A Busy Day.

 

Roberto Matta.

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

Last night we were both fast asleep when just after 03.00 the phone rang which ripped as both out of our slumbers.

These days it's not possible for me to get my arm out from under the cover and stretched out in order to pick up the call.

The noise of the phone ringing eventually stopped and we both tried to go back to sleep just as we were dozing off the phone rang again.

This time Richie answered and shouted leave us alone and replaced the receiver again, we both tried to carry on sleeping.

Only to be disturbed by a ring at our apartment door, which got the dogs barking, Richie and the dogs rushed to our front door.

When Richie got there he was greeted by two ambulance men, apparently my alarm had gone off.

Something neither of us had noticed because we were asleep, the ambulance crew took some persuading that I was okay.

In fact Richie had to yell at them and then they finally understood that we had not activated the alarm, then they finally left.

It took us both a long time to calm down and relax and even then it was a long time before either of us could sleep again.

We wanted an early night because somebody from RTD was coming around at 10.00 to install the English as well as the German dictionaries on the Seetech computer.

On the phone Rini, the engineer told us he would not be long, he ended up being here from 10.16 to 14.30, in which time he installed everything successfully.

He also downloaded openoffice.org for me which has Word but sadly no e-mail program, it would be great to find a free downloadable e-mail on the Internet.

While he was here he reprogrammed the IPaq gadget because I could not activate the bed so could not adjust my position.

He also edited one of the numbers on the quick dialling page and he removed the control box on my wheelchair for the electric arm, which I returned the.

No sooner had Rini left but my lovely physiotherapist Mathilde arrived for our Thursday appointment.

Not long after she was gone Gareth and Paul came round to visit us one more time before they leave tomorrow afternoon.

It has been quite a day; I've never had so many phone calls as today or so many people coming round.

It would have been much pleasant had we both got a good night's sleep, I phoned Ata the alarm providers, and explained what had happened and how often the alarm goes off on its own.

I now have an appointment for someone to come here next Tuesday to replace not just the battery but also the box.

Once that is done we shouldn't have any more incidents with the alarm going off on its own like it did in the middle of the night.

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.   

More Waiting.

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

This morning was different it started earlier, Richie woke me up at 08. 00 because I wanted to be ready well before the Seetech appointment at 11.00.

First of all he massaged my shoulders, then my arms before starting doing exercises to relax my tight muscles.

After that I did more arm exercises, as I can't hold on at all with my right hand and now my left hand is also losing its functionality so I use wrist supports.

Peter, who works for the rehabilitation clinic made the supports, they go around my wrist, they held on by Velcro, they have a hook.

This is attached to the handle over my bed and I can do my stretching exercises then Richie places two handles higher and I do more exercises.

While I do those, Richie is doing my leg exercises, lifting, stretching and then massaging both legs.

After brushing my teeth, taking my baclofen tablets Richie got me out of bed and into the shower.

It felt good to be in the shower so early in the morning, I think this will be our new routine, so we can get the most of the day now summer is coming to an end.

Everything went really well and I was back in bed by 10.00 well before the appointment at 11.00.

At 11.22 Rini, the man from RTD Het Dorp finally arrived, he showed us how the Seetech computer worked.

Disappointingly there was no English dictionary installed, and they had got the wrong German application, not a dictionary, there was also no e-mail program and no Word installed.

When I heard this my first reaction was to say please take it back and first install the English, German dictionaries then it will be useful for me.

If possible also install an e-mail program as well as Word, I was told that Word would not be supplied as the health insurance think WordPad is sufficient.

But if I wanted Word I would have to buy myself Windows Office and if I did, it comes with an e-mail program.

However I was eventually persuaded to keep the Seetech computer here so that I could practice every day and would be ready to use it fully once everything is installed.

Rini promised he would return the incorrect German application and ex-change it for a German dictionary, he would also retrieve the English dictionary.

Next week he will let me know when he has got both applications and then he will make an appointment for the week after.

So in two weeks time I should have a Seetech computer setup for me, which it is not at the moment, once again I have to be patient and wait.

Looking forward to tomorrow.

Roberto Matta

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

 

It has been a pleasant day today, funnily enough the sunshine got stronger after 18.00 this evening.

