Just lately Ive found it incresingly hard to organise myself, ie finding paperwork, getting to places on time, working out a shopping list, getting up & ready to go out etc etc. I keep losing bits of paper, forget what I was meant to be doing,etc. Right now Ive just realised if I dont get the oven on there wont be any dinner, but seriously its worrying me. I used to be in a full-on lecturing job with a p/t job on the side and coped, not so long ago. Anyone else in this mess & how do you manage?
You don't say how long ago you gave up working. I have a theory that when a working parkie decides to stop the brain gives a huge sigh of relief and goes on holiday for a while. Gradually you reorganise your life,your brain realises there is still work to do and kicks back in. Meanwhile lists everywhere, and keep a detailed diary and keep rereading it!
I'm stil trying to sort it all out, I've never been incredibly organised, but used to be a lot better than I am now (right at the moment clearing up the kitchen from dinner is still awaiting me).
Everything gradually got totally disorganised because I wasn't feeling well.
I'm sure I woud feel better if I could catch up (mess = stress). It's not easy is it? Everything takes so much longer. My OH helps a lot, but I just hate the feeling of not being in control of my domain.
Still tomorrow is another day, another fresh start, I'll try to encourage you if you do the same for me, perhaps we can each achieve one long overdue task tomorrow and compare notes in the evening? What do you reckon?
Wishing you a good day tomorrow,
You are going the right way about it .. I havent got Parkinsons but , when I was on the change a similar thing happened to me . Never seem to finish things and it worried me o I started by making lists and crossing off as I went . Of course I did have to add things day by day .
It worked for me
I didn't get everthing done in a day but gradually I would go to bed with a lot more things finished.
one of the main deficits of PD is Executive Function- which is planning and scheduling. I know I am having increasing problems, particularly keeping bits of paper under control.
I have found the way forward is to move that function from being inside our heads to outside.
Instead of using our faulty planning memory, get a big whiteboard or similar and put on it a diagram of everything that needs doing and in what order. its important to only have one diagram on something that can't be lost otherwise we are just adding to the problem.
Second get plastic see-through folders and put the paperwork for each task in that. attach these to the whiteboard.
third get a timer. if dinner has to be started in 30 minutes set the timer. this way planning and scheduling are externalised.
hope this helps.
Hi all, thanks so much for your suggestions. I've got a list of stuff to do, written down, on a pad, on my desk ( I work p/t from home). and only I use that desk so now I'm beginning to think about moving it to the kitchen noticeboard, so my OH can look & help me. I'm frustrated as I used to have such a busy job & managed it, ran the home, etc...Right now its frustration and lack of sleep that's my biggest problem, but maybe the 2 are connected.
Leogirl, thanks for helping
My long overdue task for tonight is the ironing
It will get done! Annyone out there actually like ironing??
One of the most difficult things to accept about PD is that no matter how hard you try, you never achieve some of those things you could do before PD.
The key is to stop trying to do those things which are patently now simply stress inducers.
This is extremely difficult since giving up on things affect one's dignity and independence both of which assume the levels of importance probably disproportionate to their merit.
For example, speaking as an ex control freak, organisational wizard, houseproud madam, the simplest yet most effective thing I achieved was to let go, let go, let go and let go again.
Ironing of any description whatsoever became a thing of the past. In order to achieve this goal one needs to be surrounded by supportive people: a husband who can iron his own shirts is helpful, as is the daughter who can do her own washing and ironing and takes pride in all of it.
The cheap psychology involved in enjoying what you can achieve must not be spoilt by resentment of what you can no longer do. On a bad day, we all know what that means, simply set yourself the task of doing nothing, but of doing nothing with style.
On a good day, instead of doing too much decide to do one thing well.
This all sounds so simple, it is not. However, it is worth working towards. It means that when you say, "no" to people you must mean it. It means becoming selfish which is perhaps the hardest thing for some of us to do.
mrs t , I believe that you have hit the nail on the head. Whether a pwp or not, there will always be things that we used to be able to do but now find impossible. I believe that when a baby I was able to put my toes into my mouth. No doubt a very enjoyable and interesting experience at the time. Not much good to me now (even if I could )
I have found that "prioritizing" is the key to whether I feel I have "achieved" , and obviously those priorities have changed. No longer a well received work presentation, a dinner party enjoyed by all or even a pristinely ironed blouse. But maybe a 'phone call to a friend, a letter to my son, a thank you to a neighbour for the gift of some compost (long story!) I cannot deny that I miss and mourn for the things I am no longer able to do, but I am truely grateful (most of the time!) for those that I can still have a stab at!
