In great regret I have to announce my big buddy, for several years my big support, Wim Tusveld suddenly passed away.
May 2016, Spring
Spring is in the air, finally! Weekly with Yoram I walk a circle in front of the house :)
Scary, because my left leg feels like elastic band and shakes every direction I lean. Even Yoram keeps on shouting everything goes right!
But I make it, every week even better.
Quiet spicy I think, first downhill, a straight piece and uphill again.
After that I may puff out shortly and after a few seconds I have to lift my legs. That’s horrible for me because my lame left leg has almost no muscle power so my leg feels heavy...It is getting better but so slowly....
As last we dance a little...
We balance ourselves while we make paces to the left and right. Today I was a bit too enthusiastic and leaned too much on my left side, so I misbalanced and I fell.....
Nowadays that does not scare me anymore, because I have learned to fall like a bag of potatoes. But Yoram frightened!
March 2016. Article
An article was published in the "Linda" about Locked In Syndrom.
See link for whole article (in Dutch)
July 2015, Walking
A few weeks ago my left leg (yes, she has a mind of her own) that I sat in my wheelchair long enough and decided to go tense.
Now is going tense very painful and to combat that is to stand up or walk my regular walking had stopped because I stopped revalidating in the local hospital.
At home I only walked short distances, but that was not enough.....
So I decided that I had to walk more with my walker!
Every day I walk 500 meters in small sections (10 meters) inside our house. And with the help of loud rock music it will not bore me.
A lot of changes have taken place in my life since January 1st. Nowadays tree afternoons in a week I go to an activity centre 'de Noorderbrug'in HEERENVEEN. This development for me is very nice.
My afternoons are filled with art and I do not computer as much as I used to. I obliged myself to only paint and only express myself totally. This resulted in another exposition in BEETSTERZWAAG.
The final decision has been made: My rehabilitation will stop at April 1st. After almost 14 years! And that really does not mean I am going to sit down and do nothing. Every day I do my exercises to stay supple and in shape.
September 2014, Heavy
Past months were heavy. At the end of September I became ill. A urinary tract inflammation got completely out of control. After a few days when I could not get out of bed by myself anymore we decided to call our family doctor. She startled and together we called an ambulance. They brought me to the local hospital and there I came to the ICU. All the time I did not realize my condition was seriously wrong. Only in a few days I became dehydrated and undernourished. Had lost 10 kilo......
After eleven days being in the hospital I had to go to a rehabilitation centre in Beetsterzwaag. When I was there everything went fast! Within a few weeks I was again strong enough to get in and out of bed by myself again. With the help of power food (Nutritious Food) and grounded food, because I was too weak to chew, I could go home again after 3 weeks. Now I realized that even if though my tumor is completely gone my hospital troubles never will be over, shit I cheered to early.....
May 2014, Garden
A bit scary to be alone again, fortunately everything goes better now. Despite the medication a little seizure appeared. It was a small one; still...It affects your daily routine. And the knowledge that suddenly you can go to a hospital is weird. And then I realized how much I had ´saved´ for ´later´, whilst maybe I will not be then there anymore, so I cleaned out my draws.
The garden season started again! The former owner of our garden was a big fan of MIEN RUYS, what I realized when I visited her garden in Dedemsvaart.
Ever since we live here we made the whole garden wheelchair-friendly=Marjan-friendly and even a wheelchair-friendly vegetable garden!
April 2014, Oops
The past few years I had several small attacks after my several brain surgeries. They were scary but I could live with them. Nowadays I got more afraid of those attacks, because they became heavier, and I got scared of staying in one. And last Thursday that happened.
I felt I got another attack and woke up in the hospital.
There the attacks were diagnosed being caused by scar tissue or that my tumor could be growing back.
It is being treated with KEPPRA. In 3 weeks time an MRI-scan will be made...
Since a few weeks I added a few more mirror exercises with an extra 1 kilo to the ones I do every day. And I do those extra exercises for a few weeks now and I noticed that I could do more than last year. Like taking a little hill uphill in my wheelchair. I could not do that last year.