Tomorrow at 11.00 somebody from RTD will be here, bringing the Seetech computer with them.

I am very much looking forward to getting this, as my left index finger is not functioning well and sometimes I have to use either my thumb or knuckle.

Neither of which is very efficient and it takes me ages to click on something which is enormously frustrating.

I'm hoping that from tomorrow I will be able to use the computer without any unnecessary stresses.

My plan is to write my blog, as well as e-mails, letters and Word documents using Dragon voice recognition.

I can do all the corrections and the editing using the Seetech software which can be very handy as I am not going to be able to move the cursor much longer.

The Seetech will be handy for surfing the Internet as well as to help me visit other blogs something I'm looking forward to enormously.

I'm going to keep this short as I want to get it published on my blog and then I can relax and enjoy the sunshine outside.

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.

Good News..

 

Oscar Dominguez

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

Today I've received some good news; the first was from Werner, the salesman/advisor from RTD Het Dorp that my health insurance has given the go-ahead for Seetech.

What a relief it was to get the news that finally I would be getting the eye controlled software which I've been asking for since February last year.

Right now I don't care as long as I get it as soon as possible, so that I can learn how to use it, hopefully I'll become Seetech literate quite quickly.

The other good news came in the form of a registered letter from Mrs Yildiz from the Amsterdam council’s legal department.

It was a long densely written bureaucratic letter which went through point by point what the council’s duty of care to the handicap was.

As well is outlining exactly in what circumstances an application for air conditioning would be agreed to.

While stating in the letter that I won my appeal, it also mentions that there could be a problem with abnormal levels of heat in this apartment.

In the letter it says that the investigator Hans de Graaf from Mozaak had asked me this question as well is whether I asked my landlords for assistance with my problem with the heat.

The letter states that because I did not cooperate with this part of the investigation, and that is the reason in negative decision had been made by the investigator.

I of course answered all the questions including those two, informing the investigator of the problem was my MS which my landlord could not help me with.

Mrs. Yildiz goes on to explain that she has decided to overturn the negative decision and give me air conditioning.

The letter does not tell me what type of air conditioning I will get nor does it tell me who will install it or when we can expect it to happen.

Seeing as its holiday time right now in the Netherlands, I will have to wait a bit longer to hear.

Being Brave.

Dorothea Tanning
 http://en.wikipedia.org/wiki/Dorothea_Tanning

How I wish that I didn't have to be brave, I really yearn for life to return to what it was like before the diagnosis of Multiple Sclerosis in 2006.

Then, as now, I did not feel brave all I was trying to do was to keep going the best way I could.

The reality is that things will never change back, nor will the progression of my MS go into remission and give me more time enjoying life with my darling Richie.

I'm really starting to feel that my strength, what little I have left is draining away; I can feel the steady progression day by day.

It really is shitty, that I not only have to struggle to keep my identity, but I have to seemingly fight for everything I need in the way of aids to make life easier.

How typical of this uncaring capitalist society to make vulnerable people go through hell in order to get mobility aids.

I still can't believe that so much time, effort and money are spent trying to find reasons to not give me, as well as others a vital piece of equipment.

What I find makes it even worse, is when they forget conveniently to keep me informed.

Like my occupational therapist Maurits who despite my asking many times still forgets to keep me informed.

He, Maurits as well as other advisers, consistently forget to keep me in the loop Welzorg and RTD H Dorp are the worst for this.

Because of this attitude I've become accustomed to people coming around for appointments and promising that they will send me the information and never do.

There really is nothing more disenfranchising than being kept ignorant of what is going on; it is rude and totally insensitive.

I really don't understand why my occupational therapist cannot be bothered to let me know the things I should know, such as status of items applied for.

It is not just my current occupational therapist who forgets promises made; Johanneke was also very prone to making promises and not keeping them.

It almost as if this point is not emphasise enough during their training, it seems a strange to me to do a course of training and forget that it is vital to communicate with your clients.

That surely is the whole point of training for the so-called caring professions, for me that means being trained to communicate with the target group is essential.

So often forget that it is their clients welfare that is important, it often feels to me like we are there for them surely if it weren't for us they would not have work.

No wonder that I have to be extremely stoical, brave in the face of such bureaucratic insensitivity.

It's a good job that I am so persistent and able speak for myself otherwise I truly believe I would still be waiting.

