More Promises Than Action.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Well it seems that Seetech is also going to be something that is turning into a never-ending story.

I hope not, but it does seem to be a problem, when Riny, from RTD came here with the Seetech computer on 29 August I thought everything was in order.

On the day transpired that despite promises that the RTD employee Werner made on 15 May they have not been able to provide an English dictionary.

Nor are they managed to buy the correct German dictionary, for which we paid them a couple of months ago.

Riny promised me that he would track down both of these applications and he would call me back last week to make an appointment to this week.

Well he did neither last week, something that did not surprise me and that is the behaviour I'm used to from his company, RTD Het Dorp from Arnhem.

I sent the company an e-mail last Friday asking to be called this Monday, Riny called and left a voice message promising to get back to me on Wednesday.

After waiting all day hearing anything I concluded at 17. 37 that I might as well forget about the phone call.

Right then the phone rang and it was Riny from RTD, however he was not calling to make an appointment, sadly not, instead he had other news.

Which was quite shocking news, he told me that I was the first person to want to use English on the Seetech computer, according to him this was the first time.

The

I was amazed to hear this yesterday, especially as this was never mentioned by other employee at the appointment to discuss Seetech on 15th of May.

Werner, their salesmen, who told both my occupational therapist and myself that it was no problem to install both the English as well as a German dictionary.

Riny told me he would do his best to try and work out how to install and use both dictionaries of the Seetech computer.

Once again I got the promise of a phone call either on Friday or next week, again I am left waiting, a familiar story and one that I've become very used to.

Over the last years of having to deal with suppliers as well as the bureaucrats who act as go-betweens.   

Optimistic Anticipation.

 

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta

  

This morning was not my favourite, because Milou, the wound nurse from the rehabilitation clinic was coming round to look at the progress of the wound healing.

Milou is a lovely young woman; very competent at her job, despite that I get very nervous before a visit just like I did when Ton used to visit before he retired.

It is really quite funny how anxious I get before these visits, but I think it is quite understandable it is not very pleasant needing someone to examine my bottom.

I have total confidence in the staff from the rehabilitation clinic, but I am really looking forward to this wound healing so I don't have to see them every two weeks.

Today Milou informed us that the wound was smaller than when she saw it two weeks ago, this is very encouraging news.

She did not say when she thought it would be closed up however Milou did seem very optimistic.

I think I will try to be optimistic too even if it is hard to do especially because I've been in bed now since 23rd of February this year.

Wednesday next week I will be getting the Seetech computer which will arrive in the nick of time because my hands are not functioning well.

Today I've had to resort to using my thumb to move the cursor as well as opening and shutting applications.

Considering that four years ago I thought my hand function was not going to last for much longer, I've done very well in being able to type all this time.

However in the last year I was only able to write short pieces for my blog every day, this was frustrating but it was the best I could do.

Hopefully I will be able to learn quickly how to use Seetech, my plan is to alternate between Dragon's speech recognition and Seetech.

This was a suggestion of Matilda my physiotherapist, who thought that I would prefer to use voice recognition to write my pieces and Seetech to correct with.

As well has surf the net, answer my mails, read the newspapers and many other things that will be much easier for me to do.

I'm looking forward to getting the new equipment next week, although I'm also worried whether I will be able to learn how to use the new equipment as quickly as I want to.

Enjoy Sitting

Oscar Dominguez.

http://en.wikipedia.org/wiki/%C3%93scar_Dom%C3%ADnguez 

Yesterday suddenly it became warm, for the first time this summer, it is has been cool, grey and overcast with a lot of rain, often under storms.

The only warm weather was in April, cool weather started in May, and continued in June, the 21st of June is Midsummer and supposed to be the longest day.

This year it was the most miserable day, the city had a thick cloud cover all day, there was not a glimmer of sunshine and instead of it being the longest day it was a gloomy day and by 18.30 in the evening it was dark.

Not what I call Midsummer and since then it has not improved, it has been a miserable summer, sadly one which suited me very well as I cannot cope with the heat anymore.

During the day yesterday I managed to cope with a fan right next to me, this was good as long as there was also cool breeze coming in the window, as soon as the breeze stopped it became unpleasant.

That was the situation around 23.00 so Richie got our mobile air-conditioning unit and put it in the hall next to the toilet so that the hot air would escape through the ventilator.

Not all does, which means that the hot air gets into the hall as well as the bedroom and because my bed is at the end of the room I don't get full benefit of the cool air.

As the airco cannot reach into the bedroom the best Richie could do was position it in the doorway and leave the fan on next to me so that cool air will be circulated around the room.

