Strange Symptom

[Skye]

Those of you who have followed my threads about John's walks (and falls!) will know that I have agonised about John's liking for going for long walks, and my own worries about him getting lost, of hurting himself.

There is a new thread running on the PPA forum which indicates that the desire to walk is a common symptom of PPA sufferers. Several people have responded saying they have found this.

It had never occurred to me to link the desire to walk with PPA. It seems very strange to me, but it seems to be well documented.

There is so much we don't know about the workings of the brain.

Just a curiosity I thought I'd share with you!

 

[Grannie G]

Isn`t it interesting Hazel.

Dhiren likes to walk, always has, and even though he has lost stamina, he occasionally goes for very long walks too.

But he doesn`t have PPA, to my knowledge.

When he goes out, he often says he feels claustrophobic.

 

[Skye]

I'm wondering if it's a symptom of FTD generally, rather then specifically PPA.

Anyone else encountered it?

 

[CraigC]

Hi Hazel,

Dad always liked to go for a walk, but he's really been on the move ever since he had Alzheimer’s. In he early stages he would walk for miles around Bournemouth, he'd be gone for hours and hours. When I went with him it was hard to keep up.

He would also wander the house for ages and ages as if he was on a mission. Things have not changed in the care home; he spends most of the day walking around until he literally tires himself out to exhaustion. I've noticed many of the other residents in the care home who like to walk/wander particularly if they are a little agitated.

Dad has moved to a new care home and had a couple of falls lately. I'm guessing that the change in routine and environment has caused this as he seems very (understandably) disorientated.

But the advantage of this is that he still very fit and incredibly strong. The real shame is that dads’ failing eyesight is making it harder for him to walk now.

Just some observations
kind regards
Craig

 

[Skye]

But the advantage of this is that he still very fit and incredibly strong.

Not always an advantage, Craig! John's also fit and strong, and 6'2". I have to wash dress and shave him, and clean his teeth. Not easy!

 

[Grannie G]

This has brought back memories of my mother, who never walked anywhere, until she developed dementia.

Once she lost her licence, she walked all over the place, and when she went in the home walked up and down the corridors continuously.

 

[CraigC]

Agreed hazel, it can make life difficult sometimes! It has improved my negotiation skills though. ....

Another reason that I like to take dad walking is he really appreciates fresh air. It is such a simple thing but I love to seem him taking in the fresh air as if it is the first time he's been outside in his life.

Kindest regards
Craig

 

[Skye]

Agreed hazel, it can make life difficult sometimes! It has improved my negotiation skills though. ....

Agreed, Craig! Fortunately aggression is not one of John's problems, otherwise I'd never cope.

Yes, it is lovely to be able to go out for walks. I'm just sorry that I no longer have the confidence to let him go off on his own.

Cheers,

 

[Nell]

Mum is not a walker but I DO see lots of people in the NH walking, walking, walking all day!! This explains it. Thanks Hazel!!

 

[KenC]

Hello again,
Looking at what skye has written is very interesting and I think it is quite common among many people who have Dementia etc. I think we feel the need to carry on walking to see how many intersting things we can spot while we can get around. I suppose we also feel at ease with nature, and I must admit that I have noticed more things since I was given the medication than I did before and I can not work it whether I am more aware than I was or whether I have more time to take things in. But like others I feel that I must get out as often as I can, otherwise I feel like a caged lion. I have one major draw back with walks these days, and that is I am more sensitive to certain noises, and sometimes some noises can be quite distressing espicially trees in the wind ( which sometimes spook me ) , so I tend to steer clear of them when it is windy otherwise I end up going home faster than I want to.

I am sure that John gets the same pleasure out his walks as I do, and believe me its wonderful


Best Wishes

Ken

 

[Westie]

Peter also walks incessantly. He has FTD.

Unfortunately, unlike Ken, he doesn't seem to get any pleasure from walking - it is just something he appears driven to do. He walks at a frantic pace and often returns sweating profusely, even when it is cold.

His only comments about the walking are that it is something 'to do' or that he needs to walk. If I try to prevent him walking at an unsuitable time he gets very agitated.

 

[Lila13]

My mother always did like going for long walks alone, especially in the dark (early morning or late at night). She'd go over the common in the middle of the night (where I wouldn't go alone even by daylight) and break up bottle fights.

Dementia increased that tendency, and also our awareness of it, because before she got ill of course she had a right to walk whenever and wherever she liked, though my father tried to make her promise to stop. It started when we were children, and we often didn't know she'd left us alone in the house, I'm not sure how much of that would be regarded as neglect, if anything had happened to us.

