Hi All, bit of a novice at this but I thought maybe I would give it a go.It's probably been discussed a million times before, but then given the topic in hand, you probably wont remember anyway !?
I am 46 & have been diagnosed for almost 4 years.Dealing with Parkinson's isn't easy, we all know that. Some days are good & some days are dreadful. Luckily the latter are not too frequent !I can deal with lots of its strange outbursts, like dyskenisia, mild shakes,the Harlem shuffle, bad hand writing, walking along with a gait & ever so slightly crab like, slurring my speech & sometimes getting my muckin fords wuddled!!!
NO, it's not these things that bother me....... it's my memory !!
I lead a busy life, still working , have four beautiful sons (2 of which have flown the nest)have a loving partner and a house to run. All quite normal (whatever that is ?) However,I am finding it increasing difficult to remember the very basic of information, and I'm not just talking about the trip to the top of the stairs and standing there like a twit for not knowing why you went up there in the first place? I seriously get myself into all kinds of bother for not doing half the things I'm supposed to do.For example, if my youngest son has behaved badly and I have said that he must go to bed early, by the time evening comes around, I've forgotten our conversation that took place that morning and he goes to bed at the usual time, with a smile on his face...
I have missed several dentist appointments, visits with the PD nurse and left my friends sitting in coffee shops waiting for me to arrive. I've written lists to remind me of things I need whilst in town and then left them at home.!!
These things may all seem quite trivial and you could put them down to general absent mindedness, but it happens all the time these days and it worries me. My boys get frustrated, my partner gets cross and the cats go hungry !!!
It frightens me and although I make light of it , I'm really only skimming the surface of my forgetfulness and all the grieve it brings. I've had endless suggestions on how to jog my memory,huge notice boards, reminders on my phone, notes on the calender, notes everywhere, but half the time I still don't remember!! I'm concerned that by the time I'm fifty, I wont even know my name !!! Or my mothers birthday, which is worrying because it's the same day as mine........ what can I do !!! Does anyone else have these issues , is there an ingenious way to combat this ....................... please advise xxx
Thanks muchly xxx
hi welcome to the forum,im ali been dx for 11 years im 42 years old
i can relate to wot ur sayin about memory ,i find mine ha gone down hill more thlast few months,i say somethin one min and forget things so easy,i rite everythin down if i can do so,it a huge nusience.i dont no the way forward though with it like your self,ive just seen my neuro and told her ,but im havin another brain scan anytime now and she says lets wait till we get the results of that before we think of other things,which to me,drives me nuts,cus i thought i be ablle to just have a answer why it happins.she did say though that pd can cause memory probs,but i new that bit already i needed it a bit more in depth than the basics.all i can say to u is,when i no my reasons,i will let u no,and may be it worth while for u to tell ur neuro to,see wot he comes up with ,it be intrestin to no.in the mean time though we got to battle along i guess,u take care of ur self,and i will be in touch x
Do you find that your mind gets scrambled and lack concentration . Trouble is the more you worry about it the worse it is . I asked our GP about it I thought it might be the start of dementia but he told me it is not the same kind of memory problem . It is my husbnad who has the Parkinsons .. He keeps worrying about the timing of his medications . He drives me mad asking all the time lol But I know he cannot help it ..
Hi ya, Yes indeed, my mind gets scrambled , I definitely lack concentration. My organisational skills leave much to be desired and I really couldn't organise a p--s up in a brewery !! Ha ha ah !! BUT, I know that when I am at work, there is continuity, routine and I know exactly what's expected of me.... and being there is the only place that I 'function' properly !!!
At home it's a cross between down-town Beirut and Clapham junction !! No wonder it's chaos ! My new years resolution is to communicate more effectively, shout a little louder and delegate more.....when there is more than one person to think of , it is difficult. Being a Mum, partner, sister and friend is not always easy and although I've been wearing all these different 'hats' for a long time now, trying to keep everyone happy,including myself is not so straight forward. I sometimes think that people forget that I have PD, it's not an excuse, it's fact. It's not a crutch to lean on and I don't want tea and sympathy, just some consideration now and then !!?? So look out 2012, cause here I come !!!!
Here's hoping eh ??? xxx
Short term memory loss such as you describe is very, very commonplace amongst PwP: I just typed "memory" into our search engine and got 557 hits. I agree, it certainly gets worse with time, too. I suffer in just the same ways as you, and make list after list - even keeping a record of all my lists on my laptop. I'm 61, and was dx 11 years ago, but the memory thing has definitely accelerated noticeably over the last 12 months.