Not a perfect system but the best we can do at the moment, it meant I could sleep without any interruptions last night and I've been relaxed today and not feeling any of the ill effects that I felt yesterday.

This afternoon I received confirmation that the appointment for the installation of the air-conditioning was next Tuesday the 31st and I received the confirmation that I will get Seetech on the 7th of August.

At 14.30 I had an appointment with Kees van Roekel, from Welzorg, this was the final evaluation of the bed support system which I got at the end of February, today I received another foam rubber support for my hip.

 This extra support by my hip will stop my hip moving this causes me to slump to the left, as soon as I got it this afternoon it improved my life, Richie has only had to do two small adjustments of my left shoulder since 14.30 when I got the additional support.

That is really good seeing as it's now 20.00, that is 5 1/2 hours of uninterrupted sitting, which is absolutely brilliant this really is the best thing that has happened recently, it has given me back the pleasure of sitting without needing constant help.

It's amazing that such a small piece of foam propping up my hips on either side has enabled me to sit comfortably in one position, this is really brilliant, Kees is an excellent engineer for coming up with this solution at this moment.

This will allow me to enjoy sitting in bed without slumping and needing Richie's help and assistance constantly, I feel like a load has been lifted from my shoulders, well done Kees from Welzorg. 

At The End There May Be A Rainbow

 

Oscar Dominguez.

http://en.wikipedia.org/wiki/%C3%93scar_Dom%C3%ADnguez 

On Friday afternoon I was waiting to get a call from RTD Het Dorp, the company who will be supplying me with the Seetech computer.

Despite agreeing a time to call back, which was three o'clock, they neither kept their promise, nor could they be bothered to send me an e-mail. 

This morning I expected to find an e-mail in my inbox, however there was nothing, at 15.30 I called them.

My call was answered after ages, then the receptionist put me on hold for more than 4 minutes of horrible music then I lost the connection.

On calling back I was told that the colleague I wanted to speak to was busy on the phone, I enquired whether I should call back in 5 minutes I was told they would ring me.

This did not really convince me, I put the phone down and quite amazingly after 10 minutes I got a telephone call from the company.

However they didn't want to make an appointment, as Friday's caller wanted to, Rita only wanted to discuss whether I actually needed a German dictionary.

I really couldn't believe that was what the call was about, seeing as I discussed this intensively with both my occupational therapist and the representative Werner from RTD Het Dorp.

Werner had found a German dictionary for the Seetech computer, he informed me in an e-mail what the price was and I sent him an e-mail saying okay.

It seems that only after I have paid for the dictionary, will they will instruct their planning department to make an appointment to deliver the Seetech computer.

Not long after this slightly disappointing telephone call, I had another, this time about the air conditioning.

Next week Tuesday at two o'clock I have an appointment with somebody who will come here to see how and where to install the air conditioning unit.

If RTD Het Dorp gets their act together perhaps the Seetech computer will also be delivered next week.

Brilliant to think soon I will have had all the things that I currently need, when that happens I will be very happy, I can't wait.

Something To Look Forward To..

Oscar Dominguez

http://en.wikipedia.org/wiki/%C3%93scar_Dom%C3%ADnguez

Amazingly the sun came out after lunch and it's been a sunny afternoon with big fluffy clouds drifting by, they are now getting denser as well as dark.

So for once the whole afternoon has been pleasant, the kids playing on the play area opposite certainly sound like they're enjoying it very much.

Hopefully Richie and the dogs will be back from the park before the dark ominous clouds start to shower us with torrential rain as it did night before last.

It has been a really bad summer over here, very worrying for farmers as well as people’s allotments and vegetable/fruit and flower gardens.

Global warming does not mean long warm summers; instead it seems to mean intolerable heat waves for some, while for others like in Northern Europe now it means cool, wet weather, not summer weather.

Recently I've needed a lot more adjustments of my position in bed as well as in the shower chair, some days it feels like I'm constantly needing Richie's help.

But every now and again, like right now I'm sitting reasonably well a whole hour after Richie last adjusted my position, I am slightly leaning to the left but I can keep dictating without any problem.

The Dragon voice recognition software is good, although it can be quite frustrating at times when it writes something I did not say.

When the dogs start barking I have to try to switch the microphone off quickly otherwise I get sentences of either gobbledygook or just a series of are.

Often a whole sentence will appear that I never once mentioned, just now there were two sentences full of random words.

One thing I've noticed is that the speech recognition software does not recognise swear words so if I want to use them I have to enter them into the vocabulary.

I've entered quite a few names, strangely there are few that don't get recognised even after I've enter them into the vocabulary.

I was phoned by somebody from RTD Het Dorp, who wanted to make an appointment for them to bring me the Seetech computer.

