Appreciation For Welzorg's Help.

 
Joseph Gonzalez.

Thursday I had a nasty accident, fortunately I was not hurt, the wheelchair had tipped forward when we crossed the zebra crossing by the Hema.

Perhaps it happened because we crossed too fast, the junction is reasonably good, and the pavements at the crossing are nearly flat to the ground.

The wheelchair tipped forward, and had rolled over; fortunately I did not fall directly onto my head.

I rolled out of the wheelchair on my left shoulder and that had protected my head, plus my Amsterdam cap had protected my head.

Ten concerned people helped us, firstly someone who was a doctor checked that my neck was okay, and then Richie got alot of help to get me back in the wheelchair.

The only damage was to the metal support under the table which was badly bent during the fall.

Richie could get me home with much effort, we were so glad when we got indoors.

This means it is not possible for me to go outside with a working surface, which hangs beside the wheelchair, what a calamity, especially because it’s Whitsun here this weekend.

I hope that I can be helped tomorrow, so that I can go outside that would be fine.

Yesterday I had a good experience with Welzorg, when I phoned their emergency service.

First they proposed to come by on Tuesday, when I said then I can not go out for 4 days, I got an appointment between 12 and 17 the same day.

I was happy and a nice fitter called Michel came by at 13.15, he straightened out the bent support, I thanked him and I also rang the emergency number at Welzorg to thank them also.

The woman who I spoke to was astonished and very glad; she said that no one had ever thanked her in all the years which she worked at Welzorg.

I had made her day and weekend. 

She said she told her colleagues who were also glad, nice to make people happy by thanking them and showing that I appreciated their help.

In Memory of Sherry's Daughter Nicole.

Vincent van Gogh.

Remembering Sherry’s daughter Nicole who died 2 years ago today.

http://wordsalads.blogspot.com/
Please visit Sherry and leave a supportive comment for her.



Nicole:
11.7.74 to 6.10.09




















p

The Good News Is I Am Fine.

Trois figures - Les voyeuses - 1949
Alfred Georges Regner.
http://en.wikipedia.org/wiki/Alfred-Georges_Regner

This morning the woman from Agis called and left a voicemail message that she had spoken to Quattron, there had apparently been a ‘ little’ misunderstanding.

This was now sorted; Quattron said they would call me today to make an appointment to deliver the support cushions, sadly they have not phoned.

I can’t believe that this ’ little ’ misunderstanding that has meant discomfort for me, and I am sure many others too.

There was no word of an apology, that I had to wait a month, for the support cushions that I urgently need.

But thanks to Richie and about 15 assorted cushions, pillows that he places around me, I have managed to somehow sit in bed.

I shall call Agis tomorrow and request a fuller explanation, than the brief voicemail message I received.

That I got a call is all thanks to letters of complaints about my not getting the support cushions, complaints are not something Agis would like receiving.

We went to the market this afternoon which was great fun, we stocked up on Greek treats, on the way home crossing the road abit too fast caused me to fall out of my wheelchair.

We have no idea how it happened, one minute I was sitting, the next I was sprawled in the middle of the road.

Ten helpful people helped us, some stopped the traffic, one was a doctor who checked I was ok, then they helped Richie get me back in the wheelchair.

We went home, the wheelchair table hanging next to the chair, the bar supporting the table, was the only casualty and will need fixing before I can go out again.

That is not good as it could take ages, its Whitsun weekend and my Welzorg contact person is on holiday until June 20, the good news is I am fine.

It Is Inspiring Visiting Blogs.

 
Son et lumiere (1976)
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

I was inspired reading today’s post by Rhapsody in which she says

 ‘’ Life is filled with ups and downs. The trick is learning how to be fluid and move continually between the ebb and flow’’

A visit to Rhapsody Phoenix’s blog @ Rhapsody Phoenix Authentic Expressions is well worth it, I like going there and reading her posts.

http://rappingonamelody.blogspot.com/2011/06/life.html

I recently met a blogger called Ricky @ Cubanrick he has also been diagnosed with MS.

http://cubanrick.blogspot.com/  and Nicole @ My New Normals …Looking For Normal.

http://www.mynewnormals.com/  who also has MS.

