Anxious

Dad has become increasingly more restless. We just get him settled in his chair or bed and he is trying to get up. He is getting less steady with walking and his legs seem to shuffle and then sometimes he just goes down like sitting. No injuries but it worries me with the restlessness. Can someone tell me what you or someone you care for with psp is taking for this. Dad is on diazepam and it was upped in dosage yesterday. Just want him to be comfortable

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  • hi momto 5 im sorry about your dad i cannot answer the first part of your question about your dad being restless but with the walking my legs or feet shuffle at times then they freeze \ i just say stop to myself and then carry on walking it sounds like your dad has the same problem except he tends to fall or go in a sitting position perhaps if hes feet shuffle perhaps he could try the same thing as me when he knows he is going to shuffle to say to himself stop or even out loud [ you did not say whether your dad had lost hes speech yet i hope not ] well tell him to give it a go i'm just sorry that i could not help you any further \\\ good luck with that it sounds a bit stupid i know but it does work anything is worth a try \ give your dad my best wishes and i hope it does the trick please let me know if it works for him peter jones queensland australia PSP sufferer

  • I can't stress this enough- always check with your GP and eliminate causes such as infection. pwPSP tend to be asymptomatic and a UTI can be a silent menace. Other than that I can only say that most behavioural things that arise are a passing phase because of the nature of the illness being progressive. If you can elimninate infection then all you can do after that is watch them like a hawk. It doesn't last forever. When mum got like this it was nearly always infection and she would become obsessed with getting up.Some of the time it wasn't and I had to put her into care for this reason but it didn't last long-just as the home were talking about getting in a motion sensor pad the restlessness went again. In all I would say it lasted about 5 months coming and going. You can buy motion sensors that let you know if someone is attempting to stand. Then at least you would get a night's sleep instead of worrying if he is getting out of bed.They are not cheap. This is when CHC should come in to effect-when we need extra help and gadgets. But unfortunately it is not the case.There are chairs you can buy at greeat expense (£1,000 new) which titl and remove the possibilities of getting up but I refused to let mum have one as I knew she wouldn't be able to walk for much longer and that would be cruel to stop her completely in the meantime. Once they lose the use of their legs and become bed bound and needing hoists they get aches and pains in their hip joints so the restless mobility to be quite honest is a good thing in that respect.

    Dianne x

  • Hi Momto,

    In the early stages Mum would also be very restless at times, constantly trying to get up from the chair. We believe it was because before Mum became ill she was always a very "busy" person and thought it the height of laziness to be sitting in a chair "doing nothing". I have heard it said that PSP seems to "exaggerate" a person's previous personality traits (especially, it seems, the not so nice things such as aggression, short temper etc).

    Maybe you can give your Dad little "jobs" to do while he's sitting in the chair to keep him busy.

    With the progression of the disease you will probably find it becomes less of a problem, as we have with Mum, because she now cannot stand or take weight through her feet at all and has to be hoisted from bed to chair or commode :-(

    You can buy a pressure pad alarm to alert someone that he is trying to stand, which may help to prevent some of the falls. Also, maybe a referral to Physiotherapy for a walking aid assessment would help.

    I hope you find a solution soon

    Take care

    Love

    Kathy x

  • We bought a drive way chime. It runs off batteries. The smaller one one is mounted at the end of his bed. His bed is close to the wall and there are support bars on the wall so if he gets up he can hold on to them. Once he gets to the bottom of the bed the chime goes off on the other devise which we keep in whatever room we are in, it is small and portable. It is made from bunker hill security. Driveway alert system. I got it off eBay and it was pretty cheap and works fantastic. Works up to 400 feet . We know right away if he is out of bed then and it has prevented falls. It's when he is sitting in his medical reclining chair and needs to use the bathroom( he has a catheter and we monitor it constantly so I know he doesn't have an infection) that he is shuffling. He is in last stage and today his legs gave out on him and I caught him. I knew this was coming that he wouldn't be able to walk but it is still hard to deal with when it happens. He is only saying a few words now. I hate this disease!

  • The alarm equipment and sensors mentioned by the others should not need purchasing if you live in the UK. A referral to a Telecare Service , normally associated with your local Social Services and accessed via a referral from a social worker or OT or sometimes you can refer yourself. Falls detectors, motion sensors, pressure pads, carer alarms, etc. are all available on loan for free.

  • That is nice when they provide it for you. We live in the states and the VA has helped with a lot of stuff for him. The rest we have purchased. He will have hospice soon and then anything he needs will be provided.

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