Feeling positive despite limitations.

 

Roberto Matta

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

Two appointments I was dreading one yesterday and one today went very well which was a tremendous relief for Richie and I.

The appointment yesterday was with my case manager as well as my advisor, they both work for the councils mobility Department.

They are both very good women, who have to work within tight parameters nevertheless they do as much as they can for me who is admirable.

2 other people were also present and they were Percy from Welzorg and Ruud from a company called Summit, they make the custom-built wheelchair backrest.

We were both not looking forward to this meeting however as soon as Jacqueline my case manager arrived the appointment started positively.

She suggested we make a list of all the things we did not like about the wheelchair, and there were many points all of which were noted.

By the time everybody was here the list was completed, at first the four of them turned their attention on the wheelchair examining it thoroughly.

Finally Percy said that there was nothing that his company Welzorg can do to improve the wheelchair finally there were no more prevarications.

Right away Jacqueline decided that the only cause of action now was that I needed a new wheelchair.

This means a new supplier so I do not have to deal with Welzorg anymore about my wheelchair which was fantastic news this cheered me up tremendously.

On the 30^th of January I have an appointment at 1400 with Annelies my advisor and somebody from the new wheelchair supplier Beenhakker to discuss the new chair.

In the meantime Ruud from Summit will temporarily adjust the backrest on the wheelchair, as soon as it known which wheelchair I will get he will make a custom built backrest for the new wheelchair.

Richie and I are very pleased with how things went yesterday this really is progress and this time we will make sure the new wheelchair is a good one.

At 1200 today I have an appointment with the doctor from the rehabilitation clinic as well as Milou the wound nurse.

This was the appointment I was dreading the most as I knew that Janneke the Dr was going to cut some hard skin off around the edges of the wound.

In order to stop myself lying awake all night thinking about it I took a sleeping tablet which worked very well.

The procedure seemed to take forever luckily I don't feel a thing nevertheless I was relieved when it was all over as it's not my favourite activity.

Janneke was very positive about the wound saying it was looking good and nearly healed up which was good news.

Hopefully trimming off the hard edges will help the wound to finally heal; it would be great if that were to happen at the same time as I get my new wheelchair.

Despite my increasing limitations I'm feeling very positive about the future and I'm looking forward to being able to get about again.

First Tuesday with Jools Holland on TV.

Roberto Matta.

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

The first Tuesday without the prospect of good music on Later with Jools Holland was not such a nice one, but I soon took my mind off it by listening to music by Bach.

Listening to Bach’s music is always an uplifting experience for me, I do like the classical composers Beethoven's is one of my big favourites.

I remember years ago when there was a sale at a WH Smith shop in Reading when everything was so cheap that I bought over 40 LPs.

I had a wonderful cross-section from Richard Wagner to Jimmy Witherspoon, Bessie Smith and many other wonderful artists.

I also bought a lot of rock 'n' roll, some rockabilly and punk music so great range of music which is what I enjoy listening.

In the afternoon I had an appointment Peter from the rehabilitation clinic, he was here to discuss the wrist supports which allow me keep using the Motomed.

As well as the exercises which I do in bed utilising the handle that dangles over the bed which I can no longer use to pull myself up with.

I now have two new handles to use in bed which will be easier for my hands to hold onto, a good appointment which was very useful for Richie and myself.

Creative thinking for a solution.

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

Last night I had a very unsettled night and kept waking up many times during the night worrying about the appointment with Milou, the wound nurse today.

Milou was here precisely at 1200 just as we had arranged, she said that the wound looked good but that the surrounding area was damp.

We have no idea what the cause is, Milou could only tell us that she could see that it started to happen mid-September, without the reason being apparent.

Richie has come up with a variety of ideas which he is going to try out and see if any of them provide a solution to the problem of the dampness around the wound.

One of the ideas is to use the extra supports that we have for my torso and place one during the day below my right knee in order to lift my right buttock from the bed.

The idea is to do this during the night so as to alleviate the pressure on the area where the pressure wound is located.

Richie is hoping to be able to come up with a resolution to this problem without having to turn me on to my side during the night, which causes painful shoulders and arms which trigger off spasms.

We are hoping that by trying different ideas we will be able to come up with a solution to the problem of the dampness around the wound.

Once the solution has been found hopefully the wound will be able finally to heal up so that once again I might be able to sit in my wheelchair.

A Different Complexion

 

Roberto Matta.

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

It's only 18.15 right now, yet it feels like it was already 02.15 and before Richie closed the curtains it looked like it too.

