All's Well That Ends Well.

 Roberto Matta.

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

We were very worried about Cyril last night because he could not walk on his right paw and it seemed to be giving him a lot of problems.

Richie called the vets as soon as he could this morning and they gave an appointment for 1200.

Before he left he got me my laptop so I was all set to look at my e-mail, open my blog and write today's blog post.

Just as I opened my e-mail program the laptop screen became black and shortly after the power went off.

I waited for a minute and tried to restart the laptop sadly without success, I tried it several times, then several more times before deciding to stop.

What amazed me was how calm I was about this happening, I think I realised that was little point in getting all worked up and upset when it seemed I could not remedy the situation.

The idea that my laptop was dead is not a nice thought however I decided I would just have to get on and really make an effort to learn how to use the Seetech computer.

I think learning how to use Seetech is not going to be difficult as I thought it would be, last night I decided that I was no longer scared but saw it as a challenge.

It is good that I thought that last night because it made it easier for me when I thought my laptop died, which it hasn't.

As I found out when Richie got back from the vets with Cyril, apparently Richie had forgotten to plug the laptop in to the electricity supply.

That explains everything and now I'm sitting here writing this on my laptop, Richie also reassure me about Cyril.

Apparently he has an infection in one toe which makes walking very painful for the poor little dog; he is now on antibiotics as well as painkillers.

He should get better in a few days so all is well Cyril as well is with my laptop, and all is well with the weather too, it is a beautiful sunny day temperatures of 20° and perhaps higher temperatures mid-afternoon.

It would be great if it got warm enough to use air conditioning which was installed last week on 9^th and 10^th of October.

Tilting Against The Windmills Of The Bureaucracy.

Roberto Matta.

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

 

Finally action, after winning my appeal the 15th of May, against my application for air conditioning being turned down three times by Amsterdam Council.

Tomorrow morning at 08.00 Andre, the man from the air conditioning company will be here to start installing our air conditioning unit

How typical of Amsterdam Council to keep me waiting from the 18^th of May when I received the official letter from the Amsterdam court.

Which informed me that I had won my appeal against Amsterdam council’s refusal of the air conditioning.

Which is absolutely vital to make life bearable during the summer months for me, as well as anybody else suffering from multiple sclerosis.

Making me wait until October to get this vitally necessary equipment installed, does indicate that Amsterdam Council has no interest in the welfare of its handicapped residents.

It is very worrying that the council department responsible for handicapped and disabled city residents is so negligent in carrying out its work.

I first applied in April 2011, it is taken me one year and six months to achieve a result, and I recommend taking action to everybody in my position.

It is good to let the authorities know that just because I am handicapped it did not mean that they could push me around without a fight.

Even though I can no longer physically stand up anymore, I can still stand up for myself and fight my corner against the insensitivity and apathy of the bureaucrats.

I recommend that everybody do the same and fight for their rights, and don't let anybody push you around.

Be assertive, they don't expect disabled and handicapped people to be assertive, they think we are a pushover.

A Pleasant Distraction.

Roberto Matta.

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

This afternoon Matilda my physiotherapist mentioned that it was cooler outside than it was in here despite the air conditioning being on.

When Richie leaned out of the window to check, he discovered that she was correct and indeed it was cooler outside than inside.

It was nice to turn the air conditioning off after four days of having it switched on in the doorway of the bedroom.

Most of the hot air generated by the air conditioning unit is removed by the extractor fan which is on in the toilet, some escapes into the hall.

Because we cannot install it properly so that the hot air goes outside, it becomes extremely hot in the hall which comes into the bedroom as well.

So I am not only warmer because I'm further from the air conditioning unit, I am also feeling the hot air.

Right now I am leaning dramatically to the left as if I were surfing, a pleasant fantasy maybe, sadly the reality is uncomfortable.

When Richie is back from the Park with the dogs I will call him immediately to correct how I am sitting, luckily I can still use my voice recognition.

There is something quite amusing about writing today’s piece almost lying down, despite all the problems I've managed to write it.

Mellow Moments.

Oscar Dominguez.

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

Despite the heat wave we are having right now I'm managing to stay reasonably cool.

This is marvellous because it means I don't feel terrible all the time, as I would do if we did not have this temporary air cooling solution.

