General Chat

WHAT HAPPENS TO YOU WHEN YOU
CAN NO LONGER COMUNICATE VIA
TYPING WORDS THAT OTHERS CANT UNDERSTAND
WHAT YOUR SAYING,OR TRYING TO SAY,ONLY A FEW KNOW IM LOOSING MY VOCAL SPEECH BIT BY BIT,BUT
WHAT CAN I DO WHEN I CANT COMUNICATE BY WRITTEN WORD,I HAVE ALLWAYS BEEN ODD ONE OUT BECAUSE
I WRITE AS I SPEAK,WHAT HAPPENS WHEN I DONT SPEAK,
HOW DO I EXPLAIN MY DEEPEST THOUGHTS OR EMOTIONS
WHEN THOSE I THOUGH NEW ME CAN NO LONGER UNDERSRAND ME,,,GOD IM MAKING A RIGHT MESS OF THIS BUT IF I DONT SAY NOW FOLK WILL THINK THE WORSE,,,,,,,,,

Whats the machine that Stephen Hawkins uses?? An adapation of that might be a solution - There must be charities who can help with funding. Or how about the Occupational Therapy dept or who ever supplies Aids??

Oh Gwen, how scary for you to face this situation. I wonder if you can try writing phrases in a book e.g. I am feeling sad because I can't tell you I love you or I would like to be taken outside to see the trees etc etc so that later you can point to the sentence and be understood. It might help a little, obviously you could write sentences or phrases relevant to yourself and your family and friends.

I hope you can find ways to stay in touch with people, will be thinking about youxx

Lizx

I'M SO SORRY FOR THIS,I WAS ON A BIG DOWNER
SORTA ROCK BOTTOM OH WAS IN BED I WAS FRUSTRATED AT NOT BEING ABLE TO FIND THE WORDS I WANTED TO SAY,I THINK THIS PD IS GETTING A LOT HARDER TO (AHHHH) CANT THINK OF WORD,"BATTLE" WITH AND THINK UNLESS YOU HAVE IT OR SOMEONE YOU DO KNOW IT IS IMPOSSIBLE
TO UNDERSTAND,I DIDN'T BEFORE,BUT NOW NEW DAY LET BATTLE COMMENCE OR SEEING I BEEN UP MOST OF THE NIGHT A GRANNY NAP MAY BEE AHEAD
XXXXXX

I am off for my Granny nap too, Gwen. O.h. has just gone to work! I am glad you are feeling more positive today and hope it will be a goo day for you.

My late Aunt had PD and o.h's grandfather had it too so I worry about either or both of us developing symptoms.

I think you have coped amazingly so far, and I am sure you will still find the strength to fight back.

Lizxxx

Things always look bad in the middle of the night but morning brings hope of another day. Dizzi I can't pretend to know what you are going through, I've never known anyone with PD. I understand what it does as I've looked it up.

It doesn't matter if you put gobbledy gook on here because you're with friends who care about you and forgive the gobbledy gook and try to see what you are trying to say.

We realise how frustrating it is for you and we admire how you try to cope and your humour shines through. My OH asks everyday what you're up to and he listens to your tales.

We are with you so when you are frustrated vent your spleen on here, we'll understand.

We belong to the Dizzi Fan Club :-D <3 <3 <3 <3 <3 <3

Dizzy we do not care if we have to translate your written words... I do not care if I have to think about the words you lose as you chat on the phone. <3 <3 :-D

I'm a member too . I love to read your posts Dizzi. <3.

Dizzi, My brother gave me a home video a couple of years ago, it was filmed when my son was little and it was mostly him on it, but in the background was my mum talking, she didn't want to be filmed.

As you know she had parkinsons, and listening to her on the tape was hard as I realised how difficult it had been for her to speak at times, ..but here's the important bit! back then I had no problem understanding what she said because I was used to how she said things, and because I knew her so well I would understand what she meant or might be thinking without the words being 'right'.

Those who know and love you will always be able to fill in the gaps that you might leave in sentences, whether you speak them or write them, and they have years of knowing how you think to help them. I can always understand your posts on here :-) xxx

Dizzi I can always understand you and I really enjoy your very honest posts. I imagine some days will be better than others so you will just have to say more on the good days. :-) We shall all be sure to make the effort to understand you and I expect it is like it is with children. When you know them you learn to understand and fill in the words they may get wrong. :-) <3

I will fill in the swear words for you.