Yesterday I was walking on the walking machine, what I do every two weeks and during my walk I noticed my left hand was giving more grip. This only happens when I stand up.
During my walk my complete left side felt more forceful.
Everything has to change
These days no shocking things happen. On TV I saw a program about 2 handicapped women. They both could speak.
When I see that I am so happy that I can wash and cloth myself again.
The only time I am helpless is when I fall out of my wheels, almost never anymore....
After a few weeks being fed up with everyone and everything it suddenly came to me. Want to be independent again and fed up with needing help. I want to stop that every week is the same.
So no more therapy in the local rehabilitation center and no more help around the house twice a week! Everything has to change!
Every day I practice at my home, so now I get enough movement.
Now Thursday I go to the rehab.
December 2013, Update
Already, its December again and a few weeks more, this year will be over. The trips we had these last weeks have been great, even ´talked ‘with other people with the help of my I-pad!
Notice that ´talking’ with the I.pad is far more faster and easier.
On the screen there far more space to right down my whole story while the last few years I had to narrow everything I wanted to say into one-liners or even one-words. As I am used to talk about everything very wide, I was very limited the last few years. Because saying why you like something very much in one word, I still think that´s very hard and I do not want to say ‘because´, that’s annoying.
Now developments are going well. Twice a week, when I exercise in the revalidation center in the local hospital The Tjongerschans in HEERENVEEN´(LOGOPEDICS and FYSIOTHERAPY ),in the ´bridge’ I keep on walking 10 passes freely for the simple reason ,´the bridge’ is no longer in length. And to ask the rehab doc. Erik Lammers to it be made a bit longer for only me.....
Preferably down the complete hallway in the rehab.
November 2013, De
Oops, already it's November. It seems time flies faster as we are getting older.... This week we have a lot of outings. I enjoy those very much, because a lot happens around me. When more people start to talk at the same time I can stop talking, because my voice is not loud enough. Also I have not enough loudness in my talking machine. And only a few people take time and effort to talk with me. It is not nice but I am getting used to it. In the meantime now I´m the spectator.
Yesterday together with Jetze (my husband) we went to a premiere of a new Frisian TV series ´de keet´. People can watch it at ómrop Fryslan. It´s about a member of a group of friends, who falls of a roof by accident and breaks his neck. The accident enables him totally, he then is LOCKED IN, the sequel is about accepting suddenly being LOCKED IN.
At the premiere another LIS (person with LOCKED IN SYNDROME)
Allard and he also cannot speak. I am half LIS and at such times I am fed up being LIS.
September 2013, Update
Just went to revalidation doctor, Erik Lammers, and because I am visiting him every six months, he is able to see if my situation keeps on getting better.
This, of course, is the case, also with the help of my previous operations. (corner of the mouth lift, glands....) My articulation so I speak much better!
Together speaking goes well, but with a lot of people in the room my vocal strength is not strong enough, so I write down, what I would like to say.
Besides I am spectator. Those outings are my favorite!
Nowadays I do my every day training, 250 m walk with a rotator, half hour biking and mirror exercising with my paralyzed left arm, I am noticing that I almost never feel ill and little wounds heal quick. Good motivation for everybody to exercise for an hour and a half every day.
July 2013, Holidays
For a long while the holiday seasons I found very annoying. Only I experienced it as a pause in my weekly movement and then I felt freezing.
Fortunately I don´t feel that way anymore.
Because now every day I walk with my walker and eifel.
Ever since I do that my blood circulation is far more better and I feel warm again. Also doing my mirror exercises helps a lot.
June 2013, Glasses
Again I have another milestone .The big lens, which I used because I am very shortsighted has been moved to our attic.
A few weeks ago a lady from LOW VISION visited me at home and has in all peace fitted me a pair of new glasses. She did this the old-fashioned way, very calmly!
Now I have some new reading glasses so I am able to read magazines, newspapers and even started to read a book. Haven’t done that for years.
May 2013, Garden
Every day I practice walking with ´the eifel´, a cane wich looks like the Eiffeltower.