The appointment for the installation of the air conditioning on Tuesday afternoon is something I'm very much looking forward to.

It would be brilliant if they can install a mobile air-conditioning unit that allows the hot air to be expelled outside, so the system can work properly.

Right now I think we're getting too much hot air inside, as we can't hang the ventilator tube out of the window.

Which explains why sometimes I feel warm air instead of cool air, however our system of having a small electric fan right next to me working in tandem with a conditioning seems to work.

Richie has taken the dogs to the park now, where I'm sure they're running around barking their heads off, which must be a beautiful sight.

The weather seems to be changing now, as the clouds have become very thick and there is now a dense cloud cover over the city.

It looks as if it could rain at any moment, seems that the brief summer heat wave is already coming to an end after only five days.

This is very sad for all those enjoying the hot weather, I wish I could enjoy it too and I do as long as I can stay cool.

There's nothing lovelier than seeing the street outside bathed in sunshine and hearing the mellow sounds of happy neighbours, I love it.

Now I'm looking forward to seeing Richie coming back from the park with those lovely dogs, when my darling Richie is back we will enjoy the evening together.

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.

More Good News

 Oscar Dominguez

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

Just had some good news from Richie's sister Aud, that she contacted Google right away to inform them about the malware problem on my blog.

The next time she wanted to read my blog she no longer got any messages about malware which is a relief.

Google must have acted quickly, it is good to know that they are proactive it is reassuring.

Today was the last day that we have the use of special lotion on our hair and body; we are hoping that it has been effective.

It be good to know that Richie is finally clear of this nasty bacteria which is obviously been the reason for his re-occurring nasty skin problems.

This afternoon I suddenly thought that we had not really celebrated the fact that I had managed to get air conditioning from the Amsterdam Council.

A remarkable achievement and I really can't wait to get the official letter so that I can get Richie to scan it and send it to Ango, the National organisation for the handicapped in the Netherlands.

What amuses me is how long it took for the penny to drop that I had indeed had an astonishing victory against Amsterdam Council.

On Thursday I was very calm when Anja told me and also when I told Richie the good news, amazing I did not realise then what an achievement it was.

Getting good news that the bacteria have been eliminated due to the lotion and the antibiotics would make it a hat-trick of good news.

Finally Good News.

Oscar Dominguez 

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

The other day I had an e-mail from Richie's sister telling me that when she tried to access my blog she got a warning that there was malware on it.

I received no warning from Google, nor has anybody else mentioned this to me, the night I got Aud's e-mail Richie could access my blog without getting any warning.

If anybody else has seen a warning about malware could they please let me know, and if they know how to get rid of it on the blog that would be even better.

I did have a warning about malware on my blog living with MS on Blog. com,when I read the information about the warning it became clear that there was no evidence of malware actually on that blog.

I hope that nobody else has had a warning about malware on my Google blog and it proves to also be a false alarm.

It is very worrying however as I would hate to think my blog had been hijacked and was being used to attack other peoples computers.

Yesterday my friend Anja called Mrs Yildiz from Amsterdam Councils legal department who is responsible for making the decision about my air conditioning.

Apparently Mrs Yildiz has decided to ignore the negative advice from Hans de Graaf, the investigator, and give me air conditioning.

She would not give Anja any details just that I would be getting air conditioning and it would be installed by a council department.

So I still don't know whether it is a mobile air conditioning unit or the whole apartment, I will have to wait to receive the letter informing me of the Council’s decision.

I don't care which type of air conditioning I get as long as it works well and I no longer have to endure sudden hot weather.

It has been quite a struggle to get Amsterdam Council to give me air conditioning.

As soon as I get a letter from the council, I will inform ANGO, the National organisation for the handicapped who I hope will be able to use this legal precedent to help other people apply for air conditioning.

So it seems that finally there is some good news which is really brilliant, it just shows you that if you persevere you will get a result.

More Waiting.

Oscar Dominguez

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

The weather is still miserable, at the moment I can hear thunder, the clouds are dark and the sun came out like a last hurrah before a storm.

This afternoon I had a pleasant visit from Anja, we had arranged it when she was here two weeks ago to assist me with some paperwork.

Today we had intended to brainstorm how to get Amsterdam Council to install the air conditioning.

