lunchLunch is not just a “moment to eat”, it is also a “moment of therapy”. It takes a while before I realize that the therapist slang is peppered with “moments”. For a layman, it is difficult to immediately understand the logic of the structure around lunchtime.

There is a select group of people belonging to “the lunch group”. I understood that this group existed, because people had to leave therapy earlier due to the lunch group. What was done exactly, was a mystery to me. Later I realized that, if you can walk a little, you are supposed to walk from your wheelchair in the hallway to your seat at the table. That is an “exercise” or “therapy moment”.

Also, the more advanced patients get the opportunity to pick up their own plate, knife and fork from the buffet to set their own table for lunch.

I missed that explanation in one way or another, so I cheerfully sit at the table with a nice gentleman, who I talked with so much at breakfast. There was a great commotion among the lunch staff. “You should be at your permanent place!”, I’m punitively addressed.

Dumbfounded, I ask where my permanent place is then. That is the leftmost spot on the first lunch table as you enter. I roll in that direction and go sit at the table there. A lady with a walker came to sit next to me. She is clearly not a talker, and looks like she is reluctantly having lunch. So, we limit ourselves to logistics.

(Can you pass me the buttermilk please? Thank you.)

Later, a few others join us and introduce themselves. We talk small talk. After 10 minutes, I have finished my cheese sandwich, a cup of buttermilk, coffee and a pear, and that is it. It is a quarter past twelve. Perfect – I can take a nice long rest, because I’m quite tired of the morning program.

“We are not supposed to leave the table” whispers a table companion to me, when she sees that I am getting ready to drive away.

We are not supposed to leave the table? Says who, and why? It’s the kind of remarks that gives me rebellious tendencies immediately.

It isn’t much fun at the table with this company, while I can snuggle in my bed.

I share my feelings with my table companions. To my surprise my neighbor with the walker agrees with me. If I want to start a rebellion, she will certainly join in, she says. Unfortunately I’m not the hero that I pretend to be, and remain seated until 12:30PM.

Fortunately, a nurse explains to me why you are supposed to stay at the table until 12:30PM. There are patients who need to have lunch in a low-stimulus environment. If everyone just rolls back and forth, skips and beeps during lunch then that is too stressful for them.

See, I can understand that. And that wouldn’t initiate rebellious tendencies. It would just have been nice to be told of such rules in advance. Weeks later, I hear that the fixed area is made based on the length of the person and the height of the lunch table. That I can understand as well. It is just unfortunate that it is not always explained to new patients. That would have saved a lot of aggravation and stress on all sides.