Quality of life when handicapped is crucial

Peter Purves Smith

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

I am quite worried and upset that I can’t get the possibility of being able to operate my IPaq with the Seetech eye controlled software because this was rejected without any consultation by RTD Het Dorp.

The gadget gives me a tiny bit of independence, which lets me turn on the lights, TV, monitor who is at and open the front door, use the phone, and operate bed, DVD machine.

When I got it in November 2010, it become quickly obvious that my hands were starting to get weaker and it would not be long before I would not be able to use it.

 At the time I thought that when I could no longer use my hands that a good alternative would be available for me to be able to still use my IPaq.

Now I can no longer lift my hands enough to use it or press, Richie helps me by operating the IPaq, which is not giving me any independency.

That can surely not be the idea, one of the things, I would like to be able to do, is add phone numbers and make calls to friends with Seetech software.

I think it’s vital that this be put in an advice; I find it odd that it was not sent to Agis.

Together with a speech therapist’s report, which I hope will be also useful to me; I could do with advice on how to optimize my vocal capabilities.

I have requested that the advice to Agis gets rewritten to include update of the progression of my MS, because I think it’s important.

I think it would be good to emphases how quickly I have become so severely handicapped, and how scary that is for me.

RTD Het Dorp, maybe technology geniuses, but just like many top doctors do not seem to have any empathy with their customers.

Which is why it’s important for me to work with a good sympathetic advisor, who would be capable of empathy with my situation.

This would be good and help me to learn how to operate the software with my eye movements, as quickly as possible.

Which is important for me so I can maintain some quality of life to keep me going, and prevent deep depression.

I am confident that the Rehabilitation Clinic will try to do everything they can.

Seetech

Breton Cadavre

Greta Knutson

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

Nothing has happened about the Seetech software, not yet; I hope that there will be some positive action soon.

It feels like I have been duped by RTD Het Dorp, who did everything to get the contract.

Their bid was not based on what I needed, that was never asked, and there was never attention for me the customer, it was all about sales.

I hope that a way will be found, so I get what I need and from HES, a good supplier who is interested in clients and what they need.

I hope that another manner is found and I finally get what I need so I can carry on writing while I can.

Sunny Tuesday.

Three Figures And A Bride
Oscar Mellor.
http://en.wikipedia.org/wiki/Oscar_Mellor

Woke up suddenly, as a tiny involuntary movement triggered off a series of spasms which were strong enough to wake me and keep me awake.

Welzorg came to collect my wheelchair between 8 and 9 this morning; the plan is that they move the base so that the wheelchair is more stable and less likely to tip over.

Amazingly the wheelchair was brought back quickly at 12 noon; I was expecting ir back at the end of the afternoon.

Lovely to see Welzorg working well and actually thinking about clients needs, I wonder if this is linked to them losing their monopoly to supply mobility aids in the Netherlands.

I have a feeling that it gave the company a nasty shock, they are now letting us all see what a good firm they are, so in tune with their clents.

RTD Het Dorp were suppose to send somebody to repair my Home Servant gadget, which has not been working for three weeks.

I hate not being able to adjust my position in bed or switch the light on or the TV, for the last 3 weeks have been totally dependant on Riche to do these things for me.

 No one turned up from RTD Het Dorp; no one phoned so I phoned them and was told the appointment was tomorrow.

I was called by them 2 weeks ago that I had to wait until Tuesday 2 August for them to resolve the problem, hopefully they will be here tomorrow.

Damp Thursday.

 


La Donna Impudica.
Angel Planells.
http://en.wikipedia.org/wiki/Angel_Planells

Today has been another wet, grey and unpleasant day which we brightened up by talking and laughing, enjoying each others company.

Our 10.00 appointment with RTD Het Dorp was re-routed to 13.00; he got here at 14.10 and was gone at 14.20.

While he was here he did a couple of quick things for me, he added the bell function to the IPaq, so I can call Richie easily, when I need him.

They previously, added that function to a button, that I had to hold down for at least three minutes, that I could not do because of lack of strength.

He explained how the telephone book function worked, which he did not do,

when he put it on the IPaq in January.

Then he was gone before I could remind him to either drill another hole in the Perspex table so the IPaq is closer which I need as I can hardly reach it where it is

Or come up with something to bring the IPaq closer so using it is not the struggle that it is right now.