Yesterday I received an e-mail from my case manager informing me that the council had decided to give me one mobile air-conditioning unit.

When Anja telephoned Mrs Yildiz in order to get more information about this, she was told she did not work on Wednesdays.

Anja will telephone her again tomorrow morning and see if she can obtain more information from Mrs Yildiz then.

I'm curious how they will install it, maybe they think we have ordinary windows under which you can place a mobile air-conditioning unit and hang the extractor tube out of the window.

This is not possible in our apartment as all the windows go from floor to ceiling,

the mobile unit that we have does not work well at all because we can't put it under a window.

The only place Richie could find was next to the toilet door, he cut a round hole in the wall for the extractor hose.

The hot air goes into the toilet where we have the extractor fan running continuously, this makes the toilet unusable because of the hot air.

The other problem is that the extractor tube is not long enough for the unit to be put in the bedroom so it’s near the door.

Which means it is not as effective as it should be if we could install it correctly, it will be very interesting to get more information tomorrow after Anja’s call.

While Anja was here she got a call from Paul Loos from De Alliantie my landlords, who she tried to contact on Monday about the whole air-conditioning saga.

She explained that we've now heard Amsterdam Council was going to give me one mobile air-conditioning unit.

However we have no further information, we don't even know how or even if they will install it, Paul Loos asked to be kept informed.

More waiting hopefully some answers tomorrow and who knows there may even be a resolution in sight.

The Never Ending Story.

 

Jan Toorop

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

The news last Wednesday of the council’s negative decision concerning installing air-conditioning, despite my winning the appeal on 16th of May, upset us.

Both my posts were about this news, after I'd written and published on Thursday, I decided to put everything out of my mind until the next week.

Later on Thursday night I was relaxed, ready to go to sleep with no conscious thoughts in my mind, when instantly I started thinking about the airco.

I told Richie, he said try to think of something else which I did, surprisingly it worked well, the thought was Yorkshire pudding.

A good blog friend Muff, put forward a suggestion of starting a petition, her other suggestion was to start a Face book page to protest against Amsterdam Council's callous and arbitrary decision.

I like both of the suggestions, a petition sounds good, so does a Face book page, trouble is I really haven't got the energy to do either; I don't have any objections to anybody else doing this.

I've identified three places to register protest against the negative advice concerning the air conditioning.

First of all there is the Amsterdam ombudsman for whom I have this e-mail address: info@gemeentelijkeombudsman.nl

The ombudsman is the place for all complaints against the council, here is also the telephone number 020 6259999 you can telephone between 10 and 12 every weekday morning.

The investigator for the Council in this case is Hans de Graaf, he works for Mozaak who assess handicapped peoples applications, and his e-mail address is Hans.de.Graaf@mozaak.nl.

Then there is the person responsible for the decision in this matter, Mrs Yildiz she works for the legal department of Amsterdam Council.

Telephone; 0031 20 552 7151/7512

When I had written this, I received an e-mail from my case manager, to tell me that the council had decided to give me one air-conditioning unit.

She congratulated me; the problem is one unit is not the answer for this apartment, as the windows are from floor-to-ceiling.

A separate air-conditioning unit needs to be positioned under a window which you open enough to hang out the extractor tube.

Funnily despite the council’s zeal for investigations, they did not bother to check whether an individual air-conditioning unit would work here.

When Amsterdam Council refused my application in 2011, we had a heat wave.

So Richie brought one of these units in the hope that it would help me,

sadly because of the windows we cannot use it.

Today is 10^th of July, the investigation was closed on 19^th of June and I have not heard from Amsterdam Council.

Keep A Balance.

Jan Toorop 

http://www.wikipaintings.org/en/jan-toorop

Since Wednesday the days were really difficult for me because it was such shocking news about the air conditioning that it got me quite depressed.

Which is not how I want to be, especially as depression is one of the side-effects of Multiple Sclerosis.

I'm sure that depression can cause a lot of damage; something that I want to avoid is much as I can, for a brief period the news totally demoralised me.

Somehow I will have to try to keep a balance and not get too involved with fighting for my rights, but on the hand I don't intend to give up any time soon.