This blog has been translated by Monique Gregor – Van Tol


The transfer and the salsa


Since it was Queen’s Day, followed immediately by the weekend, my first four days were holidays. I had to rely mainly on nurses during this time to train and guide me. Afterwards, the nurses and therapists told me on numerous occasions, “Everything is therapy.”One of the first parts of this therapy I had to learn was “The Transfer.” When I thought of the word “transfer,” images of Schiphol airport, planes, hotels and holidays came to mind. Here it had a different meaning. The word “transfer” now meant between my wheelchair and something else. It seemed easy, and it was, for normal people. For people like me, though, it was a complicated operation. To start, I had to plan in my head what I had to do. Then I’d take the first and most simple step of calling the nurse to let down my bedrail. Someone that I didn’t know had already placed the wheelchair parallel to my bed with the brakes on and the chair facing me. I lowered the bed to the chair’s height, then turned my legs over the bed’s edge and sat up straight. This meant I had to drag my limp leg over the edge with my working arm. One doesn’t realize how heavy a limp leg is in reality. If it wasn’t for the nurse cheering me on and other natural powers forcing me to leave the bed, I would have fallen back in the pillows to sleep a bit more. As it was, I had to pause for a minute to rest and regain some strength. The nurse gave me a lot of instructions that went in one ear and out the other. First, I had to raise the wheelchair’s armrest. Next, I had to put my feet sideways of the floor. Then, my right hand was placed on the wheelchair’s armrest, while my left hand stayed on the bed for support. When my left hand bunched up into a fist, I was instructed to stretch it out flat. “Then wiggle your ass to the wheelchair,” the nurse said. “It’s just like the salsa.” My youngest daughter though this was hilarious. She imitated the nurse and got a lot of praise. It may have been the salsa to her or other people, but to me it was a chance to forget something: brakes on the chair, raise the armrest, feet in the right direction — very frustrating. The nurse would stand back and watch my attempts. She did this on purpose so I better learned what I had to do. As an educational psychologist, I recommend this approach in training. As a patient, however, I wanted to smack someone every time I forgot something. Especially when my youngest daughter added to the humiliation: “Look mom, it’s really easy! Just like the salsa!” The nurse helped me to educate my daughter. She was a cozy grandma, and my daughter really liked her. “Do you know how hard it is for your mom to go and sit down?” the nurse asked my daughter. “No,” she responded. “Go sit on the bed with your feet on the ground,” the nurse instructed. After my daughter complied, the nurse continued, “now lay down flat on your back on the bed.” The nurse stood with her legs against my daughter’s, then said, “try to sit up straight without the use of your hands.” That was a challenge for my daughter’s muscles. She managed to sit up, but her face was red and she moaned a lot. “Hard, wasn’t it?” the nurse asked. “For your mom it’s much harder.” My daughter looked at me with admiration. “When you wake up tomorrow,” the nurse continued, “try to realize how many muscles you use when you are getting up and out of your bed.” My daughter promised she would, then had to go home.

The Rehabilition Center

kroketThe reception in the rehab center felt like a warm bath. Hubby and I were greeted by a male nurse named Brother Bernhard, who apologized that the wheelchair mechanic wasn’t available that day. He informed me that I would have to make do with a general wheelchair until after the weekend. This didn’t really bother me since no one knew I was coming here until very recently, and I knew it took time to adequately prepare for a patient’s arrival. Also, I could still move around in the general wheelchair — albeit very slowly.
I was wheeled to the room I’d be staying in. It was a double-occupancy with a sink situated between the beds and curtains that could be closed around the beds for privacy. The previous room’s occupant had just left the rehab center, so I would have the room to myself for a few days. The time and quiet to reflect on everything was going to be appreciated.
Brother Bernhard arrived with the paperwork. He was very precise and detail oriented throughout the procedure, and he asked both my husband and me all kinds of questions. He was meticulous with writing down our responses to his questions.
While taking my blood pressure, Brother Bernhard asked me what I wanted to eat for lunch.
“A cheese sandwich and a cup of coffee would be nice,” I replied.
“Would you like to have a croquette as well?” he asked.
That was a really nice surprise. Lunch turned out to be one of the best I’ve had in a while. Wonderful.
I was tired from the ride to the rehab center and lunch afterwards. I was taken back to my room and helped into my bed.
“You can go to sleep now,” Brother Bernhard said. “Your husband and I can organize your closet and the registration.”
A red push bubble was attached to my bed as a life buoy. If I ever needed help with something, I could press it and people would come to assist me. Rails surrounded the bed, which made me glad because I worried that my paralyzed side would fall out of the bed without them.
Later, I discovered the lay-out of the rehab center, which was quite simple. During the day nurses came in and told me their names and what their responsibilities were. They were all incredibly nice and understanding; although, immediately after we met I forgot their names, what they looked like and what we talked about. Nobody cared about that, though, because they were used to people with faulty brains. Memory loss was one of the many symptoms they witnessed here.
Suddenly I heard loud cries: “I NEED TO SHIT, DAMNIT!” I was shocked and surprised. Then a nurse came along, and I heard him talking quietly to the patient in need. Lack of impulse control is a symptom of brain diseases, I learned later. Also, I heard loud whining and crying throughout the night. It seemed that patients who had a terrible accident were reliving their experiences. It must be terrible to go through these experiences once again. Terrible for the patient, and terrible for his roommates as well. In some rooms there were 4 patients in one room. It seemed a lot to me, but obviously there wasn’t any other way. Later I noticed that the staff tried their best to get the noisy patients in a separate room, but there wasn’t always one available.