Fortunately Jetze (my hub) walks alongside me as my safety net and catches me when I fall like I am like a feather... My balance gets better every day.
Happily I can go outside again, in my wheelchair.
Maintenance I try to do myself, the last five years we tried to make our garden Marjan-proof.
And almost everywhere is reachable for me in my wheelchair. Only some places further as 1 meter I get the help from my mother, Nieske and my regular help, Cobie.
To think that it is only a few years ago I could only sit and watch...
At the end of this month there will be a congregation of our Locked-in Syndrome Union.
At Friday 31 may, at hall Verploegen, Woeziksestraat 100, 6604 CM,WIJCHEN.
My paintings become something by themselves.
In a store or at the market I usually find a fabric I like. By watching and observing the fabric I decide what colors and shapes I will use. Jetze, my husband finds it always a surprise, I put shapes and colors just anywhere, it seems. For weeks the painting ´grows´ on my desk and as soon I start to add the fabric, the painting starts to look at something. And afterwards I make up the name
April 2013 Walking alone
Today I walked 5 steps without anything, no cane no walker no nothing. I notice my balance improves by walking with a cane every day.
Another milestone and a big duh to all the people who told that improving my situation after two years really was impossible and it is twelve years later!
March 2013, Eifel
I am practicing with a cane with four legs, an Eifel like the Eifel tower.
Even when I walk very short I totally am exhausted. I notice a small change on my left leg
Like it becomes longer, I stand up far straighter.
Now almost every day together with Jetze I walk a piece, he catches me when I seem to fall or pushes me back into balance.
Now I can notice my balance gets better by the day.
Sometimes it feels like I ´walk normally´.
Funny, eleven years ago medical doctors said to me that it was impossible to change my condition after two years and what am I doing now? I am very happy that I have never listened to those people.
January 2013, cured
After two more antibiotic treatments my wound seems to be cured. I wish everybody a very happy and healthy new year. During these holidays I had not had any therapy since eleven years. This was only possible because now I every day, walk 150 meters, ride my electrical home trainer for 30 minutes and stand-up for 30 minutes. By doing this every day I keep my blood flow in constant movement. My body feels good, I keep warm and my body became stronger.
December 2012, Tough
Unfortunately I fell of my purple cloud. The wound I got with my face operation last October was not healing properly.
After a while I went to the hospital again, unfortunately my own surgeon was not there...
There they noted that I was right in time, because my wound was starting to get infected. Everything was being removed, my face was swollen with puss etc Yuk... and was cleaned with salty water. The next time (twice a day) I could do that at home with help. Now my help at home is my hobby Jetze, a hero on socks. But in the past he even changed my PEG, so I thought that would be no problem, he can do anything as long it has no eyes...
Unfortunately he did not understand how to clean up my wound; he was so scared that he would hurt me. Fortunately we could get help from Cobie, our saving angel!
She cleaned up everything and showed Jetze what to do next time.
Now I am waiting till it´s getting better, taking antibiotics and next Monday I can go to my own surgeon again.Still I keep on smiling...
November 2012, The
Already I can say that I am happy I did the reconstruction of my face. Everything is much better and I am able to smile again. Especially people react to me again is nice again. For years I had the feeling to be invisible. Every day now I read up loud to practice my voice. I was quiet for many years because only a few people were able to understand me.
Next Wednesday, the 17th of October again I will be operated.
The goal is that I will be able to smile, my lower lip will be able to build up some pressure, maybe I can articulate better, so speak more understandable, less to no more drooling. And all that by one operation! GO FOR IT!
Made a decision! My face will be fixed by an operation after I did facial exercises for 6 months intensively, without any result.
So I cannot do everything by myself but am helped by dr. de Visscher in the MC in Leeuwarden.
He is getting a piece of a muscle out of my upper leg, sews it under my mouth and brings it under my skin to the top of my head. With this muscle he can pull up the right corner of my mouth, by pulling to it. It sounds scary but it does not grow in place by itself.