The whole way this is being handled just shows what the Amsterdam Council thinks of my application for air conditioning, they seem to think it is a frivolous request.

Of course it is not frivolous it is a vital necessity, Wednesdays heat wave confirmed once again why I needed it.

If I didn't get physically sick and unable to function due to the heat I would not want air conditioning.

In my opinion air conditioning is one of the contributors to global warming and the destruction of our weather systems.

My earliest memory of air conditioning was in the 50s in Trinidad, when an American school friend took a little group of us to her house.

I remember thinking that her house felt like a deep freeze which I did not like; I also recall being offered strange cheese sandwiches.

It was cheese like I've never seen nor eaten before; bright orange cheese spread in a jar, the other option was hot dogs, also orange.

I remember tentatively trying both but I could not manage to eat them, I was very glad to get home to a delicious curry.

The only other time I've experienced air conditioning was in 1997 when I visited Trinidad for the first time since 1962 when we had left.

The other thing I never thought I'd be using here in Amsterdam is mosquito nets, which we both have so that we can get a good nights sleep.

That is much better than swatting mosquitoes all night which is something that we had to do, especially in the last 10 years.

Today I feel a lot better especially as yesterday and today it has been cooler which is made my life a lot easier.

My intention now is to relax as much as I can and enjoy the weekend with my Darling Richie and our three delightful dogs.

Shocking News.

 

    

Jan Muller, 1957.

http://en.wikipedia.org/wiki/Jan_M%C3%BCller_%28artist%29       

Today I'm recovering from an extremely humid day yesterday, as well as the shock of hearing the latest news about the air conditioning.

The friend, who represented me at my appeal hearing on 9^th of May against the Amsterdam Councils decision to refuse me urgently needed air conditioning, telephoned them yesterday.       

She wanted to find out for me when the council intended to get around to actually installing the air conditioning.

She was informed that another e-mail with more questions for me to answer was sent on 12^th of June, when they did not get a reply they sent a  letter on 19^th of June.

The letter was to inform me that the advice was negative and they were closing the case immediately.

Both my friend and I were shocked at this news, the only e-mail I received on 12^th of June was one from the investigator Hans de Graaf explaining his investigation.

In the e-mail he apologised if he'd upset me, that was not his intention however he did have to ask questions.

Apart from his apology and explanation there were no questions in this e-mail nor did I receive any letters in the post from either the investigator or the council.

This afternoon I sent an e-mail to Hans de Graaf, it was very short and to the point I just said no e-mail with questions was received on the 12^th of June neither had I had a letter in the post.

I asked for an explanation as to why the case was now closed, I wonder when I will get response, as its July I stand more of a chance of getting an out of office reply.

This really is an incredible state of affairs; it is as if Amsterdam Council were above the law by deciding arbitrarily to close the case.

I almost want to re-read the court decision of the 16^th of June which informed me that my case had been accepted by the court and I had won my appeal.

It was particularly horrible to get this news on the hottest day so far this summer, on Tuesday it was 18° and yesterday it went up to 28° and it was humid.

The humidity made me feel physically sick and I could not do much on the computer, my left index finger was floppy and could not function at all.

The air conditioning is a vital necessity for me now, yet Amsterdam Council seems to think that is not urgently needed.

They have Zero understanding about disabilities especially the effects of a debilitating disease like Multiple Scleroses.

Their only interest is in their careers not in the people they are supposed to be assisting, burocrats love ticking boxes and saving money.

If Only I Could Enjoy Summer Again.

Joseph Noiret
http://en.wikipedia.org/wiki/Joseph_Noiret

Today really is a day of two halves, from early this morning it has been another grey miserable overcast day, not a summer day.

This afternoon it was time to change my catheter, it was one month and two days since the last change, this time again it took ages.

I was lying on the shower chair for what seemed to be hours, Richie got the old one out with no problem which I hardly felt, but getting a new one back in proved to be a big problem.

Richie kept trying and trying various ways to insert a catheter, finally he stopped and got another catheter which went in at his first attempt, it was a thinner catheter.

Our ordeal was over and Richie could proceed with showering me and getting me dressed and back into bed.

After hours spent in the bathroom it was lovely to come back into the bedroom and find that it was looking much nicer outside then earlier in the afternoon.