He also did not do anything to check why the front door keeps opening without us pressing the button to open it; we think he hadn’t a clue.

Oh well, just as I thought another company that supplies aids for the handicapped who do not seem to listen to them or have their needs in mind

    

TwoTiring Appointments.

A World Without Truth.
Martin Soesbergen.
1960 Amsterdam.

Today has been a very tiring day indeed with two appointments, one for an on screen keyboard which maybe helpful for me.  

Appointment number two was with Annalies from ARCA, my advisor from the Amsterdam council and Harm, from Welzorg, to see if they can solve the problem with the wheelchair table.

The keyboard ‘guesses’ the words so I only have to type the first and maybe the second letter before it suggests several words I might want to use.

Then you type the number which is next to your chosen word and the word is inserted into the text.

Right now I have not got the patience for it, but I will do my best to give it a good go, right now I am typing bits myself and doing bits with the pre-emptive keyboard.

It is going better than I thought it would be right away so I am quite pleased, mind you, it is very much slower than typing the words myself.

Seems to be slower than thinking and typing at the same time now it feels like I am having to think twice, once for what I want to write and then twice trying to type using the on screen keyboard.

Or maybe it is thinking via the pre-emptive keyboard, it is supposed to have three languages yet it did not have the words like keyboard or pre-emptive.

Hopefully as I get used to the keyboard I will be able to find out more about the possibilities of the pre-emptive keyboard.

A Tiring Day.

Indefinite_Divisibility
Yves Tanguy.
http://en.wikipedia.org/wiki/Yves_Tanguy

What a very tiring day today has been, we were awake at 7.30 this morning, and Richie got me out of bed and into the shower between 08.15 and  08.30.

I was showered, dried and dressed by 09.30 and we were ready for our first appointment with an engineer from RTD Het Dorp who was going to remove the controls from the bed.

Then at 11.00 Beenhakker, the bed company would collect the old bed, once that was removed they would bring the new bed and put it in the bedroom.

Then RTD Het Dorp would attach their finger touch controls to the bed, sadly they were not here and at 11.00 Beenhakker were here but no RTD Het Dorp.

The men from Beenhakker were not amused, so I phoned and was told someone was on their way, they had been stuck in traffic and would arrive in 15 minutes.

Beenhakker were slightly mollified by the news and worked away to get their bit done before  RTD Het Dorp got here.

RTD Het Dorp arrived and took their controls off the bed and all was done quickly, then Beenhakker left with the old bed.

Everything was going well until Welzorg arrived two hours early for my wheelchair.

The delivery man left after talking to his planning department and agreed to return at 15.00 when the bed was done and I could go back to bed.

All went well and after doing my leg exercises I was back in bed very tired by 14.30, my wheelchair was collected at 15.00 .

So everything worked out well.

Relaxed Day Today.

 

Pursuit of Happiness 1997
From "South Carolina" Series

Kristina Pardue.
Abstract, surreal, expressionist artist.

Slept well last night, after the incredibly tiring day yesterday with two software nerds from RTD Het Dorp.

The appointment started with a bang when one of the men claimed that despite my getting a new bed soon, I had given the ok for them to add their device to the bed.

When I said I had not done so, he told me that was not true as his colleague said I had told him they could go ahead.

I said that there had been no communication about the bed, not until they had done it as they just came in and went into the bedroom without telling us anything.

I told them as soon as I was knew, that they had done the bed that I was getting a new bed; this was when he took my wheelchair table and drilled holes in it for the IPaq stand.

This was even after I told him it was not mine just on loan until mine was made to measure for me.

He ignored me and drilled four holes in the Perspex; Harm from Welzorg who came by the next day was very annoyed about this.

Luckily Johanneke, my occupational therapist was here for an hour from 10.00 to 11.00 so she went through my list of things with them that needed adjustments.

Good she was here as it got quite unpleasant when I was told that I was not being truthful and I countered that it was the colleague who was being untruthful not me.

Richie saved the day by reminding the man and us that he was there for business and it might be good to get on with it which they did.  

Great when they left at 15.00 and we were able to recover from the ordeal of two men being here for five hours.

Nice relaxed and pleasant day today.