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.

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.

Calm And Positive.

Joan Miro.
http://en.wikipedia.org/wiki/Joan_M3ir%C3%B

Well the good news is that Maurits my occupational therapist has spoken to Agis; they have said that Herman needs to send them a new bid asap.

He needs to write clearly on it, that, the application had already been agreed; I was merely changing the supplier.

That’s great news, it really is, only shame is that it will take some time, maybe a few weeks says Maurits, surely if they already said yes, why can’t it happen quickly.

The answer is no, because they are burocrats, they could not possibly give a quick response not when they can take their time.

I have suggested Herman should remove the voice recognition and any mention of the Home Servant.

Once Agis gives the green light, then Herman can add the voice recognition, the Home Servant for which we will pay, it will be well worth it to be able to keep communicating.

Today I also got the annoying news that Aquarius had only just sent in their bid, for the bed support to Agis, Kees was here on 5th November, he knew i need this urgently, yet took 24 days to send the bid.

Welzorg have recently taken over the company, and immediately the quality has gone, shame for Aquarius and their employees who had such a good reputation.

After getting upset at how annoying it is to have to constantly put up with such treatment it is intensely frustrating and rather annoying, I decided to keep calm and positive.

A Good Start To The New Week.

Pierre Roy.

http://en.wikipedia.org/wiki/Pierre_Roy_%28painter%29

Today I got the new wheelchair seat, it is very good, it makes a big difference, nice to be sitting straighter and higher in the wheelchair. 

Lovely to feel I am more stretched out, I no longer have a potbelly, actually I never had one, it looked like I did because I couldn’t sit up straight enough.

Shame Johanneke, my previous occupational therapist, had not noticed that I needed more support, which a new seat would have provided.

Other things should also have happened last year, such as trying out the electric arm support, it supports your arm so you can eat, read, type.

The IPaq gadget I have that opens the doors, adjusts the bed, turns on light, TV, operates the telephone I should have got in 2008 not November 2010.

Johanneke it seems did not research the support cushions well; she did not look for another better solution then Quattron who don’t have suitable support for me.

I spent months waiting from January until July to get the support cushions; since I have them they have been ok but not as useful as I had hoped.

Maurits does not think the cushion supports me; he suggested a couple things we can do to help me maintain a sitting position, while he finds a better solution.

Edith, my council mobility advisor was here too, she noted that the wheelchair arm supports are too high, neck support needs adjusting; she will see they get done, a good start to the new week.

A Good Appointment With Quattron

Sleep.
Nikos Engonopoulos.

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

Today the weather is pleasant, sunshine, a nice breeze which makes the humidity bearable; we have several windows open so there is a good airflow.

We also had a good appointment with Dennis from Quattron and Maurits, my occupational therapist, Dennis was very attentive.

Maurits seems a very pleasant efficient therapist, I enquired about Johanneke, and he told me she is still not well.

I hope she gets better soon, I am glad Maurits has become my therapist during Johanneke’s absence.

I explained what needed to be adjusted on the support cushions; Dennis took measurements and made notes.

We agreed that Dennis would collect the support cushion on Monday 15 August; it would get adjusted and be returned here on Wednesday 17 August.

So only two days without support cushion, I am sure Richie will be able to improvise and prop me up successfully for those two days.

Richie has gone to do our shopping, after crying for awhile for his missing friend, Cyril went back to bed.

Feels good sitting in the front room, we had an early start so that I was showered and dressed ready for the appointment, good to get this done early in the day.

Waiting.

1986

Bryan Charnley.

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

After waiting for over two weeks for the appointment from Welzorg, I got a call from them this morning to arrange an appointment.

The woman that called was very friendly, when she mentioned my falling out of the wheelchair, I recognised her voice.

I spoke to her when I called Welzorg, to thank them for their quick work unbending the bent table support on the wheelchair table.

She was amazed that I was calling her to thank her; she told me that she had never once been thanked in 5 years of working for Welzorg.

That is a shame, this convinced me that thanking people was a good thing to do; I have no problems complaining, so I need to be aware that saying thank you is good.

It is important, not just to complain but to remember to say thank you, when it is in order, this morning’s call from Welzorg was proof that making that call was well worth it.

