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Chrissy
13th November 2012, 18:13
Hi All

How do you all communicate without speech? I am really struggling to understand Bob, keep saying "sorry didn't catch that" as if it's me that's going deaf but really his speech is really suffering, not sure how long he will keep his patience with me. Trouble is he has never learnt to use a computer and doesn't want to, he says we must learn sign language but that is only helpful while he still has use of both hands isn't it?

frustrated Chrissy

JONESY
13th November 2012, 18:21
Hi Chrissy,

I lost my speech in feb/march and sine then have been writing down what i want to say. But now my right hand is very weak I am starting to use ipad with predictable app from therapy box. It also can be used on an iphone.

Chris

Chrissy
13th November 2012, 18:27
Hi Chris

Thanks for that, not sure if an ipad would be much easier for him than laptop but worth a go, one of his hands is useless don't know how long before the other one goes, failing that I could listen a bit harder, bless him.

Chrissy

miranda
13th November 2012, 19:20
Hi A speech and language Therapist (SaLT) should be able to advise about some of the less techy ways of communicating. I tend to write notes but that is getting tedious and my handwriting is getting worse - it never was good

Joybells
13th November 2012, 19:23
Hi Chrissy,

it is so difficult when you can't make yourself understood. My hubby is slightly deaf whch doesn't help but I find when I'm annoyed with him and raise my voice he understands me better. Ask him to try shouting at you - he will feel better for shouting -it does me good.

Chrissy
13th November 2012, 19:44
To Miranda and Joybells

Haha for the shouting you're right he might enjoy raising his voice while he still can.
About the writing, he hates writing always gets me to do any letters, but if there is no other choice he will have to.
We thought we had an appointment in the offing for voice therapy but apparently they are short staffed and there is a long delay.
Maybe I will ring our GP see if he can put him down as urgent, he has been very good to us, when the same situation arose with physio he told us it was not good enough, told me to ring back and say it was urgent, funny thing is they came out that very day.

Chrissy

berdbrain
13th November 2012, 21:30
yes Chrissy, you need to be really strong and get cross on his behalf...it is not good enough that you have to wait...you don't have time on your hands.....be assertive, not rude just dogged, and do not let them put you off, just keep repeating that you need an immediate appointment and keep saying that until they give you a better date. I know from this forum and my sis in law that the SALT (speech and language therapist)is absolutely vital and sooner rather than later.

good luck
X

Chrissy
13th November 2012, 22:02
Thanks berdbrain, I will take your good advise. our GP who was the first one to mention MN has been fantastic I think he might get results on our behalf, We haven't seen him since diagnosis, he said the Neuro letter would take 2 weeks which is now up but will ring him tomorrow. Actually can't praise him enough, this is the first week he hasn't rung to see how things are and he carefully mentioned the nasty words quite early which gave us time to think about it so it wasn't as big a bombshell as it could have been. Well done to a GP for spotting the signs I say

Chrissy

john
13th November 2012, 22:51
Chrissy as Irene's mobility deteriorated we started using an alphabet card and all she had to do was blink as letters were pointed out. She wasn't into technology really and found eyegaze hard work and extremely tiring. We typed out the letters of the alphabet in fairly large characters starting each line with a vowel and just spelt out the words one at a time. We got quite good and you find you are able to predict a lot of what is being said. We laminated the sheet of paper and it proved invaluable and went everywhere with us.
john

Chrissy
14th November 2012, 12:20
Hi John

Thank you that sounds like it may suit our needs best. Just come off the phone to speech and language therapist..she is coming this afternoon..don't think anyone explained it was mnd, she said that always takes precedence so good news there, lets hope she can help in some way

Chrissy

Irene
14th November 2012, 13:50
Hi Chrissy,John lost his speech 19 years ago even before he was diagnosed hes used a lightwriter from speech therapy and as things have moved on they have adapted it for him.He tried the iPad last week but couldnt manage it his hands dont seem to go where he wants them to.Now he has a guard on the keyboard of the lightwriter so he can type one letter at a time.He still tries to speak but I cant understand a word now.He also gets very cross as if Im not trying to understand.I stay as patient as I can then I will say tell me on the machine or Im not listening.I walk away and then he will "speak" to me xx Irene xx

Chrissy
14th November 2012, 19:53
Irene

Aw bless. we just had someone from speech and language therapy today she has suggested bringing a lightwriter for me to program sentences in for him as and when he needs it, so we will give it a go.

