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ccinjersey
14th August 2014, 11:23
www.youtube.com/watch?v=OUpl0HDGq1Q


Coming soon...

pete
14th August 2014, 19:24
Hi CC,

He is a very unique person as we all know ,but listening to him apart from wanting his speech system , I can't see the fascination about what happened millions of years ago, it's all very much best guess as nothing is ever going to be proved, it is very much a theory .maybe better putting the time in on where we go after we have ruined this beautiful planet by greed and pollution ,that's if the Nutters don't blow us all up in the mean time ,so have a good day and stay safe ,it is a wonderful planet, sad that human beings have no respect for it .

Pete
XXX

ccinjersey
14th August 2014, 19:55
www.youtube.com/watch?v=7W33HRc1A6c

Hi Pete

Your post instantly made me think of this comic bit from another one of the great minds! (hope you enjoy it, or maybe remember it? )

Interestingly met again with the Speech Therapist again yesterday, she brought up Stephen Hawkings and his system, stating it is very high tech and not everyone can master the ability to use it, said he is highly proficient with it.

I asked the speech therapist what other options are out there that can move quickly and keep my dear friend engaged and in the loop of conversations as it moves rapidly. She said none. She spoke about the eyegaze systems but also said the rules of communication have changed, and new ones now need to be applied. We left still using "speak it' at this time, and a sheet of paper with letters on it for her to point out. Left disappointed, because we are still playing charades.

CCxoxo

pete
14th August 2014, 20:58
Hi CC ,
Yes I have heard of him, and he sums it up nicely .

The speech issue is a huge problem , I can empathise with Pat , the frustration of not being able to make someone understand leads to you not bothering as it is to much trouble ,once that frame of mind becomes fixed in your head, it's very difficult to overcome the isolation that it brings adding to the stress of the whole illness, the more folk use prof hawking as an example of MND , he has had access to systems we can only dream about and has had a lifetime where normal day living is alien to him, never physically worked in his lifetime ,he is the only man I haver ever heard of that exists to think and solve problems in his mind ,so trying to relate his life with ours is very much a no brainier, as for getting Pat a system that will be easy to use and affordable I have no idea , the name eye gaze is one that a few folk on the forum use, but I do know it's ridiculously expensive , for a speech therapist to not have any idea of what's available is a bit poor, why not email MNDA connect there very clued up on what's available ,sorry I can't help, for me now speak it is still working for us ,as for how much longer who knows . Love to you and the family.

Pete
XXX

ccinjersey
14th August 2014, 21:40
Thanks Pete

Speech therapist was aware of different apps as well as eyegaze systems. What I was asking her was what is out there that can move very quickly? She said everything needs to have the thought process information inputted into whatever speech aid using, therefore nothing will move quickly. Maybe she is wrong on this I don’t know?

Yes extremely frustrating and upsetting to see this issue causing even further isolation, and that exactly what is happening. When we are just one on one it seems much easier, because she can take the time needed and is even spelling words out. When it’s a larger group setting it feels like she is getting lost in the crowd. Then I get confused as if to engage her to join in because don’t want to make her feel uncomfortable. I find I'm now speaking in a way that doesn’t have to require an answer or comment back, not sure if that's a good or bad thing either??

A difficult situation to say the least…

Much Love back xoxoxo
CC

pete
14th August 2014, 23:58
Hi CC,

I know how she feels ,in groups of people we tend to get a little stressed, thinking all eyes are on me ,and panic attacks are the next thing, you have nailed it in your last section ,with some thought if you phrase the questions right ,it give Pat a chance to reply several ways a nod of the head or yes or no or at worst thumbs up for ok or down for not ok, ,I know I appreciate those who don't ask me to answer complicated questions and just keep with one or two word answers if possible . Good night , way past my bedtime .

XXX

ccinjersey
15th August 2014, 02:58
Yes you hit the nail on the head as well. I am coming to see up close and personal how this disease’s symptoms can swallow a person self esteem, self confidence, and self assurance right up. It takes an awfully strong person to hold onto who they are.

Praying my best friend has that strength in her. Maybe we come equipped with an inner reserve of strength that gets tapped into when faced with such challenges? We must, those suffering on this forum are an awfully powerful bunch, we many, many bold, strong, and confident personalities shining thru!

Best way to describe this is it feels like I’m holding onto my friends hand for dear life as she is slowing sinking into quick sand and I’m losing my grip to hold onto her as the quick sand keeps pulling more and more of her away from me.

Communication is the lifeline, will have to take it any form we can get it. Can’t let her sink into oblivion, she is so much more then this illness.

Thanks for that eye opener Pete, and goodnight.

CCxxooxx

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