Nice to get a friendly call, especially from Welzorg who are not known for being a friendly company.

Today I got a mail from Maurits, my occupational therapist; he is standing during Johanneke’s illness.

He has made an appointment with Quattron’s Dennis Klein, to see what adjustments still need to be made, so that the support cushion will support me adequately.

Finally The Cushion Has Arrived..

Marriage.
Jindrich Styrsky.
http://en.wikipedia.org/wiki/Jind%C5%99ich_%C5%A0tyrsk%C3%BD

No e-mail or telephone calls from Johanneke, my occupational therapist or her colleagues despite sending e-mails since Friday.

I have been left flopping over to the left; constantly almost lying on my left side makes my life extremely difficult.

Eating, drinking and typing are difficult hanging to one side; this situation is so difficult without the support cushion.

Without the support of the cushion I can do nothing, not even hold the bag of THC vapour up to my lips.

So sitting in bed writing my blog post will not be possible until I have the cushion, hopefully that will be soon.

I hope the cushion has been reduced in height so that the table will be able to fit over it and can support me during the day when I am sitting.

If not it will be no use to me, I can’t believe that it has take so long, 5 months 7 days since the appointment with Dennis Klein and my OT on 26 January.

They told me I should get it quickly; I was given to believe that in March I would get the cushions.

At 16.00 I got a call from a colleague of  Johanneke’s that she would bring the cushion at 17.45, she did and it’s here, I will try it out when I go to bed.

Put It Out Of My Mind.

 
Ballons, 1970.
Foni Tissens.
http://en.wikipedia.org/wiki/Foni_Tissen
 

Still feel shattered by what should have happened but sadly didn’t happen yesterday, I had been looking forward to 1^st July all week, and finally getting my support cushion.

I could not believe it when I phoned Quattron yesterday to hear that the support cushion had been sent, just not here but to the rehabilitation clinic on the Overtoom on Monday.

This was not the promise made to me by their representative Dennis Klein on 24^th June, he assured me then that the cushion would be adjusted and back with me on 1^st July.

I hope it has been adjusted as otherwise I will have to wait to get it after Dennis is back from his holiday on 25 July.

This process started on 26 January, looks like it maybe 6 months before I get the support cushion.

I hope that I will be pleasantly surprised and my Occupational therapist Johanneke will be back at work next week and will bring me the cushion.

That would be wonderful, almost do not believe that this situation will be successfully completed next week.

Even better if the height of the support cushion has been reduced, I am worried that the adjustment was not communicated just like where the cushion should have been delivered.

For now I will try and put it out of my mind and concentrate on enjoying the weekend by not thinking abut this until next week.

Trying To Stay Positive.

Piet Ouborg.
http://en.wikipedia.org/wiki/Piet_Ouborg

Today at lunchtime I phoned Quattron to find out when the support cushion would be here and was told it had been sent to the Rehabilitation Clinic on Monday.

I said this is not the arrangement made last week Friday, it was agreed that the cushion would be brought here.

The man from Quattron said this was not known to him, it had been sent to my Occupational Therapist.                      

 I can’t believe this has happened, especially as the arrangement made last Friday was that it would be adjusted on Monday and delivered back to me today.

Finding out that it has been sent to the clinic on Monday is upsetting, my Occupational Therapist should have informed me it was there.

I heard nothing, only a mail from her Wednesday late to say she was sick and would not be at work for the rest of the week.

So much for getting the support cushions today, more waiting and I can not be sure that the cushion got adjusted on Monday.

Sounds like it just got sent, hope that it Quattron did take 10 cm’s oiff the height of the cushion, so I can use the cushion for support when sitting up.

If they have not made the adjustment the support cushion is no use to me, I am trying my best to stay positive and optimistic.

Really hope that I will not be disappointed again next week,

Getting There Slowly But Surely.

 
The Past, 2006.
Anastasiya Markovich.
http://en.wikipedia.org/wiki/Anastasiya_Markovich

So far there has been no phone call to cancel the appointment, like a month ago, when Quattron cancelled their visit one hour before.

Abit of a shocker, I am sure they could have let me know before, an hour before the appointment was quite upsetting.