Also met Mike @ This is my life and all that goes with it, Mike also has MS

http://franko2366.blogspot.com/

Also met another blogger Chib @ Hadubini - My-o-scope

 http://ebchib.blogspot.com/

It is always good, I think to meet other people, and read their blogs, I find it stimulating.

I am also enjoying visiting blogs I already know like Ana @ Hella Heaven

http://hellaheaven-ana.blogspot.com/ and Mitch @ Enjoying The Ride

http://www.enjoyingtheride.com/ and Muffie’ @ Kaleidoscope Muff

http://kaleidoscopemuff.blogspot.com/

Very good day today visiting other blogs, I have enjoyed visiting and reading their posts.

I hope tomorrow will be a good day and I will get good news from Agis that at last I will get the support cushions, which I urgently need.

That would be the excellent news I need this week.  

Maybe Good News On Thursday

 
Football, 1953.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

This morning I got a call from someone from Agis, my health insurers saying she was phoning because they had received some complaints.

The complaints were about me not getting my support cushions; she wanted to know why that was.

So I told her that the reason that I have not got them was the disagreement between Agis and Quattron.

She seemed surprised at this, as if she did not know about any disagreement, she asked me to explain.

So I told her that Quattron were suspending supplying anything to anyone until Agis paid them again, she seemed extremely surprised at this.

She said that could not be as they had agreed to pay for the support cushions and promised she would sort everything out.

I also was promised that this situation would be resolved asap; she said she would call me again on Thursday to let me know.

So finally nearly a month later, after being disappointed at being let down so badly an hour

before I was to get the urgently needed cushions, I may get them after all.

I will not get excited until I know for sure, hopefully Thursday this week, that would be good news.

I Will Appeal This Decision.

The Snake Eater, 1987.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

 

Yesterday’s post was that communication is important; sadly not everyone thinks the same.

On Friday, I received 2 letters, one from our landlord with a new appointment for them to inspect the apartment.

We had an appointment on 31 May, no one came, no one bothered to call  and even the letter with the new appointment had no apology.

Making a new appointment was not easy; there was no understanding that an appointment between 8 to 12 midday was not ok for us.

Got one between 12 to 16, after I explained my situation, I was told a note would be made to come by at 14.

Strange after receiving 2 appointments for 14.10, I could not make one for the same time.

I mailed MOZAAK asking for their reasons of refusal; they phoned to say I should phone the council for this information.

After hanging on the phone for more than 30 minutes I filled in an online form, then I heard from my case manager what the reasons were for refusing my application.

 Apparently its because we do not have blinds/sun awnings, that’s why I was turned down, how they help me on a hot night, when its too hot for me to sleep, I do not know.

They did not even contact my doctor, although they asked for my permission to approach her for information.

Mozaak seems to have even ignored their own doctor’s advice, who said temperature has a huge effect on people with MS.

I will appeal this decision, hopefully successfully.                            

Communication Is Important.

Several Personages, 1984.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

Writing everyday has become something I do almost without thinking, by that I mean I no longer worry or wonder what to write.

Doing it everyday seems to have taken away that worry; there is always something to write about.

Starting my post happens without any hesitation, it happens almost organically, I make use of everything that I encounter.

I have always been interested in a wide range of topics, both on a macro as well as micro level.

My need for information has not been diminished by my being handicapped, so glad the internet is there to give me all the information I need.

Daily posts on my blog are an important part of my life, not being able to be independent and go where I want, makes writing vital for me.

I was very happy to visit every single blog on my list, this took me a whole week, and it was an enjoyable thing to do, good to read other blogs again.

Because it had been many months of not visiting anyone I felt quite bad that I had not been visiting my friends.

Last year Spike, our lovely dog suddenly being so ill in November and dying in December, plus pneumonia in January, took until March to fully recover meant no visits.

Since March I have been spending more time in my wheelchair so only wrote my posts, having visited everyone again, I am determined to make time for visits.