Amazing how easy I set aside my principles. But the doctors only touch the outside of my head; do not go deep inside my head. A narcosis is the only possibility,
Goodbye never wanting to be operated again, never wanting to get a narcosis again. JUMP!
June 2012, Mirror
For a few years now I do exercises with my left non-functional arm. These exercises I became from my ERGONOMICStherapist SYLVIA.
It is called mirror therapies. It is developed by V.S.Ramachandran in 1996.
The exercises I do with my good functioning right arm in front of a mirror and look at it. My brains then think I make the moves with my left arm and it makes the blood flow in my left arm, that feels great!
Also great is my left shoulder became stronger while I did the exercises with my right arm and my brain thought I was doing it with my left arm.
Every day I do these exercises and it feels very nice when your blood starts flowing again.
Nowadays I have less therapy in the hospital, to do more fun things. So we shop till we drop, in search of gadgets. Nobody has to think I quit, because I keep on exercising at home every day. And I now know that I have to keep on doing that to stay pain free and flexible. I like having less therapy, but now I talk less.
Check out my creative
There are some new ones
April 2012, Spring weather
Now the weather is nice I keep on being in my garden. Last week I noticed I can do far more then I used to. Like sweeping the pavement, for a long time I had not enough strength but now I can do it. And Monday I walked together with my therapist, Sylvia in the garden, I just sat down on a bench without any armrests. I stood up without any help. You must know that in the hospital at the REHAB is a special chair with armrest armrests put in the waiting room for me and I always chase people off it with the, now false, excuse that I need armpits to stand up....
2012, 2 updates
Like always time flies. Quiet logical when you are having a training program like me.
I keep on doing this because I know out of my own experience that not exercising means cold limbs and that is not pleasurable.
This means that I have to exercise until the end of my existing days is not very bad, because to have warm limbs is very nice.
the meantime I know my so called side effects are being caused by damage in
my brain which is caused by meningitis. So those weird attacks I still have
but they are not very heavy, only the medication I had made those attacks
heavier. It seems I have to live with it.
January 2012, Happy new year
Everything goes OK, now I have invented a new route in our house, so I am able to walk a long way at the time. With all kind of different directions and when I walk it 15 times, I have walked for 500 meters.
My left leg is getting stronger ever since I do this. Still going stronger, even now after so many years.....
With my hormones I always was very early, even now it is the case, I am Meno-pausing...
Really irregular periods and excessive transpiration! And I actually think I am the only woman who really likes that. Finally warm, at last! I love it!
Of course my emotions. There only has to happen just a little sweet thing and I’m sobbing all over the place....
November 2011, Strange
Very funny....I quiet my medication (muscle relaxants) because of the side effects and my left side started very gently to work again. Of course not fluent like my right side but its reacts when I think about it.....
Last Saturday I walked together with the help of Max, my physiotherapist, out of the swimming pool. Most of the time he supports my shoulder with his head but now I already walked up the stairs before he got ready to help me, so I walked upstairs without any help!
So I am doing very well!
September 2011, Shortsighted
Several times meningitis during my coma made me very shortsighted. First I kept denying it because shortsightedness was something for very old people, but now I realize this is never getting better. Its very stupid, I can see everything but as soon it is about the details I cannot see a thing, also with faces, I never recognize someone. Even our children I do not recognize. So everybody has to say Hi very loud and perhaps I recognize your voice or the sound that you make when you walk.
February 2011, SMS
Already we are January and last month I got me a new computer and for awhile now I am installing and try to get everything there where I want it… for the first time ever I myself have duplicated a music CD and I just could do it, feel like a WHIZKID
With my practising goes very well, every Thursday I practise with Mik on a walking machine, because it is impossible to do that with my other Fysio, Monique. Because when I am around nice men I am getting sort of tension in the left side of my body. With that tension I am able to use a grip of my left hand, which appears during that tension And I only have that tension when I am around nice men….Around women I do not have it. I can not lie, because immediately I get this tension when a nice guy is around.