Guess today will be different, looking forward to getting the big support cushion.

I will try to give Johanneke the benefit of the doubt, but feel strongly that I need an OT that supports me, and who communicates with me.

Johanneke got here early so we could talk; I explained that the lack of communication was upsetting.

Made me feel that I was the last person to know what was happening, I said I preferred to be directly informed about things affecting me.

Johanneke has promised to keep me informed so I will carry on with her, it was good to talk it out with her.

Dennis arrived late, the cushion is ok, it gives me the support I need, but was too high, so would not be able to use the table and laptop.  

it needs some adjustments which will be done Monday and I should get the support cushion back next Friday.

A Mere Formality.

 Hammersmith, 1946.
Julian Trevelyan.
http://en.wikipedia.org/wiki/Julian_Trevelyan

I may request another occupational therapist as I am unhappy with my current ones seeming lack of consideration.

Think I will discuss this with Richie see what he thinks and whether he thinks I can go on with Johanneke.

I feel dubious about being able to carry on, really am finding it difficult to deal with someone who seems not to understand that having a progressive disease means swift action.

Johanneke led me to believe at the joint appointment with Quattron, on 26th January, that she and Dennis Klein would do their paperwork quickly.

She told me that getting the o.k. from Agis was a mere formality, and I should get the urgently needed support cushions quickly.

The first shock was getting an e-mail from Johanneke at the end of February to say she had just sent the paperwork to Agis for their approval.

When I queried this I found out that Dennis sent her his paperwork on 28^th January, Johanneke got the supporting letter from the doctor the week after.

Johanneke’s part of the paperwork was finally completed at the end of February, at the end of March Agis said yes.

The cushions went into production 2nd April; I will get them finally on 24^th June, so much for a mere formality.

Treat People With Respect

Portrait de Maria Felix
Bridget Bate Tichenor.
http://en.wikipedia.org/wiki/Bridget_Bate_Tichenor

Yesterday evening I received a mail from Johanneke, my occupational therapist, I have been mailing her for weeks, without getting any response.

On the Thursday I sent her an e-mail requesting she phone me the next day, I thought a phone call would be a good way to discuss the situation with Quattron, she did not phone.

The only e-mail I had was last Friday, telling me Quattron had called her and the support cushions would be delivered on 24th June.

That was all, nothing more, I responded and queried why it would take another two weeks and asked if she would be here too.

No response, repeated the question in a few mails during the week again nothing, until yesterday.

Johanneke finally lets me know why it was taking two extra weeks to get the urgently needed support cushions.

The delay was because the 24^th June was the only date both her and Dennis Klein could agree on.

Could this not have been communicated in last week Friday’s mail, had I been informed immediately the situation would have been clear.

I was angry and mailed her right away, saying that being fully informed is important especially in my situation, felt she had attempted to patronise me.

Feel very disappointed that my occupational therapist can’t treat me correctly by keeping me informed.

If my therapist can’t treat me like a normal human being and show some respect, how can we have a good working relationship.

Many Appointments To Get Anything.

Monomakh Hat.
Oleg Korolev.  
http://en.wikipedia.org/wiki/Oleg_A._Korolevz

Well I guess as there is no news from Johanneke, my occupational therapist or Dennis Klein, from the support cushion suppliers Quattron, I will have to wait until next Friday.

Shame there is no flexibility, would have been great to have got the support cushions immediately that the ‘conflict’ between Agis and Quattron was resolved last week.

Funny despite being disappointed so often since 2006, things like this still get to me, when I was diagnosed in 2006, I thought naively that I would receive the help I needed.

Since then time and again the lack of consideration, care and often total disinterest to give help has been amazing.

What gets me is how the budgets for supplying aids to the disabled are strictly guarded, and yet so much money is spent on the peripherals, such as appointments.

Before I can get an appointment with a supplier, I have appointments with occupational therapist and then case manager and consultant.

Next week I have an appointment with Annelies, my local council advisor and Welzorg

to discuss what adjustments I need to the seat.

No problem with that, what I find strange is the appointment will, take place without Ruud from Summit, who knows precisely what adjustments are needed for me to sit well.

