind also.We try to "fill" my father's time and we found out that board games is a pleasant activity.Sometimes it helps when my father is anxious and you can play for quite a bit.Of course, i don't mean complex board games, we play simple one, you just have to drop the dice and then go forward or back some blocks with your pawn.I wish you and your family the best, John.
Thanks John, fab advice about the speech therapist. Learning so much to help my dad. All the best to you and your family too
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