And for the people who have my cell, my cell is only to be used for SMS, and when you are not able to use SMS ask your children to help, they think it is very interesting to help an adult.
October 2010, Oops
Last Thursday I fell again because my wonderful walker, its left arm support gave in when I was leaning on it so I fell with my head against a door post and I was completely of the world.
Yesterday morning I woke up (Friday) and I could not remember anything of what happened last day (Thursday) Now I am dragging myself with a big bump on my head and tree stitches in it too.
I feel just as after my coma, a bit woozy. Got a very sweet card of the team therapists from the rehab where I come for a long time now. They very are in shock when I bounce again.... and my blood is red just like everybody else, even though sometimes they think that I am not human, because I keep on going to rehab and my blood still is not purple, even though I would like that a bit.
August 2010, Bad luck
Now I am getting the feeling my life is a big circus. But I am unstoppable I keep on going...
Have a virus infection in my left good eye and I also bounced. Luckily nothing was broken but a severe painful upper left leg muscle which causes a spasm as soon it is getting painful.
Standing straight up is it most comfortable or sitting in my wheely with my left leg almost
folded double on my right leg, I can almost lay it in my neck....
Furthermore I am covered in bruises, just do not think about it.....
This all has made me very careful until I am healed.
April 2010, Chaos
Life is very chaotic right now. Outside in the garden I transport by wheelchair, that is safe., but inside the house I like to walk around, so I keep on changing from being in or out of my wheelchair, very fatiguing.... Therefore all my helping aids (wheelchair, walker...) are standing in the middle of our home and keep on being put aside in a for me impossible to change it-way. But I still do not walk good enough to walk outside of our home. And I definitely can not kneel down in the garden, so it keeps on being chaotic. I know it will be like this for a short while but still.....Even it still keeps on being very nice for me being right, when I said: I will walk again. And now I do so.....
March 2010, Walking
A huge milestone I notice now, we forgot to practice walking again, I used to do that with Jetze, but now I did it all by myself!
I notice I do things standing up without any help and Jetze is the one who thinks its scary, I myself do not think that anymore. I am very careful.....
January 2010, new goal
It is funny, now I walk more my left foot also starts to do more. So when I stretch my body, I do that every day for half an hour, I used to lean on my right leg and now I noticed I am starting to lean on my left leg more often.
I want to wish everyone a happy new-year intended to walk more with my walker but the weather keeps on making the roads slippery so for now I am still sitting in my wheely....
October 2009, Update
Gradually I start to use the walker more in our house and I use my wheelchair only to do my exercises in the morning every day.
Inside our house I use a chair with wheels, it looks like an office chair.
This only is a problem when I do my things inside and outside our home, because the office chair I can not use outside the house.
With my office chair I can go up and down and that is nice. I rather see eyes than belly's or asses. My birthday is coming up (the 24th) and I now know that I have reached my goal! Now I am able to drink out of a glass again, great!
Every Monday morning a therapist comes into my house to do some exercises with me, walk to back and front, stand in the open without any help etc.
That I regain my strength again my physiotherapist sees it happens from week to week because every time I do the same exercises and they now get more easier.
I just use my walker in the evenings. I only was not able to stand- up out of my chair at night without any help. We solved my problem, we made my seat much higher than it was and now I can get more easier out of my chair.
July 2009, Update
It is very stupid, because I have to teach myself to use the things wich I have relearned again, like the R and sometimes the K is sounding better now. Also I can do something new! Whenever I stood in front of my sink in the shower I had to hold myself with the support of my left arm. Now I am standing there without the need of support. Getting better is going very slooowly but it happens.....
Also my new walker arrived, but me walking alone is to scary my trainers think, but I notice that faulty steps I sometimes can prevent much better now. It is fun to notice that my body still improves every day now.
Whenever I talk now I have to keep my caution with my swallowing and also during my talking I must not forget to swallow and to think during whenever I speak because I used to talk before thinking, I used to be very impulsive but nowadays my answers used to come very late and usually people talk about something different then. For example A person says hi and walks further and when the person is almost a block further I have enough respiration to say hi back to that person.