Even if they don't need filling in...........I will add some anyway.

;-) :-D <3 <3

Dizzi, I can't add to what everyone else has said really but keep on typing something on here as long as you can type, we will understand you. I always read your posts and at the moment have no problem understanding. I understand that it is scary for you but keep on keeping on girl, we are with you and we love you. When you can't think of a word we will put words in your mouth for you :-D May be naughty ones though :-D Especially if PH is the one doing it.
Are you still ok with us not using capitals? <3

I WANT TO SAY A BIG THANK YOU FOR
YOUR REPLYS IT DID HELP A LOT,
WENT TO SEE A NEW NEUROLOGIST TODAY.
HE REDUSED ONE MEDICATION SEEMS WHATS
GOOD CAN JUST AS BE BAD FOR YOU,
ONE THING THAT WAS WORRYING ME WAS IF I HAVE SIGNS
OF DEMENTIA WITH THE WAY THINGS WERE GOING
I COULDN'T CONTROL MY LIFE,NOT THAT I WAS ANY GOOD AT IT BEFORE,HE SAID HE'S PRETTY WELL CERTAIN I HAVN'T GOT IT,
WAS INVITED BY A YOUNG NURSE TO A SUPORT GROUP SHE RUNS,SHES NOT VERY OLD MID TWENTIES AND SHE HAS PD,MAY GO TO HER GROUP.
CANT PROMISE TO GO OFF RAILS AGAIN AS NOW I KNOW PERHAPS YOU WILL WATCH OUT FOR ME AN IF I GO OFF RAIL AGAIN ,JUST YELL AT ME,
HOPE THIS MAKES SENCE IT DOSE TO ME AT THE MOMENT
BUT IN DAYLIGHT IT CAN LOOK GOBBLDE GOOK

THANK YOU ALL VERY MUCH
LOVE YOU XXXX

Gwen, you must be very pleased with the results of the consultation, and your worries have been eased re dementia.
It will be good for you to go to the support group if you can.

I am sure I speak for everyone here when I say that we will do our best to support you when we can because we enjoy your posts and care about you as one of us, and don't like to think of you feeling down.

Lizxx

Dizzi, I have come across people who go to support groups and they have all said the same thing, whatever their problem was, be it mild or serious - we felt alone until going to the group. Just talking to people who know what you're going through helps.

Go at least half a dozen times before judging it. Get to know the people but be careful as they may get to know Dizzi ;-) :-D <3

After the stroke. Fred got his mucking furds wuddled all the time but we still knew what he meant.

Everything only has a limited range of words that are relevant to it, When he told me he wanted Aviemor for lunch I knew that could not possibly be what he meant so we only had a few options to try and I wouldn't think to suggest Tarmac, balloons, false teeth or engine drivers.

I have pointed this out to people who don't read as well. If you are looking at a menu you will not find concrete or chip board written on it so you have far less chance of going on than you think.

Hi Dizzi,

I don't often post on your threads but I always read them and, even when you are down, you somehow make me smile. Just keep posting - nobody will care if the words come out wrong sometimes.

I have a little bit of experience with PD as a dear uncle and my father in law had it, and we now have a friend with it. I know they were all affected differently. FIL, who wasn't really a joiner, did get persuaded to try a support group and enjoyed it and found it helpful. When it got too difficult for MIL to get him there, the local branch of the PD Society sent a car for him. Give it a try.

Good luck <3

Hello my dear Dizzi,


<3 Just for you. <3


Take gentle care
With best wishes
Love Elizabeth, EOS
xx



<3

<3 <3 <3 EOS <3 <3 <3
<3 <3
DIZZI

We're now waiting for the change the reduction in medication makes :-D :-D :-D

Must be quite a relief to know you have no signs of dementia - just what everyone else has after a 'certain' age - drag yourself upstairs, then wonder why???

I knew, at the weekend that I had to make 2 phone calls this week. It took me until today to realise the second one was to a chemist to check they really do process films in an hour. :-S :-S :-S

It wasn't important, so brain shoved it to the back.