Important to communicate with friends and read their posts, all part of giving and getting support.          .

My Interest In The World I Live In.

The Golden Egg, 1967.
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

Beautiful sunny day, we both woke at 11; not surprising as we stayed up late and watched an archive program of The Old Grey Whistle Test.

A concert by Ian Drury and The Blockheads; what a wonderful performer Ian Drury was, really mesmerising

I remember seeing him on BBC 2 in the late seventies, I was just leaving to go to the pub when the program started, I nearly missed the pub.

I fell in love with Ian Drury that night, seeing him last night made me feel the same. 

He was good, I remember how good it was, that he sung in his own voice and not in the usual bland transatlantic voice so many others sang in.

It was a real breath of fresh air to hear Ian Drury singing in this own authentic Essex voice; I believe it encouraged many other bands to do the same.

Many songwriters were given encouragement to sing in their own voices with lyrics about their lives.

Bands like Madness also sung in their own voices, it was good to listen to them telling their own stories.

Telling my own story is what I try to do everyday, I do not only write about my MS, as that would not reflect my interest in the world I live in.

A Relaxed Day.

Endre Rozsda.
http://en.wikipedia.org/wiki/Endre_Rozsda

A relaxed Friday, the sun is shining, many people seem to have taken today off and gone away for a long weekend.

I received a letter from MOZAAK that they advised the local council not to give me air conditioning, no reason was given for their refusal.

Of course I will appeal the decision, I shall ask my doctor to give me a copy of the letter she sent to back up my application.

I shall also be asking MOZAAK to let me know the reasons for turning me down so that I know what I am appealing against.

It is quite incredible that they have not put their reasons for their refusal in the letter turning my application down.

How typical of burocrats to treat people with such lack of any respect and with such contempt, next week I will do what I can to successfully appeal this decision.

Now it is Friday early evening so I intend to have a pleasant evening and a relaxing weekend, with a visit to the Ten Cate market.    

Richie and the dogs have just got back from an hour and 30 minutes running in the park, now after their dinner they are happy relaxed dogs.

Richie is starting to prepare the ingredients to make us a delicious stir fry with Tempe, Tofu as well as finely chopped veggies, sounds yummy and healthy too.

Liberation From All Brutal Bullies.

Cyclops, 1947.

William Baziotes.

http://en.zioteswikipedia.org/wiki/William_Baziotes

 

On Tuesday, watching the disturbing BBC TV Panorama documentary about people with learning difficulties being badly mistreated by the staff at Winterbourne View residential hospital in Bristol, was truly horrible.

http://www.independent.co.uk/news/uk/home-news/care-home-fears-raised-months-ago-2292121.html

The sight of the mindless bullying and violence that was inflicted on the vulnerable people at this hospital was dreadful, for once I hoped all of the staff would be arrested and imprisoned.

Not just the staff carrying out the attacks, but also the other staff, who saw it and did nothing, as well as management and the regulators.

The next day four staff members who carried out the attacks were arrested; they were immediately released on bail and are sure to get prison sentences.

No news about the rest of the staff or management or the regulators, the hospital hadn't  any activities for the vulnerable people, nothing to stimulate them; there was no structure, no daily routine.

Bored staff were picking on the vulnerable people in their care, there were 24 patients and 50 staff; it cost 3,400 pounds per week to keep someone there.

What worried me even more was reading about the torture and murder of a child of 13 by the Syrian army, Hamza Ali al-Khateeb  was tortured to death by Syrian security forces.

'' He is one, of the youngest known victims of Syria's ruthless crackdown on peaceful protesters who have tried to overthrow the government of President Bashar al-Assad.’’

In the Independent they wrote:

‘’ Hamza was among a group of people detained at the end of April when they participated in a demonstration in the town of Jiza. His family heard nothing about his whereabouts until last week, when officials reportedly arrived at their home and told them they could have Hamza's body back if they agreed not to publicise his death. 

They consented, but were so horrified by the condition of the child's body when it was returned to them that they made contact with a human rights activist, who videoed the body and uploaded the footage on to YouTube.