Chrissy

Rory
20th November 2012, 19:20
Hi , I a, new to the forum. I lost my speech first of all with Progressive Bulbar Palsey strain. I quickly progressed from cards and notepads to SPEAK IT application on iPad. I carry the iPad wherever I go and I have stored phrases - especially drink orders at the pub ! It is amazing how many phrases we use tiime after time. I accept that many of us are not IT literate but the IPad is lighter than a lap top, the key board is touch type ,so it will do the trick. Anyone can type in and save the answers - eg " I feel fine" (hopefully!) and it easy to scroll down to the phrase if you put them in some order.
I was diagnosed in March 2011 and I have used the app ever since. I hope this helps but I know everyone is so different with this illness.

Rory

roy
20th November 2012, 19:26
Hi Rory.

Pete uses a polite phrase on his Ipad "whizz about" its a polite way of saying you need the loo think its a midland saying.

Roy.

Northern star
20th November 2012, 19:30
Hello Chrissy
I have resorted to an IPad but if Bob is having problems with the software I recommend 'Speak it' it's only a 1.69 to download it onto an IPad which the speech therapist should provide you with . 'Predictable' is another programme you can use if typing is an option . I switch between them both. I think the psychological move to start using equipment to speak is a big one which most don't really understand... Good luck

Chrissy
20th November 2012, 22:20
Hi Northern star

Thanks you for your advice, I will make a note of "speak it" and "predictable". It's getting harder to understand him but you've got to laugh he blames me says I'm going deaf, haha

Chrissy

Smudge
21st November 2012, 18:15
John's speech has got really bad and the Neuro recommended that he download the Speak It App on the IPad. It works brilliantly, and we've pre-programmed some useful things - 'make me a coffee, bitch' being his particular favourite! John's right hand function is practically non-existent, and his left is going the same way faster than I would like, so the IPad is perfect as there are no buttons to push down on, just the lightest touch.
It's really worth trying, John barely used his until recently and now he's never off it. It's also useful for using the Facetime app, which is a bit like Skype but only between IPads or IPhones and is great for keeping in touch with his kids.

Chrissy
21st November 2012, 22:38
Hi Smudge

Thanks that's another option..love the "make me a coffe bitch"...someone else who's kept his sense of humour

Chrissy

Rory
22nd November 2012, 18:44
Chrissy, Smudge, Northern Star,, Roy
I love the comments- seems like me there is loads of fun to be had. If I insult any one , I blame the machine ! I said to my wife the other day ( well the machine said it) "it is a pity that MND doesn't affect my hearing as I can I hear every word you say darling !"

Another one in the pub recently " you are my favourite Landlady !" earned me a double rum on the house !
Keep smiling all Rory

Chrissy
22nd November 2012, 20:37
Hi Rory

Trouble is Bob has me believing that my hearing is really going (must get it checked). The further his neck drops the more he mutters, I am now looking at him and smiling, works sometimes but other times he says " am I really that bad,? you haven't got a clue what I said".
Don't want him to lose his speech completely but might be easier with a lightwriter or ipad. He actually made me laugh out loud just now when I didn't catch what he said I beamed at him and nodded to which he replied "Oh God what with my body failing and you losing your f...... mind we make a right pair" haha

keep smiling they go easy on you if they think you're mad

Chrissy

Rory
22nd November 2012, 22:07
Chrissy - as you say- keep smiling - they think we are mad - admittedly I did have a head start! The trouble I have now is if I am writing something amusing or insulting on the ipad , I have a broad grin across my face which I cannot control and my wife or friends prepare themselves for whatever is coming at them!
I give the nurses and helpers a hard time with the comments at the day hospice but they al respond and give as good as they get!
Get your hearing checked out by all means (I won't repeat that again!) but use Speak It - Bob will have so much fun and it seriously aids communication.

All the best

Rory

Smudge
22nd November 2012, 23:12
Chrissy, the key with John was to make it fun to begin with so that he was a bit less self conscious about using it. I pre-programmed some sensible stuff, a sentence explaining his condition, another giving my name and phone number etc, then we had fun making it swear, speeding up and changing the voice. By he time he'd got the hang of it, he'd forgotten his inhibitions.