       

Hopefully the conclusion is an appointment with Ruud, which will result in adjustments which allow me to sit better in my wheelchair.                      .

Thumbs Up For Welzorg And Down For Quattron.

 
Raoul Santoserpa.
http://en.wikipedia.org/wiki/Raul_Santoserpa

What a week, tumbling out of the wheelchair, that has shaken us both up alot, guess we will have to get over our shock and get back outside.

Then getting calls from Agis, out health insurance Company, because of letters of complaint received, unhappy that I have been waiting for the support cushions since February.

Agis called Quattron, the supplier, who told them they would call me on Thursday to make an appointment to deliver the cushions.

They did not, when I called them on Friday, they denied that they had agreed to call me; they could tell me nothing, nor would they give me an appointment.

 Then I received an e-mail from Johanneke, my occupational therapist, informing me that Quattron had called her and told her they would deliver on 24^th June.

Amazing they could call her, but not me, not even an e –mail, once the support cushions are here I hope that I no longer have to deal with them.

They seem to not care about their customers, at least that is the impression they have given me, this was amplified by the total disinterest of whoever I spoke to on Friday at Quattron.

Welzorg on the other hand were great, they sent someone out on Friday afternoon, who straightened the bent support for the wheelchair, which meant I can use the wheelchair.

Brilliant response from Welzorg, I was very happy to thank them for their help, support, they really impressed me, not so Quattron, I hope they become more customer orientated soon.  

  

The Waiting Game.

 Naive Art.
Ricardo Ponce.
Biography: He received his first formal training at the Elementary School of Fine Arts (Escuela Elemental de Artes Plásticas “20 Octubre”) and the Academy of Fine Arts (Academia de Artes Plásticas “San Alejandro”) in Havana.

He was born on September 21, 1968 in Puerto Padre, Las Tunas Province. He is a member of the ACAA, the Cuban Association of Artists and Artisans and the AHS, the Hermano Saíz Association.

A beautiful sunny day today, looking forward to going out, I hope Riche will get the hang of the temporary new joystick.

Still no news about the support cushions that I was supposed to get on Tuesday, an hour before the appointment my occupational therapist rang to cancel the appointment.

Johanneke was angry to have to be the one to tell me the bad news; luckily she had the faxes with agreement from my health insurance that we could order the cushions.

She hopes that she can persuade Agis to pay for the cushions, as per the agreement with them.

That was in March, Johanneke then asked Quattron, on 2^nd April to make the support cushions.

I  was led to believe this would take two weeks, finally some weeks ago I heard they would be  here on 17^th may.

Feeling let down by them all, February we had an appointment with a representative from Quattron.

Dennis told us once Agis gave the go ahead they could be made in two weeks; Johanneke said getting the ok from Ages was a formality.

Now Agis and Quattron have a disagreement and until that is resolved no support cushions for me or anyone else.   

Rainy May Wednesday.

Pedro Friedeberg.
http://en.wikipedia.org/wiki/Pedro_Friedeberg

A mail just arrived from Johanneke, my occupational therapist, informing me that the support cushion for in bed will be delivered on 16 May.

This was applied for on 2 February, I got the approval in March for it to be made for

me in April.

Friday 2 April, Johanneke phoned the company Quatron and heard it would be ready in 2 weeks.

Now it will be ready to be delivered on 16 May, amazing, also that I had an appointment on 30 March for a lighter joystick.

I was promised a quick resolution, a quick appointment for the lighter joystick to be installed, since 30 March not a word.

Wonderful world of expensive time consuming burocracy, which is not set up to provide swift solutions for handicapped people like me.

Seems once again I get to be patient and wait, if only the progression of my ms could wait then there would be no problem.

I have sent heaps of mails, so far no news from anyone, no appointments and no sign of my getting the lighter joystick anytime soon.

This would be good to get while my hands/arms still function, I fear that it will be too late as everything else is, but who knows maybe I will be pleasantly surprised.

My Last Appointment For This Week.

 
'La Mirada Eterna' circa 1947.
Angel. Planells.
http://en.wikipedia.org/wiki/Angel_Planells

My last appointment of the week was at 13.30 this afternoon with Johanneke, my occupational therapist.