The film, which has now been seen by thousands of people, shows Hamza's bloated and mutilated body in unflinching detail. 

As the camera pans over his corpse it reveals gunshot wounds, burns and a number of bruises inflicted by the young boy's torturers – presumably belonging to a branch of Syria's feared intelligence services. His penis has been severed.’’

http://www.independent.co.uk/news/world/middle-east/the-face-of-the-syrian-uprising-2291522.html

I hope the Syrian people will be freed of the tyrant Bashir al-Assad and his corrupted government and brutal armed forces very soon.

The two situations, Syria and the hospital are miles apart, but what worries me is how easily things can be escalated.

In both situations brutal bullies terrorise helpless vulnerable people, the patients too could have also been mutilated and killed.

Both need liberation from brutal bullies.

A Good Appointment.

 
Ho Baron.
http://en.wikipedia.org/wiki/Ho_Baron

This afternoon Ruud from Summit came by and adjusted the adapted seat so that I can sit even better.

Ruud took abit off on the right side between armpit and breast, as well as reduced the lower back

Immediately I sat better, without any pressure on the right and more upright, reducing the lower back of the adapted seat meant that I am finally sitting well.

That is wonderful; sitting is really good now, but not when it constantly felt like I was sitting in a deck chair, felt like I was sitting on my lower back.

Sitting upright gives me much better posture, I do not feel as crunched up as I had been, also means my neck is not scrunched up either.

All in all it was a very productive appointment with Ruud, who is one of the good people working to make their hand6ica7pped client’s lives better.

Nice to have someone like Ruud come by, much better someone like him, who is good at their work, very supportive and actually seems to care.

He sees instantly what the problem is and corrects it, this afternoon he suggested that I ask Annelies, my advisor from Areade to make an appointment

Ruud feels that in order to have me sitting optimally, that I will need a new adapted seat made for me, I got this one in 2009 so a new one three years later is a good idea.

  

Tuesday At The Market.

 
John Banting.
http://en.wikipedia.org/wiki/John_Banting

We were supposed to get visitors this afternoon but they did not come by which was a shame.

I hope to see them soon, glad I phoned to see if they were coming, once we knew they were not coming we went out.

Today was very changeable weather, sunny then clouds would come over and cover the sunshine.

Luckily the clouds came and went, we went out, and I wore my fleece top, big scarf and hat and gloves so I was fine.

The brisk wind was actually pleasant especially as I was well wrapped up; the market was good, nice to see the activity.

I love being at the market, it is lovely to see so many people and to look at all the stalls, we bought a couple of things from the Greek stall.

Taramasalata and small stuffed peppers as well as a packet of flat round bread, we will get some more tasty treats on Saturday.

I am already looking forward to going to the market again on Saturday; hope the weather will be good then.

Just watching the TV now, a disturbing Panorama documentary about people with learning difficulties being badly mistreated by the staff who I hope will all be arrested and imprisoned.

                                                      

Exciting Games.

The Glasgow Boys.
http://en.wikipedia.org/wiki/Glasgow_School

Today is beautiful, lovely to wake up to blue skies, sunshine, shame it was so cool, rainy while our friend Nur was here.

Last night we watched two playoffs, one between Peterborough v Huddersfield for a place in the Championship.

The other was Stevenage v Torquay, playing for a place in League One, both teams wanted to win.

Both games were good, the footballers played with passion as well as commitment, as if they were playing in the final of the Champions League.

Two exciting games, which were great to watch, Peterborough beat Huddersfield and moved up to the Championship  Stevenage won against Torquay, for a League One place.

This afternoon was the playoff between Reading v Swansea, another good game, Swansea won, they will be in the Premier League again, for the first time in 28 years.

Very exciting for Swansea, this will give a big boost to the people as well as the economy of the city and the area.

When Blackpool got into the Premier League last year it earned the local economy over 40 million pounds.

This would be so good for Swansea, they could do with the money, visitors to the city will be good for local economy.