At six o'clock the clouds were gone, the sky was blue and it was sunny, I hope the temperatures are not going to shoot up too quickly.

But it really is amazing because the weather has been early autumn weather since May and not at all the sort of weather you expect to get in the summer.

Today it feels like late April or early May when things are just starting to improve, instead of the 26th of June.

The trees around us have already got yellow leaves, I've been hearing from friends that flowers have not blossomed and other plants have gone yellow.

It really feels like autumn rather than summer, in some ways I'm not unhappy about this as I still have not heard when the council will finally install the air conditioning for me.

Mostly it is out of my mind and then every now and again it pops back into my mind, especially when the weather looks like its improving.

I'm dreading the temperature rocketing from 18° today to in the 30s tomorrow, it usually happens like that and I can't cope with it any more.

Sad that I can't cope with hot weather, which is dreadful for me, it really is, especially as I have always loved it being hot, being a Trinidadian I adored hot summers.

At the first sign of good weather I would be straight into my shorts and skimpy T-shirt as soon as I got home from work.

Nowadays when it is hot, it makes me feel very uncomfortable, so much so that I yearn for cool weather which surely can't be right for a Trini, how I wish I could still enjoy the heat of summer.

I Won't Hold My Breath.

Thomas Bak

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

This afternoon was my long-awaited appeal against the decision of the Amsterdam City Council to refuse my application for air conditioning.

When my friend Anja, phoned the court last week Thursday they told her that  I could not be present via Skype or video because they were inadmissible in the Amsterdam court.

I was told that they would however phone me during the hearing and ask me questions.

When Anja was here last Thursday, I gave her letters from Janneke Stolwijk, the Rehabilitation Clinic doctor and from Milou Sloof, the nurse, who is looking after my open pressure sore scar.

As well as a statement from me listing all of my many problems with temperatures above 22°.

In my statement I explain that as our windows are from floor to ceiling and open inwards this means we cannot use sun blinds.

It also means we can't buy a separate air conditioning unit because we can't place it under the window and let the tube hang out of the window as you need to do.

I also explained that my problem is the air temperature and not sunshine, seeing as our apartment faces to the east and to the north it means that we only get sunshine up to 09.00 in the morning making sun awning redundant.

From lunchtime I was waiting quite apprehensively for the court to phone me, sadly they couldn't be bothered to keep their promise to phone and ask me any questions or hear my side of the story.

The hearing was at 14.40 this afternoon no one phoned me, until 15.20 when the phone rang and it was Anja to tell me it was all over and I would receive the court’s decision around 22nd of June.

While I have never had much chance of success, it was slightly disillusioning to hear my friend tell me that they only allowed her to read a tiny section of my statement, and they were still harping on that my problem would be solved with the use of sun awnings.

As if they would stop the heat of the air temperature which causes me all the problems in the summer.

Well who knows maybe the court officials will actually go away and read the documentation I provided and with an open mind make their judgement.

I won't hold my breath.

Might Even Win.

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

Recently I was getting myself worried about some paperwork that I felt I wouldn’t get done on time.

Then yesterday I realised that I did not need to panic as I would get the tasks completed on time.

It amused me when I discovered that I was getting in a right flap about very little, typically I was getting myself worked up for nothing.

I need to get our tax returns in, at the moment I'm waiting for a couple of documents that I have to include.

What made me even more cheerful, was finding out that I could use my tax return from last year as a template for this year's.

Most of the items are the same, just some numbers have to be changed, there was me getting all upset.

The other thing that really relieved the pressure was hearing from our acquaintance, an accountant who does our tax for us, that I have until the second week in May to hand in the documents to him.

On Wednesday I had a visit from two friends, Cecile and Anne, which was really good as it turned out.

 I mentioned that I was really concerned that would not be able to attend my appeal against the council refusing me the air conditioning.

Saying I didn't think that our friend Anja reading out a letter from me describing all the problems I have when it gets warm in the summer would not be effective.

Cecile said immediately that if I prepared my statement then she would come round before the hearing and film me in bed.

That way the court will be able to see exactly what my situation is, and perhaps that might persuade them to overturn the Council’s decision.

While I have absolutely no belief in the justice system, nevertheless I shall give it a good shot, and who knows I might even win, that would be excellent.