Recently I even forgot one of my passwords, which hadn't changed for about two years, for a period of 6 or 7 hours. I was really starting to panic, but then it just popped back into my head out of nowhere!
A good example is when I'm on the laptop with several windows open. I'll be doing something like typing an e-mail, switch to another window to check some fact or maybe the meaning of a word, but once I'm in that other window I'll forget why I went there. Then - even worse - I forget what window I'd come from in the first place, and what I had been doing.
I've even done this several times whilst having real-time "conversations" with other users. I'll be having an on-line chat about say dystonia, and I'll nip into another window to check something out. But once I'm there I'll forget why I was there, and then immediately forget where I'd come from. So I'll innocently start doing something completely new, until maybe an hour later - BING! - I'll suddenly remember that I'd been bang in the middle of a conversation, and that I'd left the other poor person hanging there, right in the middle of it!
All I need now is an antidote to this "condition"!
I have been told you need not worry if you forget where you left your keys, but should only get upset if you forget what keys are used for.
oh, well, I have been having more trouble with my memory lately too...forgot to order flowers for "auntie" in the home, for Christmas. Totally forgot, after o/h & I talked about it Thurs. nite...until he asked me Sat. nite , if I'd done it. By then of course it was too late. I forget things all the time now. The worst part of all this is, that "auntie"....is in the home because of age & Alzheimers disease, and she's his aunt...and it looks like he may have Alzheimers too...his memory is worse than mine already. His father had Alzheimers for years also, before he passed.
I make lists too..for both of us and they do help at times....like you said Hurr. Ruby...when you dont leave them at home!
I wonder if some of your memory problem might be due to stress, and if an anti-anxiety med might help? Just an idea.
hope today is a good day for all..............
i have been suffering from short term memory loss since last summer and its getting worst has many of my friends have noticed .my family are very concerned has i also get very confused that i cannot handle my meds any more and other everyday tasks also frustration plays a big part in this as well.
i struggle everyday but mornings for some reason are worst for me and late at night.
i have alot of smypathy with people who suffer with memory issues and it can be very frightening and upsetting for the person and for other members of the family.
It's good yo see you all getting on with your lives . Don't be afraid to ask for or accept help
I believe (it's only MY opinion though) that the more people get to understand or at least have some idea what it means to have Parkinsons can only be good for others recognising recognise the symptons and then being able to get the help of medication sooner .
I sorry I seem to have gone off the original subject ..
Yes I think its a really good idea to keep telling people you have parkinsons and they must not expect you to just be the same as you always have I say this because not only will the pd harm you're memory a bit but stress will harm it a lot, I dont have pd I am a carer and I stick my car keys in the fridge and cannot find them my h who is the pd sufferer has to find them for me even tho he is also blind! what I say is that when Parkinson strikes everyone in the family is affected, everyone in the family has parkinsons , and if everyone does that then the parkinsons is shared and you know what they say a problems shared is a problem halved? so tell people you are going to be generous and share parkinsons with them? love sunray
It's what I always tell everyone including my husband WE HAVE PARKINSONS !
I suppose its why I keep forgetting things lol . Although I am always asking to my husband to remind me of something and he never fails . Its a different kind of memory loss isnt it .
Hi - Folks yessssssssssssss forgetful I know I don't always remember who I said what to. Had humorous moment tonight when I couldn't remember the word amnesia! could describe (almost feel) the word which made it worse! Only thing made it better was when 20yr old daughter studying English had to google to remember too!
Must be something in the air, BJS! I did exactly that yesterday....could not remember the word : amnesia! Was trying to talk to someone about having it years ago....and they had to fill in the word for me...just awful.
Lately I've found that I've forgotten whole parts of my day, tho. that is really scary. I'll do something, and later o/h will refer to it, and I have no memory of it at all....
We dont' talk about it much tho, as I said earlier, he might have Alzheimers...like his dad, and aunt...as most days his memory is terrible, too.
Well, it is middle of the nite there.....I'm exhausted....time for bed soon...hope you are all sleeping well tonite....xxx
wide awake I'm afraid what can I say tired at wrong times! memory thing manageable at minute as normally still mentally agile enough to come up with alternative!my job involves communication ++ but still able at present, know family notice but you know we don't mention the obvious! Bless your dreams and your sleep, good thoughts till morning