Hopefully Swansea will play entertaining football which should make the next football season starting in August very exciting.

Staying In Touch With Friends

Abdul Hasi Al Gazzar
http://en.wikipedia.org/wiki/Abdel_Hadi_Al_Gazzar
 

We watched the final of the Champion’s League between Manchester United v Barcelona at Wembely, it was a good game.

Manchester United were totally outplayed by Barcelona, they were clearly the much better side.

Barcelona had total control of the ball from the start of the second half, so Manchester United had no chance of scoring more than the goal they got in the first half.

Barcelona went onto score another two goals, which made it clear that they had conclusively won.

After the game Alec Ferguson showed what a fine fellow he is, as despite being totally shattered by losing he went straight over and congratulated the Barcelona manager.

Sadly Nur has gone, it was an incredibly short visit, it was really good to see him again, who knows he may even find a job here.

He has promised to visit us again soon; I hope he does as it is always good to spend time with him.

We met 11 years ago, when we both worked for an internet provider called Euronet, there was a great bunch of people there.

I am still in touch with 5 of them, all via Face Book, and three also via e-mail, which is very nice all these years later, I do like to stay in touch with friends.   

Saturday, 28, May, 20011. A Pleasant Visit.

Dolfi Troost

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

It is great seeing our friend Nur again even if it is only from Friday late until tomorrow, Sunday, early afternoon.

Very good to talk with him and enjoy his company, he is working in Portugal right now, it sounds like a nice place for him to live.

Good weather, also food as well as friendly people all of which sounds better than where he was in England.

Especially the weather, I like the sound of a temperate climate all year round that sounds like my sort of country.

Apparently the lowest temperature is 8 degrees in January/February and never hotter than 28 degrees in august.

This sounds gorgeous to me, no wonder so many English people moved there to enjoy the mild climate.

Last night we were up too late talking to Nur, also listening to the bands on Later with Jools on BBC TV.

Today we have all been feeling tired, I can hardly tell the difference between feeling tired because of a late night or my MS.

Feeling constantly tired means that late nights feel no different, I am always tired, we all felt even more tired as the weather has become cold and wet since Thursday.  

Being Positive About My Life

 
Marcel Janco.
http://en.wikipedia.org/wiki/Marcel_Janco

I do my best to stay cheerful, be positive about my life, I like life and seeing people, being involved.

Last thing at night; before I sleep and first thing in the morning, when I am just awake I have scary thoughts.

Where I contemplate what will happen next, as I am once again conscious of all my pain, discomfort as well as all my limitations.

These are very unsettling moments, but once the day starts I am fine, it’s the nights and early mornings when these thoughts come.

When I lie here in bed, extremely scared at what the future holds for me, then my life seems pretty unpleasant.

I am in lots of pain which I have almost become accustomed to now, what I find even worse is that my arms are so much weaker now.

Really hate that happening, not walking or being able to move is horrible enough, but feeling my arms getting weaker is even harder to cope with.

I have learned to accept my limitations over the last five years; recently my arms have become too weak for me to feed myself.

Even that I am learning to accept as long as I still have enough arm/hand function to steer my wheelchair.

Also hold my beaker, and most important of all keep typing and putting my arms around my darling Richie.

A Quiet Day.

Paul Paun.
http://en.wikipedia.org/wiki/Paul_P%C4%83un

A quiet day today, just my physiotherapy appointment with Mathilde afterwards a late lunch, then Richie went to the shops.

He returned with a couple of bags of potting soil so he could put the rest of the plants he bought yesterday into pots.

I thoroughly enjoyed watching him doing this; it was lovely seeing the windows and the gallery by the front door as well as the balcony being transformed.

We now have many window boxes and pots full of herbs, strawberry plants as well as heaps of pretty flowering plants.

A very enjoyable afternoon today, shame the weather has become cooler and rainy, probably good it’s raining as I has been a dry spring.

Tomorrow is my appointment with Ruud from Summit to make a few adjustments so sitting will be better in the wheelchair.

Around midnight Nur, a good friend will come to stay until Sunday; he stayed with us last year while he looked for work.