When I received the phone call Richie was massaging and exercising my arms and legs, I was asked whether it would be better for the caller to try later on.

This was an excellent suggestion sadly she did not call me back at the agreed time nor did she send me an e-mail as she said she would do if she could not call me.

Hopefully I will get an appointment on Monday for the equipment to be brought round as soon as possible; I am looking forward to learning how to use Seetech.

Concentrate On Enjoying Life Now.

Marleen, Cyril, Tina

        

 Here it is another grey day, the weather in England is dreadful, they are experiencing high winds and torrential rain.

We are getting some high winds and rain, plus it is cool enough to have the heating on in the mornings and evenings.

Last night I got woken up several times each time finding my arms clenched tight over my chest and my fingernails digging into the palms of my hands.

No wonder that I woke up, and each time it took ages to get my arms back down by my side.

My spine is getting more deformed, it is more difficult to get me sitting straight; I did not notice it is as much in the wheelchair.

That’s due to the excellent support I get in the wheelchair, which I don't have in bed so I need regular adjustments.

I've been enjoying the football; it has taken my mind off my situation and given me something else to focus on.

Which is good as the stress of having to fight for everything has been getting to me.

I'm constantly either pushing for something to happen or I'm waiting for it to finally happen.

For example I've been waiting for Kees van Roekel, from Welzorg to come back since the beginning of March.

Plus I'm waiting to hear how the new application for the eye operated software is faring at the health insurers Agis.

It was made after an appointment with Dr. Janneke Stolwijk and my occupational therapist, Maurits, to discuss why the first application did so badly.

The advice they had previously included with the first application for Seetech was not up to date so they promised another.

They wrote a new advice, that I needed to be able to operate the IPaq with Seetech, as I could no longer use either the touch screen or the button.

My health insurers do not see the necessity of my having three dictionaries included, I will have to buy the German one myself.

I was amazed to be informed by the salesman from RTD Het Dorp that the German language dictionary only cost €158.

I thought it was going to be more, strange that my health insurers objected so strongly to this, major expenditure.

What is especially strange about the objections is the fact that they say they will assist people to maintain their quality-of-life.

In my case this means being able to communicate in three languages, as I was brought up speaking German and English, and I taught myself Dutch when I moved here in 1981.

In my case this did not count, all they were interested in was spending as little as possible.

They also objected to voice recognition, I guess this is also too expensive for them, strange as voice recognition only costs just €150.

They were quibbling about €308 which is why they turned down the application ‘from HES, last November.

I still haven't heard from the council when they will install air conditioning that I need so desperately.

The best thing I can do is to try and put it all out of my mind and concentrate on enjoying the here and now.

A Positive Appointment.

Zdzislaw Beksiski

http://en.wikipedia.org/wiki/Zdzis%C5%82aw_Beksi%C5%84ski 

This afternoon has gone quickly after the long appointment with Maurits, my occupational therapist and Werner, an advisor from RTD Het Dorp was over.

It started late because Werner could not find a parking space, however once he got here it was well worth waiting.

We discussed with him my problems with using the gadget that allowed me a small modicum of freedom to control some of my environment.

The iPAQ let me operate the bed, turn on the light, switch on the TV as well as open the front door and our apartment door, once I have checked with the intercom who is at the door.

I explained that I could no longer use the gadget as well as I could before my hand function got worse.

Richie backed me up totally saying that he was the one to operate the bed, turn the light on now that my hands were too weak.

 Also nine times out of 10 he also turns on the television and brings me the telephone on which he activates the loudspeaker so I don't have to hold the phone which I can't do anymore. 

Werner listened carefully to everything we said, he asked questions and made suggestions.

After a short time it was clear to him that I needed to have the functionality of the iPAQ on the computer that Icould operate operate by using the Seetech software.

Before the end of the appointment Maurits and Werner started getting the application organised.

When I asked, they both said that they would complete the application and would get it sent next week.

It was a very good appointment, Werner was a nice person, and most importantly he was a good listener and communicated very well with us.

I think that this application for the long awaited Seetech will be successful; hopefully it won't take too long, although there always is a wait of up to 2 months.

Hopefully this time it will be quicker, as the application is from the same company just updated to include the iPAQ functions.

Today's appointment has left me feeling optimistic, it was good to be listened to and feel that finally I would be getting what I need which is very important for me now, so that I can carry on doing the things I enjoy.

A Beautiful Sunny September Day.

Alfred Georges Regner

http://en.wikipedia.org/wiki/Alfred-Georges_Regner

My session with the physiotherapist, this afternoon,  was not easy because of the spasticity, the incredible stiffness in my right arm.

On Monday I could still touch my nose with my right arm, today I could only raise my hand as far as to my chin.