It is tough, but we try and lighten the mood as much as we can. I cry my heart out when I take the dog out, but make sure that the tears are dry before I get home. Wendy :)

Chrissy
23rd November 2012, 22:36
Hi All

It does my heart good to come on here and read all your funny lovely comments, with your help and a bit of luck maybe I will keep my sanity and sense of humour..Lord knows you need it ...
Wendy I save my tears for when I'm driving, I'm sure people look at me oddly though when I get to the shop or wherever I am bound but I put my smile back on and pretend we are coping (actually think we are at the moment but early days yet)
Rory..I bet you are a real handful but you do make me laugh and that's a really good thing.Ta for that

Chrissy

Rory
25th November 2012, 17:28
Chrissy
I think you are coping remarkably well considering the very recent diagnosis - keep it up both of you ! I have found it is a joint effort with ones partner - when one is slightly down the other needs to be strong to get by . When my wife appears down, I send her out shopping and it works ! I wouldn't necessarily recommend it to Bob though ! when I am down she just passes the remote control back to me and goes pour me a rum !
As you can see our joint effort is fast reducing our bank balance and turning me into an alcoholic ! As I have said before , thank goodness MND doesn't stand for MUst Not Drink
Keep smiling
Rory

Smudge
25th November 2012, 18:44
I'm liking your thinking Rory, except for the remote control bit - I think that might give John ideas above his station ;-)

Rory
26th November 2012, 15:21
Smudge - try it out - Bob deserves a treat !
Chrissy - substitute your tears with a smile when driving - it works - and your vision improves !

My wife has literally just sent me an email saying she can't find her credit cards - she left them at home. I feel as if I have won the lottery !

Tomorrow is another story

Have fun

Rory

Chrissy
26th November 2012, 17:21
Hi Rory

Will definately give that a go, was wondering why I couldn't see, haha

Chrissy

Smudge
26th November 2012, 20:28
Rory I'm sure Bob does derserve a treat, but I'm not sure that giving him the remote from our TV would work - Bob lives about 40 miles from John and I!!
I spoil John with a never ending supply of homemade shortbread and coffee on tap, and I give him a bit of peace and quiet from my constant encouragement (I find the word 'nagging' so unfriendly :) ) when I take the dog for a walk.

The man is spoilt beyond belief.

Rory
26th November 2012, 20:46
Smudge -sorry for the typo ! One cannot be spoilt too much !
I spent 500 on my first date with Irene - I would have spent more but that is all she had in her purse !
Roey

Northern star
27th November 2012, 08:05
Oh Rory , I thought it was just me who had this broad grin ! I don't know about you but it rather spoils the joke as people know I am up to mischief before they read ,,, I try to suck my cheeks in ,,,,, my problem with the voice over on Speak it is that they are all posh and Southern I want a raw northern accent ,,,,,,
Do you full function in your arms Rory ? I worry as my right elbow and shoulder get painful when I use the iPad ...any ideas ?
Northern Star

Northern star
27th November 2012, 08:09
Hi Chrissy , some people worry about my hearing too ... But when I am tired and its too hard to speak sometimes I can't be bothered writing I just 'tune out' I know it's bad so I have developed a signal for people to let hem know I just want to be left alone or a while ..... Maybe that might work .... By the way I think you are amazing and really supportive to him ...
Northern star

Rory
27th November 2012, 18:23
Northern Star
The posh voice doesn't really suit me as many point out - having heard my London / broad Essex twang for so long. I used the Spanish accent - Antonio - in Lanzarote a couple of weeks ago and we had such fun ordering drink and general banter amongst the 4 of us!
I can see you problem of you had a Nothern accent - how do you order a drink abroad - no one understands you ! It is bad enough when you come down our way ! My grin doesn't hide the comment I am about to make , like you but it does stop people talking before they go on to the next subject. My problem is I don't always touch the right key and I often push 'play' by mistake on the left hand side which normally entails a rude message being blurted out as I frantically hit the volume button ! By way of interest I was given a speaker attachment which turns up the volume when in a more noisy environment . The arms are OK at the moment, weak but the fingers are starting to mal function - little fingers don't obey the brain - what's left of that !
Cheers keep spirits up and in large measures !
Rory

roy
27th November 2012, 18:45
Hi Rory,

Now thats a real suprise to me, when I read your posts always imagined a posh voice you know real old fashioned queens english just like the vintage films, now when I read your posts its going to sound like Micheal Cane.
Mines a large one ( drink)

Roy.