 

[jc141265]

Interesting! I always thought Dad's walking, walking, walking was something just peculiar to him.
He can't feed himself, dress himself, stand up by himself or sit down by himself, but once you stand him up he can walk and even before he lost all those other abilities he wanted to walk all of the time.
He will happily walk up and down the same corridor...Dad also has this thing where when he reaches one end, he lifts his hands and hits at the wall like a peson doing laps, so much so that I do it with him now...we walk up the end and both raise our hands and give a little yell! <giggle> And then we do it again when we get to the other end!
I'm constantly bemused about how he manages to walk so well when he can do nothing else!
My family has often wondered about it, and we often thought its almost as if he gets comfort from it, and it seems to help him to think clearer.

Thanks for the post, now I know its something that other people do too.

 

[Margarita]

My mother was always a person that love walking getting out even before AZ anyway .

So I always perceived it also that is how my mother must of felt .

ken But like others I feel that I must get out as often as I can, otherwise I feel like a caged lion.

But just caged in.

Then when her spatial awareness was affecting her so much , that she could not go out in the street alone or even with me , because she fall. so would wonder walking around the house, she would not fall in house because she felt safe , but can only imagine how bored she must of felt

that why I push so much to get my mother into AZ day-center , then further along the line of time to SS daycentre to keep her busy, as buy that time all she would do is sleep , so I thought pushing for more day center days would give her something to do and something to look forward to do

 

[Skye]

Thanks for the link to the factsheet, Nada, it's very interesting.

John doesn't wander aimlessly, and he doesn't wander at night. I think his problems are boredom and surplus energy.

People often walk about if they are bored. Many people with dementia simply do not have enough to do. Being occupied brings with it a sense of purpose and self-worth for everyone, and people with dementia are no exception. Try to find ways to keep the person mentally engaged and physically active, whether through playing games or involving them in your daily chores and tasks.

Constant walking may also indicate that the person with dementia has energy to spare and feels the need for more regular exercise. There are many simple ways to incorporate more exercise into your normal life without making big lifestyle changes. Try walking to the shops rather than driving, walking up steps rather than using the escalator, or even doing some gardening or vigorous housework. Try to leave the house to get some fresh air at least once a day if you can.

I think the problem for people with PPA is that conversation is strictly limited, TV and newspapers no longer make sense, time is meaningless, and yet other parts of the brain are still fully active.

Since I have stopped him walking alone, he now starts wanting to go to bed as soon as he has had lunch -- not for an afternoon nap, but for the night! I'm now re-considering letting him go out again -- maybe without Skye, although I don't know if he'll accept that!

I know how he feels, it's finding safe solutions that is the problem.

 

[Westie]

Hazel,

I have the same problem with Peter. He has no interest at all in TV, radio, newspapers, books, conversation, games, hobbies, chores (they are for me to do!!), gardening. In fact I'm at my wits end to try to find him something to do. He is desperately bored but totally unable to do anything about it.

Walking is the only thing he will do, but is not interested if the whole family go for a proper walk. Then he just wants to go home. I have stopped him taking our westie out with him as she is so obviously unhappy about going with him.

I tried to stop him going out walking yesterday evening at 11.30 (about 7th outing in one evening) and he became very aggressive about it. Shouted and pushed me out of the way. I have decided it is safer for me and children just to let him walk when he feels the need. So far, he doesn't get lost and returns home eventually. I know that won't always be the case so may as well make the most of it for now.

If you, or anyone else, has any tips for coping with Peter's extreme boredom and apathy I would love to hear from you!!

Mary-Ann

 

[Grannie G]

Thank you Nada, the fact sheet rang many bells.

Dhiren used to walk for 2 hours every day, once he retired.

Now he walks from boredom, as he finds it so difficult to occupy himself and has a lot of pent up energy.

Today, he went for the papers..................................20 minutes each way
Went to the Pharmacy to pick up our medication......20 minutes each way

Went to the bank to open a business account ready to start his new business, instead of `sitting here rotting`, but fortunately got distracted.........................

It`s Dickens`s Week, here and local Dickens`s buffs, promenade in costume. There are shows and stalls, and the local schoolchildren sing numbers from Dickens`s day, and dance at the Bandstand.
He was out for nearly 2 hours.

He watched the activities, forgot about the bank, but this time, remembered to bring home some pudding.

 

[Skye]

Hi Westie

I know what you mean about the boredom. I posted a question about this some time back and sandy suggested colouring books

http://www.amazon.co.uk/s/ref=nb_ss_...&Go.y=15&Go=Go

I sent for some, and John loves them and spends quite a lot of time on them. But he was always artistic, but can no longer paint a picture from scratch. I don't know if your husband would be interested in this.

If you want to try some free ones, Nell suggested a site with free mandalas you can print off and colour. These have been very successful.

http://www.coloringcastle.com/mandala_coloring_pages.html

Unfortunately my westie just loves going out with John, so at the moment I'm depriving them both. But I just don't have time to walk with them morning and afternoon.