June 2009, Update
Every day again I notice I am getting stronger and my being betters every day. It is fun noticing that I was right all the time, after a lot of people preaching to me not to bother such hard work. Once a physiotherapist said to me that he would eat his hat if I would ever walk again, well I guess I am going to keep him to that and remind him to it, hihi...,because I remember everything and he was not so sweet every time....
Because my left side is getting stronger now, I notice little moves in my left arm....
There is being custom-made a rotator for me , not a Smurf blue one, but a black high one with scales where I can lay my elbows in and stand up and it is almost 1.80 high, very high after 8 years of sitting....
P.s: Doctors in Rehab are talking about a kind of miracle thing in my head, while I think it is having the right combination of masculine/female hormones.
I am no She-devil, but have sometimes masculine or female behaviour. I now notice that my helping hand Coby is a real female woman, she needs the help of a man, not me. Even my pictures I used to hang myself.
April 2009, Another milestone
Jippieeeeeee, I reached another milestone again!!!!
Again I am able to do something great!
I can make the RRRRRRRRRRRRRRRRRRRnoise!
Not the one you make with your tongue but in your throat ERRRRRRRRRRRRRRRRRRRR.
Great, again I am able to talk FRENCH, not that I do this a lot, but the possibility is there again.
Everything because of the FACEFORMER, a thing I practise for a while now. It looks like a baby-thing I have to suck on and pull the little slurf that is hanging out ......
It helps me a lot with swallowing so I drool a lot less and there is a mouth and lip movement again so I am able to kiss again......
Also my face is getting straighter, my right eyebrow is getting more horizontal.
March 2009, LIS
LIS, LOCKED IN SYNDROME is the wrong name for this situation because we are not locked inside ourselves, but experience this life in a very different way than talking people do.
Because we caan not speak, our body is capable to feel things, like in what kind of mood people are in.
Also we can hear things other people can not, like the water that flows trough the pipes in a wall. A lot of LIS people do not even know they can do this, because it feels like always , they are used to it. I, myself realised this, after it was gone, it disappeared at the instant I started to speak again.
January 2009, Milestone
YES, I have another milestone. With my left lower leg I am able to move it to the front and back of my body. I was already able to move out of my hip when I was walking in the hospital but now I can make the movement out of my knee. I discovered it while I was swimming. A big nose to all those persons who said to me that it was unnecessary to practise so much every day, it would be nonsense........ Now I am the living proof that practising a lot is no nonsense at all. Even though the movement was not my aim, my aim was to make my bloodstream move again, so this movement is a nice accidental circumstance. I move a lot every day because it gives me a nice feeling.
December 2008, New year
Nowadays I know that rehabilitating takes a long while. And it does not go very fast. You have to work very hard to get any result, it does not come easily. Even I rehabilitate very much and sometimes I forget what my boundaries are. This time I had met Joris (Verrips www.depratendecomputer.nl) at our year congregation in August of this year. And enthusiastically we started an inquest what could be the perfect talking machine for LIS I made a list of demands and Joris tried to make it possible. But unfortunately my body said STOP I could not do both and when I have to choose I choose me. Very sad but this was also the reason for me to be late with this update..... Everything goes very well. I still practise in the rehab. New boots are being made, the only thing that I miss are the guts of walking alone. My left leg is getting stronger every day. I also started a course THAI CHI especially for people in a chair. Its great for me to do it because everybody sits down. I like it very much when people sit down when they want to talk with me. Nowadays I am able to talk without the talking machine. As long it is a 1 to 1 discussion, because as soon there are more people my speaking is not understandable. For now I wish everybody a happy new year.
September 2008 The "Rewalk"
First I have to give my opinion about the REWALK. It is not that terrible to be in a wheelchair. It was very obvious the comment was written by someone who never sat in a wheelchair, cause a person who does not see the chair as something terrible but as a helping aid just as glasses are. And the looking in peoples eyes I can understand cause almost no one in a wheelchair look in other peoples eyes and that is far more worse. So I look everybody very thoroughly in the eyes and a lot of people are shocked but it helps.