It was a useful meeting with Johanneke; we discussed various things such as the support I will be getting for sitting in bed.

We also talked about the software I will need to keep me online, Johanneke is going to make an appointment with HES, to have a look at Brainfingers.

I reassured her that I am not fixated on Brainfingers above all else, but would like to see what it has to offer.

Then if it is nothing we can get in touch with Frans again, from RTD Het Dorp, who let me try out the onscreen keyboard that was not what I need.

I think that I reassured Johanneke that I want to check out everything that is available so I can make an informed decision.

Johanneke seemed to be pleased with that and reassured that I was keeping an open mind

Shame it has taken so long to get to this point, but that does not really matter now as long as there is progress being made in finding the right software so I can keep writing my blog.

Today has been a cloudy, grey, damp day which got better towards the end of the afternoon when the clouds started to disperse and the sun came out; the weekend is all set to be lovely weather.

Sunny Sunday.

Edgar Ende.

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

After a pretty relaxed week this week, which was very pleasant, especially for Richie who was quite exhausted after my birthday, we will have a busy week next week.

Monday will be an early start, so Beenhakker can collect the shower chair so that they can modify how the cushion is tied on the chair.

Tuesday they bring it back early and we plan to make an early start and go out, that is the plan for the week so I can get out lots when the sun shines.

Wednesday Annelies and Welzorg are here about a better joystick for the wheelchair, Thursday the Home Servant people will be here to fine tune he IPaq and my occupational therapist is here on Friday.

 

The clocks went forward in the early hours of Sunday morning and very befitting for the first official spring day it is a lovely sunny day today

Richie and the dogs have gone to the park for abit of fun for the dogs, Cyril also hunts and catches flies, just like Marleen, it is comical to see the dogs hunting tiny flies.

I shall be happy when they are back as I am looking forward to a nice shower and clean clothes.

They will not be long now and when they get back both dogs will charge in here to show  me how happy they are.

Then they charge out to see Richie and demand their dinner, lovely to hear them being such happy and relaxed dogs.

Another Good Appointment.

"Ridicule is Nothing to be Scared Of’’ 2006.
James Gobel.
http://www.marxzav.com/artist.php?artistID=26#

Had another very good appointment at 13.00 today with Denis from Quattron and my Occupational Therapist Johanneke.

Denis measured me up for cushions, they will give me a stable position in bed, look forward to that, should get them in March.

It was only an appointment of 1 hour and 30 minutes, but I feel very tired now and so does Richie.

Be good to get these cushions, as I can not maintain a stable position in bed, and have spent ail afternoon collapsed. to the left.

This is very tiring and creates a lot of unnecessary stress which I do not need, not with all the stress of having Progressive MS.

Luckily Richie has found some more pillows and cushions and I am sitting alright now.which is brilliant after the last couple of hours of discomfort.

Off for a shower now and before that, maybe even a haircut, that would be pleasant, as my hair isa getting long on top.

See if Richie is feeling up to doing my hair tonight, as he seems to be getting a cold, hope I do not get it too.

]

Looking forward to a quiet relaxing evening now and a delicious dinner..

Another Good Appointment.

 
Jan Steen.
http://en.wikipedia.org/wiki/Jan_Steen


This lunchtime had an appointment about a neck support so that I can sit without any stress or strain to my neck.

The appointment was with Annelies from ARCA, Harm from Welzorg, Johanneke my occupational therapist and a man, and did not catch his name, from the suppliers of the Focal neck support.

It was a good appointment, certainly after the initial bumpy start, due to me worrying about what the headrest would be like.

 As it is it is excellent, gives me good support but leaves my quite free, was worried it           would be something constrictive like a neck brace but it is not it is very good.

Great to get such a useful support, another good thing is that the neck support was left with me to try it out.

 Have to let Johanneke know at our Friday appointment if it is good for me or not, nice that I can try it out in my own time.

 Better than having to make a snap decision as usually is the case, hate those moments as itis very difficult to say within minutes whether equipment if suitable or not.

Which is normally the case, hate having to say whether something works or not after 5 minutes.

Today things were different and I am sitting here now with my new neck support which I can test drive until this Friday.