This afternoon at 14.15 I had an appointment with Peter, the engineer from the rehabilitation clinic, to try the new wrist supports with a hook on each which he made for me.

This allows me to keep using the arm exerciser on the Motomed, which is very good as it stretches my arm muscles, which is essential for my well-being.

Peter is a very good engineer, so I am looking forward to trying out the new wrist supports in a while when I do my exercises when Richie gets me out of bed.

Right now Richie is about to take the dogs for a run around the Rembrandt Park where I'm sure they will have fun chasing rabbits back to their burrows.

Just now I realised that as its Tuesday there will be another edition of Later with Jools Holland on BBC2 at 2300 tonight.

That is very exciting and it has put a totally different complexion on the day knowing that I will be listening to some good news before too long.

Only three hours to wait, that is not long but to me being very impatient it seems like forever.

My father used to tell me a little rhyme which went something like this, patience is a virtue, virtue is a grace and Grace is a little girl who did not wash her face.

In Germany they have a saying which goes something like this, patience is a virtue and that is a nice virtue but that we are better off without it.

I like both of these sayings although the one my dad told me used to worry me slightly as a little kid until I understood then it made me laugh a lot.

It still makes me laugh a lot after all these years as do many other colourful stories that my father told me, he was a great storyteller who I miss hearing his stories.

A Pleasant Start To The Week.

 

Roberta Matta.

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

Today Richie and I did the exercises early enough for him to take me to the bathroom to be showered and dressed as well as perfumed.

All this was done before Miranda; the wound nurse from the rehabilitation clinic came to check on the wound.

We were in fact ready just before 1200 which she is due to be here, as it was we had to wait until 1215 before Miranda arrived.

It was really good to be showered and dressed waiting for the wound nurse to arrive rather than to be got out of bed just before or just as she arrives.

Being ready made me feel much better, 1215 when Miranda arrived I was ready for her to inspect the wound which she did immediately.

She removed some tissue that she thought was probably stopping the progress of the healing, after which a photo was taken and Miranda left after 10 minutes.

After which Richie has put me back into bed, then they went into the kitchen and made us a delicious lunch, vegetarian sausages, chips and cauliflower cheese.

The plan is to eat some delicious pumpkin soup this evening with garlicky croutons and fresh fruit.

I am enjoying the day immensely, Richie is too so I think we will try and replicate an early start every day, I'm sure that will improve the days for us.

It’s brilliant that we have had our lunch, and I written my blog post for today before Mathilde, my physiotherapist gets here for our Monday appointment.

Nice to be ready so early it has put a different complexion on the day and I must say that it's one that I like very much, nice to feel on top of things.

What a pleasant way to start the week, much better than rushing to keep up, this way we both feel relaxed, positive and better able to cope.

What a relief.

 

Roberto Matta

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

It has been quite exhausting having two people working all day for two days in the apartment to install the air conditioning unit.

The dogs seem to think that they were here solely to play with them, so they had to be kept away from them if the installation was to go well.

When we were in the shower, Richie put the dogs in the spare bedroom so that Andre and Robert could carry on working without interruption by dogs.

Luckily the installation went well which was a relief, tomorrow Andre will be back to do the final touches, after which the installation is complete.

Because of all the activity of the last couple of days, we totally forgot that Miranda, the wound nurse from the rehabilitation clinic would be here 12.30.

She will be coming in place of Milou, who is on holiday right now in Nicaragua, Costa Rica and Panama, where she is hopefully enjoying herself.

Miranda seemed a very pleasant person as well as a competent nurse, she will be back to see me again in two weeks time.

She was pleased with the progress the wound is making, which makes me feel hopeful that I will be sitting again, something that I was losing my belief in.

After she had gone, Richie and I talked about Cyril's sudden problems with walking, there seems to be something wrong with his right shoulder.

We immediately called the vet and made an appointment for this afternoon at 15.00 for Richie to take him for examination.

They had only just gone when Mathilde, my physiotherapist arrived for our appointment, she was upset to hear about Cyril's walking problems.

Just before she was about to leave Richie arrived back Cyril and he could immediately reassure us that there was nothing seriously wrong with him.

According to the vet it was just a sprained shoulder which should ease off after a couple of days, she did prescribe painkillers.

As well as advised Richie to keep Cyril on the lead for a few days when out in the park, in order to avoid any more strains on the shoulder muscles.

It was a relief to hear the vet prognosis, we were all very happy to know that Cyril should be all right in a few days time.

Richie has taken our three dogs for a walk in the Vondelpark, which I hope will be enjoyable for them; I'm looking forward to hearing all about it on return.