Not nice to feel and experience, this afternoon, I am going to try not to let it upset me; all I can do is stay cheerful and keep doing my stretching exercises with Richie’s help.

The new worry is that my left hand and forearm are also getting stiffer now, on the plus side,  I can still move my left arm freely and I can still type, although laboriously.

As long as I can write my posts, write and answer e-mails, read newspapers as well as surf the net and play free cell and solitaire I am happy.

Seetech software will allow me to do everything I want to, so I am looking forward to seeing the package Herman is putting together for me.

I can hardly wait to get the software and start to use it to write my posts, it’s good to know that there is software available when my hands stop functioning.

Hopefully once I read and; agree with what Herman has suggested, it will not be long to wait, think that I am going to be optimistic.

Today is a beautiful very warm September day, sunny and dry, nice for friends returning from their holidays in warmer places.

A nice goodbye to summer today, as the forecast is for high winds as well as a lot of rain, all because of the tail end of a hurricane, shame a sunny autumn is nice, but who knows it maybe still lovely.

   

Sunless, Cloudy, Hot, Muggy Sunday.

 
Joan Erbe.
http://en.wikipedia.org/wiki/Joan_Erbe

It was difficult typing yesterday, more difficult then I ever experienced before, the index finger had no strength, it went floppy so I had to type with my left thumb.

It took hours for me to write 200 words, something that usually I get written in 30 to 40 minutes not 4 hours like last night.

Very frustrating, fortunately I have the appointment with Herman this Thursday to try out Seetech, software controlled by eye movements.

Dragoon voice recognition software and Seetech will be how I shall be able to keep writing, keep in touch with friends and feel in touch with world news.

It is worrying noticing that my hand function is getting weaker, I need to be realistic and not fight the progression.

Instead I am going to use anthing I can to help me being able to keep using my laptop, that is something I need to do..

As long as I have any hand/finger function I shall use my hands, good to use everything I can use.

I intend to keep doing my arm exercise for as long as it is possible for me to do, even with Richie’s help.

It’s good to keep going for as long as I can.

                    

Every Day Is Very Different.

The World Upside Down.
Carlos Rafael Uribazo-Garrido.

http://en.wikipedia.org/wiki/Carlos_Rafael_Uribazo_Garrido

Today the rain has stopped which is a relief after the amazing torrential downpour yesterday afternoon that drove everyone off the streets.

After the rain the temperature dropped quite dramatically, it immediately felt like the end of September not the 23 of August.

I felt cold right away, while Richie was sweating profusely, he almost didn’t believe that I could possibly feel cold but that is MS, it deregulates all sensations.

Oh well that’s the vagaries of MS and the weather I guess, there’s nothing can be done about it but enjoy what’s is there to enjoy

I got a call today from Herman, from H.E.S was supposed to be here tomorrow to show me Seetech, software controlled by eye movement.

Sadly Herman has a problem with an inflamed shoulder, so can’t drive or carry his laptops as well as other equipment to demonstrate software.

Shame about tomorrow not happening as it would have been good, never mind on 8^th

of September there is another appointment.

I think I am getting accustomed to keeping calm when disappointed, like today; there was nothing to be done but wish Herman a speedy recovery.

Today is another day, my arms are painfully stiff, yet have not been as weak as yesterday, every day is different.  

Assistive Software.

Bridget Bate Tichenor.

http://en.wikipedia.org/wiki/Bridget_Bate_Tichenor

Today I had a very good appointment with my occupational therapist and Herman from HES, finally had a demonstration of Brainfingers.

It was very interesting to see how it worked; basically it reacted to eyebrows being lifted, my chin moving, even just clenching my jaw.

Also to laughing or other emotions such as visualisation or eye movements, did not get to writing or moving between applications.

Herman got me to do various exercises, play some games, he reckoned that I did well, nice to hear, mind you I could not see that myself.

Text gets entered using an application called Dasher, which is free & available on the internet

http://en.wikipedia.org/wiki/Dasher

http://www.inference.phy.cam.ac.uk/dasher/

When I found information about Dasher on the internet, in the second link, I found out abut an application called Gaze tracker which can be used with Dasher.

http://www.gazegroup.org/downloads/23-gazetracker

This is a low cost, open source eye tracking device, it looks very interesting and I can’t wait to try it out.

Herman will be back to show me another eye tracking software called Seetech, which I am looking forward to trying out.

http://www.see-tech.de/english/

http://en.wikipedia.org/wiki/Web_accessibility

http://www.compukiss.com/articles/computers-help-the-disabled.html

  

It was an interesting appointment this afternoon, it has made me feel more relaxed, knowing that there is so much assistive software available.