Sadly he did not find a job here, he got one in England, shame as it would have been good to have Nur here in Amsterdam.

It will be nice to see Nur tomorrow night, even if it’s only until Sunday afternoon.

The Freedom To Determine How They Live Their Lives.

Janos Mattis Teutsch.
http://en.wikipedia.org/wiki/J%C3%A1nos_Mattis-Teutsch

Today has been a pleasant day; I received an e-mail from Ruud from Summit asking me to phone him.

Which I did, we have an appointment on Friday so Ruud can make sitting more comfortable for me.

After Richie gave me a shower, dressed me, my lovely friend Anja came to visit, it

was lovely spending time with her.

Good to see a good friend, talking with her was great, we talked for hours, just what I needed right now.

First dinner, then a small glass of good Trinidad Vat 19 rum, to toast my success in getting the building free of pigeons.

Richie went to the garden centre for plants, he has already planted some, there is a big planter full of strawberry plants outside the bedroom window, some pretty flowers will follow.

Back in bed I watched the Dutch news; saw shocking pictures of people being fired on in peaceful demonstrations in Yemen and Syria by their armies.

I heard two men talking about the Hama massacre in 1982, Human Rights organisations think as many as 40,000 were brutally murdered.

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

The two escaped with their lives, one man’s mother died after being tortured by the Syrian army, they can never return as they were officially declared dead.

Very upsetting hearing this, despite many been killed, thousands of brave people were back out on the street demonstrating peacefully.   

I hope they succeed in getting rid of these tyrants and get the freedom they deserve to determine how they live their lives.

Success After Many E-Mails.

Henri Rousseau.
http://en.wikipedia.org/wiki/Henri_Rousseau

I was pleased that I managed to get most of the way to and from the market on my own.

The sun was lovely, especially out of the wind, the Ten Cate market is good to visit, Tuesday has always been one of my favourites.

It was good to be there this afternoon, nice to be greeted by market stall holders we know and to buy tasty treats from the Greek stall.

Yesterday I got the new lighter joystick which is easier to use, the handle is not as easy to hold as the one I had.

Hopefully I can get another more suitable handle soon, as well as get the wheelchair table support bracket strengthened, the people from Welzorg, did try to tighten the screws.

Today the table was sagging again, so will have to contact my case manager, yet more telephone calls and e-mails.

Finally all my e-mails to our landlords paid off, they have now put the anti pigeon strips up in all the guttering and above the kitchen windows, front doors and lift doors.

It has only taken me years of telephone calls, numerous e-mails to get the entire building pigeon proof; I started asking for this in 2007.

They promised this in the spring of 2008, they only did the ground floor, after more e-mails they did the first floor in 2009, the rest was done in 2010.

They did not do the front of the building, from first to fourth floor until today; it has been quite a struggle to achieve.

Yippee, brilliant that it has been done now, just before we were going to buy the anti pigeon strips tomorrow.  

                                    

A Place To Communicate Openly.

The Repast Of The Lion, 1907.
Henri Rousseau.
http://nl.wikipedia.org/wiki/Henri_Rousseau
 

I read a friend’s blog today; she talked about giving a standard response when people ask her how she is.

Something, I recognise very well, especially when I had to stay in bed 24/7 in august 2008 because of a large pressure sore.

I could not cope with talking about how I was doing, I was simply too scared by the way my disease was progressing.

Frightened by how quickly I had developed such a nasty wound, which no one knew how long it would take to heal.

I often said I am ok when I was not, just did not want to get into every detail of how I was doing.

Sometimes I just wanted to get away from the whole situation, not constantly talk about my MS or how I felt.

It has taken away so much that I did not want it to take everything and dominate every aspect of my life, but of course it does.

I did learn after a few months in bed that constantly saying I am ok was pushing people away.

This got me thinking, I realised that for all sorts of reasons I needed to be open.

In early February 2009 I started to post everyday, this helped me to talk about what my life was like.

It gave me a place to communicate, allowed me to meet, make friends, give and get support, be part of the world.