A very pleasant thing to do when I practice walking is to read everything I see, when I walk I feel like a little child because it can read the milk carton. My physiotherapist is beginning to find me very boring because I stop with almost every sign I see, PRACTICE HALL, WORKING SPACE, ETC.
And off course I look with every sound that I can hear, because for a long time my eyesight was bad I learned myself to recognize every step people made , all the logopedists walk the same way, they have the same tocking sound and there is a physiotherapist who walks like he is wearing swim paddles and there are some persons you can not hear at all, they are just like brothel sleepers?
May 2008, Sailing
Full with excitement I went on a holiday on a sailing ship, because when I was a young girl and not in a wheelchair, I enjoyed sailing very much. Since I am in a wheelchair I sailed before on a special ship, the Zonnetij wich was very stabile, so I went.
The boat, the Ludgerdina, went very shallow and even though my breaks were working this was for me very scary. My wheely went on going to the most scary part of the ship, the waterside.....
and although I used to swim very well, nowadays I am unable to float in the water, so I was terrified. As long I did not move everything was fine, but as soon I started to move I lost total control, I felt Locked In again, and was totally helpless again. This was not a very happy feeling for me. We sailed from Enkhuizen to Stavoren and there I shipped out and went home.
April 2008, Spring
Time flies, it is April already. Over here nice things happen all the time, that is why the time flies.
Over here I enjoy myself with beautiful clouds, because the south side off our house is made of glass so lots of sun and beautiful skies. Very funny we have had a white Easter this year.
Well, spring is in the air finally, I am longing for warmth!
We are practising my left leg some more, and I can feel that, because my foot is changing. Got also a new pressure spot in my booth , so I changed those to my summer shoes. Life is simple with 2 pairs of shoes.
February 2008, Swimming
Like some people know every Saturday morning I go swimming. (I am walking in the water!)
A retired physiotherapist, Max walks with me in the water, also into the water! We are practising this for almost 5 years now and now I can say that it really helps my goal to walk again. At the moment we train my left leg some more, I walk zigzag / diagonally trough the water and my left leg does what I want (although pessimists said that it would never do that again!) and is not just being there. Almost every day I try to walk at home with Jetze (my husband) and now I have the feeling I am walking on 2 legs again, for a long time that feeling was gone......
September 2007 Progression
I am very happy because I have made progression
Which I was working for very long......
When you're in a wheelchair you can get the feeling your feet are somewhere behind your ears, I had that feeling for a long time. In the rehab-centre Lindensteyn in Beetsterzwaag the medical staff putt me on my feet again for the first time after my coma with the help of a stand up table(a long bench witch I was strapped on) and slowly I was putt on my feet. Inn the beginning that felt very strange but that was my beginning to stand for 5 minutes a day.(in the beginning 5 minutes were very long for me ) and after a few weeks people thought that I had enough strength in my muscles to stand practice by another table next to a secretary of the centre.
I was standing there with the help of an safety belt behind my ass and I started with 5 minutes and now I am still standing every day for half an hour now. Today I stand without any helping aids only I am leaning with my left hand against a post bare in mind that I still am not able to move my left hand so when I fall I fall like a bag of potatoes
Nowadays I am practising to stand lose with an ergo therapist and we are doing something different with my right arm. so I am learning to do things at the same time again, cause everything was gone with the coma.... Now I can say that by practising for a long time I succeeded to put my feet back on the ground, that I am able to put my bodysuit on just how it belongs to be and its worth the effort even though a lot of people said that it had no need, people who think they know....
When I talked a while to another LIS, Wim Tusveld, we came to a surprising conclusion, we were able to do something that talking people forgot about they never did anymore.
Sometimes we were able to hear other people think...
No, nobody is crazy, but because we were not able to speak , so we were doing things instinctively.
now I understand that I used to hear my cat when she came into the house. She always made a noise when she came into the house. Too bad, at the time I did not realize that I could hear her thinking.