My plan for this evening is to take it very easy; after I've found a painting by Roberto Matta I shall place this on my blog and enjoy the evening with Richie.

Great News.

Roberto Matta.

Jazz band, 1973.

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

This morning Milou came to see us, check on the progress of my wound, she told us that it was looking even better than last time, two weeks ago.

She will be back to see me on 3 October, before she comes back she will discuss with Dr. Stolwijk, if there is anything else she can do speed up the healing process.

It's been quiet and empty since our lovely visitors, Gareth and Paul left on Monday, but it seems that won't be for long.

As we had great news yesterday from Aud, Richie's sister that she will be coming to see us on 26th of September and she'll be staying until 6th of October.

That is such brilliant news, I'm looking forward tremendously to seeing her, I'm hoping next week the weather will be better than this week.

It will be lovely to have Aud here with us, especially for 11 days, I'm very excited to be seeing her again.

I know the dogs will be happy to see her especially Cyril who seemed to fall in love with her when she visited us last November.

It's great that we're getting another visitor so soon, that is excellent and just what we need right now.

Getting Aud's e-mail yesterday with the dates of her visit is really such good news; I'm feeling extremely positive about life now.

Optimistic Anticipation.

 

Roberto Matta

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

  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No Compensation For Going Outside

Guillermo Kutica

http://en.wikipedia.org/wiki/Guillermo_Kuitca
http://painters-table.com/link/literal/guillermo-kuitca-painting-resistance-movement

It's Wednesday today, and we had an appointment with Milou, the specialist wound nurse from the Rehabilitation Clinic.

We thought we had plenty time before she got here and Richie was just about to start cutting my hair when the Bell rang and our expected visitor had arrived early.

The dogs gave her a rousing welcome which she likes because she's a doggy person, then Milou could concentrate on the reason for her visit.

These visits are not my favourite but they have to happen, apparently there was progress, the wound has got smaller.

Milou advised us to use another dressing from today, she brought some with her, it is called Aquaseal, it turns out that we still have quite a lot from 2010.

I was happy to notice that Richie was putting less into the wound so that confirms for me that it is indeed getting smaller.

How I wish this was happening at the beginning of June then I might stand a chance of it healing totally before August.

Who knows what can happen, the first time this happened it took a long time but then it was suddenly healed up.

I'm holding out for a pleasant surprise if not for Angela’s visit in August then maybe at the end of the month.

Right now I don't care when as long as it happens so that my world can be expanded again.

Being in one room no matter how lovely is no compensation for not being able to go out and see the city I live in.

Even though I make the best of it by being optimistic and enjoying everything I can around me, none of this compensates me for being stuck in bed.

No wonder that I started eating too many tamarind sweets and Bombay mix, I was shocked in May when Jaya took photos during her visit.

As soon as I saw how fat I had become, my decision was made, to immediately stop snacking, which I did and now I've lost all that weight.

I'm really happy about that as I don't think it's a good idea to put on lots of weight being so handicapped.

No sweets or Bombay mix since May has been great, since then I've been eating small portions of soft fruit which is much nicer than processed foods.

First I will edit this piece, find artwork, post after which I'm going to relax and enjoy the rest of the afternoon and evening with Richie.

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.

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.

It Really Is Here And Now For Me.

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

Yesterday I said I would put this whole situation with the support cushions out of my head until next week.

I wish I could, but I can’t because I can no longer sit with the improvised support structure Richie has constructed around me.

This has worked very well but this last week it has become impossible, for me to sit upright for more than a few minutes.

Richie has adjusted me many times already but within a minute I am hanging to the left, this hurts me alot, it particularly hurts my neck.

That is because it feels like my neck has to stop me totally collapsing to the left; this puts a terrible strain on my right side.

Difficult to put it out of my mind when not having the support cushions has now become a big problem for me.

Doing anything while hanging to the left becomes pretty impossible typing is easier than eating or drinking.

It has been suggested that I contact the local newspapers or TV, sadly I  don’t think the local paper or TV would be interested.

They were not interested when we were waiting for so long for a new accessible apartment, and I was stuck indoors on the second floor without a lift.

I was only able to go out if I was carried by a couple of people from the mobility bus, twice a week I spent a few hours at the rehabilitation clinic.

From June 2006 until we moved in May 2007 I was spending most of my time indoors, by the time we got a place with a lift I could not go out alone anymore.

Waiting has become a central theme of my life, I have to wait for everything and I do not have the time, not with a progressive disease.

It really is here and now for me.

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.