With best wishes
Thought of you today, actually ironing used to be the thing I least minded really asregards housework, but when it became a bit awkward to set up the ironing board I just sort of gave it up, so myself and hubby are a bit creased these days, but nothing to worry about in the great scheme of things although there are some things that really do need ironing and I will have a go one day soon because I don't really want to lose the skill.
Well the earlier part of my day wasn't great, but later on I managed to catch up with a few things.Dusted the living room and cleared a lot of muck off the television screen! Did a bit of cleaning in the kitchen. Went out this evening with my OH and a couple of friends for a meal, which was very pleasant. Actually one of the most important things that I want to do is catch up with the paperwork. Trouble is everytime I sit at this desk I get sidetracked by this computer! LOL. Still it's good for us to keep our minds active with word games etc which I love.
I'll speak to you again, meanwhile happy ironing and list writing!
I am now learning to revel in disorganisation.
Bits of paper dont work cos I cant read my writing
Gadgetry doesnt work because buying batteries was on a shopping list I cant read.
Eck, I completely agree, it is almost enforced luxury.
The very fact that I've had let go of my anal organisation tendencies, means that I can now wallow in the environment of my choice. I kid myself that it is still my choice.
Im coming round to the idea that there's going to be stuff I can no longer do, which is hard seeing as I was once a head of a dept in a College of FE. And not that long ago. Some of my friends are having difficulty with finding I just cant get it together anymore and a member of my family thinks its just age. But it still frustrates me
I cant live in chaos and just hate being disorganised to this extent. Friends do things for me or offer to do stuff I was quite capable of doing 6-9 months ago. Perhaps I'd be better not remembering what I could do pre PD??
This is a thread close to my heart. I'm finding it increasungly difficult to deal with life's demands - bit of a prOblem given I'm working, have 2 small boys and run the house....I recently started a Day Book to list all my jobs - I've been waking in the middle of the night with my mind whirring...I'm hoping the lists will help.
Turnip, v interesting re Executive Function. I'm seeing my consultant next week, I think I' ll discuss it with him. In the meantime, I just tried and succeeded in putting my toes in my mouth AB so clearly all is not lost!
quarkee - i know how you feel,i have a part time but demanding job, two children,one disabled,run the house and dealing with banks abroad at 3 in the morning. I can't get my toes anywhere near my mouth but often insert a whole foot (joke!).
on executive functions here is an article http://www.springerlink.com/content/m88865762427t87w/
the interesting bit is that working memory uses D1 receptors. Most DAs are mainly D2 receptor focused. So they do not help with that area. Dopamine of course does, so those on DAs only might find a bit of an improvement when they add in l-dopa - i know i did. Not that i am encouraging anyone to move to it early but it might be something to keep in mind (if you can remember it (another joke)).
Hello again emswife,
I know it's so difficult to accept that we just can't do what we used to. I sometimes have to remind myself that in the "good old days" I probably would have just been too lazy to get everything done anyway, like I said before I was never that organised! But it used to be nice to have the choice of doing something if you wanted to, the feeling of not being capable is not nice. I think we have to concentrate on the things that we can still do and make a good job of them. By the way, I've managed to catch up a bit with all the paperwork, when you start looking through you find that quite a lot of it can go in "file 13" (the shredder or the recyling). Anyway I'm off to make a cup of tea now, wishing you a good day tomorrow, take care - you're not alone.
there is (at least for me) a slight drawback to making a "to do" list. By the time I have drawn up my list, I am exhausted but feel so satisfied that I have done my "to do", that I sit back and put on the headphones. Then the "to dos" don't get done , and the next day the list is an even longer one
Make sure you put "compile list" and "music session" on the list. That way you'll always be able to tick at least two things off.
Excellent idea - thank you
I find the best solution is simply to do nothing. Not even a list with nothing on it. Where necessary hang around getting in people's way, or putting things back in the wrong cupboards, etc.
You'll soon get sent up to bed, where you can spend the afternoon watching the horses on TV with your trusty laptop permanently connected to the bookie's.
It's funny, but I never forget how to do that.....