Ever since I am able to talk a little again the ability to read minds is gone or I do not take notice of it anymore.
also that my swim teacher would walk behind me and I thought he was talking while we were walking in the water and told him he was very quiet lately because I thought he talked all the time but he never said something. I heard him thinking.
Actually nowadays I try very hard to send out thoughts and also I am trying to hear and you do not have to look in other peoples eyes, but it can give a nice feeling to look in each others eyes, people can start to hear thoughts when another person is around. it seems to me also an explanation why animals almost every time are able to catch a small animal, the big animal can hear the thoughts of a mouse.
Also it can be an explanation that all the paranormal persons are only doing something every person can do. Only you need to take time for it.
Apparently a LIS has all the time in the world. And now that I realize this|: being a locked in person is not so bad at all.
Nice to announce a big step forward again, my stomach sonde has been removed, I drink everything orally now. a tit mug for babies I use drinking. before people used a normal mug which used to result in having fluid in the longs, because the sips were to big and eventually people got pneumonia and usually died of pneumonia.
With a tit mug the fluid comes with little sips into the body and because of my that thing in my throat was not working fast enough, sometimes the fluid ran into my longs.
But after a while I was carefully trying and the ting in my throat started working again and also old reflexes came back and after practising for a very long time I even did not use my stomach sonde any more so I talked to my physician and we removed the thing.
now I can find a job on a carnival with the freaks because I have 2 belly buttons!
Now I notice my body is getting stronger. Every day with my husband I practice, together we walk a bit, I lean on a rollater and he supports my left hand from slipping of the rotater. He can catch me should I fall down, but I do not fall...My standing-up is getting steadier, so it is getting better every day at the time. Even though I notice I can walk a little bit further every day, it keeps on being exhausting. Unbelievable walking takes so much of my strength. Also more people can understand my blabbering, very nice off course but there should not be too much noise around , because I am not able to overspeak that. In about 2 more weeks in UTRECHT there will be our congregation and that is very exciting. Also it is possible for me to expose some of my art, just to show what I do with my time.
A few days ago on the TV I heard that 44% of our teens in Holland want to emigrate from Holland Do they not realise that they become foreigners When we look at how Dutch people behave towards foreigners it will not be different in another country. Even a white skin will not help, a cheese-head stays a cheese-head everywhere around the globe. And everywhere they want to go they stay being imported.
Indeed, a lot of comment I have about a lot I see happen around me. And I talk about it because now I have this column. First would it be possible for every Dutch to imagine that HOLLAND really is nothing more than a little dot on this earth
And the world would really be able to turn without us.....
Also the stupid idea to put every magazine into a plastic thing, it is a crime for people who are able to use 1 hand
And I think it is very bad for the environment. And why is it so necessary that text on a food-package should be so small. It will be very unreadable for the elderly but also for the visual handicapped like me.
And also I am able to mown about the hole in the ozone-layer. First let the government do something about the useless flights of the air-force, than we would be much further to Kioto
|Marjan February/March 2007|
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|Updates of Marjan 2002-2003|
|Dutch||Nieuwsbrief week 35 2002|
|Dutch||Nieuwsbrief week 18 2002|
|Dutch||Nieuwsbrief week 12 2002|
|Dutch||Nieuwsbrief week 6 2002 van|
|Dutch||Nieuwsbrief week 48 en 49|
|Dutch||Nieuwsbrief week 44 tem 46|
|Dutch||Nieuwsbrief week 41 tem 43|
|Dutch||Nieuwsbrief week 38 tem 39|
|Dutch||Nieuwsbrief week 34 tem 35|
|Dutch||Nieuwsbrief week 30 tem 31|
|Dutch||Nieuwsbrief week 27 van|
|Dutch||Nieuwsbrief week 22 van naar Zuidhorn|
|Dutch||Nieuwsbrief week 21 van verslag gesprek met dr. Pondaag|
|Dutch||Nieuwsbrief week 19 van|
|Dutch||Nieuwsbrief week 18 van Locked-in|