Rory
27th November 2012, 19:41
Roy

An amusing story when I worked in my last year having been diagnosed with PBP. I had a meeting with 3 directors of an Indian based international reinsurance broker . I worked in financial markets and I was meant to be opening accounts for them to send premiums to Lloyds of London and also to facilitate claims going back to India,
I was slurring with MND
The chairman of the meeting , a good friend of mine , and a CEO of a city broker joined the meeting after he had a customary 3 hour lunch.
The 3 Asian gentlemen - let's say their English was very basic.

With the three Indian accents, my slurring and my friends alcoholic waffle - no one knew what the hell each other was talking about for 2 hours ! I left the meeting in stitches and my friend and I often recall that mad 2 hours when everyone kept saying ' pardon ' or ' could you repeat that please' . No conclusion, no business done but a belly full of laughs !

Michael Caine ? Zulu ! " Stop throwing those bloody spears ! "

Rory

Chrissy
28th November 2012, 08:10
Hi

Northern Star, thanks I am doing my best I look at him and remember inside this broken body is a man who has looked after me most of my adult life (and he really has) that helps.
Rory, making me laugh again, going to be interesting when we get Bob's lightwriter and choose a voice, he's a good old London lad, so, do they not have an Ealing accent then? how strange!!!

Chrssy

Rory
28th November 2012, 13:11
Hi Chrissy
I am sure you are taking good care of Bob - the lighwroter will add fun to the day !
I read somewhere about Bob living in Notting Hill - I am going to my favourite pub there again on Friday - the Uxbridge Arms, in Uxbridge Street -does he know it ? Quality boozer with lovely barmaids !
Remember gas is dearer than wine now - so don't drive - drink instead.!

Roy - you are welcome to a large one mate - I wonder what accent you have ! Inspector Morse ?


Have a good day

Rory

roy
28th November 2012, 13:51
Hi Rory,

I wish, spent about 20 years in london as a retail manager so Im afraid my accent is more of Jack Regan-didnt help chain smoking cigars and fags -fortunatley kicked the habit 6 years ago -bad for your health lol
One of my haunts was The Dickens Inn by Tower bridge and The drug store kings road.

best

Roy.

Rory
28th November 2012, 17:13
Jack Reagan
We would make a right pair - they say I used to look like Dennis Waterman at the time of the Sweeney when I had hair ! I also used to use the Dickens Inn and I had one of my many stag nights there (first marriage) - a good watering hole ! Don't know the one in the Kings Road but I am sure I would have been in it before a game at the Bridge.
I don't worry if the glass is half empty or half full in life - they both mean there is room for some more !
Keep fit and have fun
Minder

roy
28th November 2012, 18:23
now then George,

see like me your a chelski man, yep me too crying in my beer losing legend De-mateo for that Rafa is just wrong.
Its like serving carrots with chips,ketchup on ice cream,being seen in a 70s Skoda its just not right.

Jack.

Chrissy
28th November 2012, 18:57
Hi Rory

Yes Bob knows the pub well from back in the days. He was born in Ealing but brought up in Notting Hill (before it got posh).
sadly he is not risking a drink any more, much as he would enjoy it, he's too wobbly thinks it wouldn't help. He is in his wheelchair permanently until going upstairs, but as this is only since Sunday he's not sure if he could get from our Porch to the car (to pub). Roll on adaptation when he can wheel himself down our drive, maybe then we can start going out together again.

Chrissy

Rory
28th November 2012, 22:10
Hi Jack and Chrissy (you need a nick name !)
Make the adaptation happen sooner rather than later! I find going out in a cab , a short walk through to the bar , a quiet pub where they know you and then just listen to the banter with some mates so refreshing - and I don't even have to go tothe bar once ! I have a friend from the Lizard who popped in the other day by surprise - went down the local - I think he came to escape the weather and the wife !
Hope the adaptation works and you are able to both get out more.
Jack - alas I am not a Chelsea fan but I have been as a guest of a mate - unfortunately I am a tractor boy - so I have less than most
readers to shout about ! Trip back to Essex/ Suffolk borders coming up to where played my local footy.

Easy on the Scotch and brandy you two !

George

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