Transfer issues

fax rip

The Rehab Center:
The rehab specialist arrived on Thursday to run some tests and ask some questions:

Him:                                                                                             Me:
Can you stand?                                                                     Only briefly
Raise your leg?                                                                      No
Fetch something with your left hand?                     No
Do anything with your left-hand side?                    Raise one finger 3mm

“I propose to have you admitted to the rehab center,” he told me with a smile. “You will improve more there than anywhere else.”
That sounded good to me. I knew I had a lot to work on because I couldn’t do anything in my current state.
“It’s hard work, though, in a rehab center,” he warned me, which I thought was a peculiar remark. As a CVA patient, everything I did was hard work. Just getting out of bed was more difficult for me than mountain climbing would be for you. I needed the agility of an acrobat just to put my pants on in the morning.
Later on I learned from other patients at the rehab center that it wasn’t made available to every CVA patient. One gentleman, who was my age and paralyzed on the left side as well, was first sent to an old-folks home. He lived there like a plant for three months before the doctors acknowledged that he’d progress more at the rehab center. I considered myself lucky to be sent directly there, and I thanked the universe that an available space was open for me at that time.
Another lady came to visit me to ask whether I would participate in the Explicit Research Project. She explained how its research would measure the effectiveness of different treatments on young CVA patients. I knew how hard it was to get appropriate candidates for research, so I was happy to oblige. The lady provided me with a leaflet, and she said she would follow up at the rehab center.
The doctor in training stopped by. She was working hard to have my transfer file ready before I left the next day due to its importance. She told me to stop by the secretary before I left and ask for my file if it wasn’t brought to me beforehand.
The next morning two paramedics were waiting to take me with them. I was rolled onto a stretcher and wrapped up in blankets before being strapped to it. Suddenly, I realized I didn’t have my transfer file yet, and I told the paramedics that we needed to get it from the secretary before we left. They agreed.
The secretary was enjoying a cup of coffee when we showed up. When I asked her for my file, she pretended to look around her desk briefly, then told me she couldn’t find it.
“It’s not a problem,” she assured me. “We will fax your papers to the rehab center.”
I couldn’t believe what I was hearing. Faxing? What century did we live in? And who spread the myth that information via fax was confidential and safer than email?
I repeated that the doctor in training had moved heaven and earth to have my transfer file ready so that I could take it with me. I wanted her to retrieve it for me now. The secretary pretended to put forth another fake effort to look for my file. Her body language spoke louder than words, telling me she didn’t want to find the file. This was her territory, and she was in charge. Period.
I realized I wouldn’t win this battle and told the paramedics we could go. Just when we were past the doors, I heard high heels clicking in the hallway. It was the doctor in training who came by to see if I got my transfer file. When I told her I didn’t get it despite multiple requests, she hurried back and plucked my file from a pile on the top of the secretary’s desk. If looks could kill, the secretary would have been dead by now.
“Here you are,” the doctor told me as she passed me the file. “This way you’ll have all the information you’ll need in the rehab center.”
The paramedics saw the entire episode, but they kept a neutral expression on their faces. They whisked me off to the ambulance and loaded me inside. One paramedic sat next to me as we travelled, and I asked his opinion of what he just witnessed.
“Well,” he replied, “patient transfers usually have flaws, but this is a big one. One cannot change the system by themselves.”
The Large Organization is back.
We discussed what we do, and it turned out this paramedic was also a trainer in healthcare. I told him about my plans to share my experiences with managers and directors in healthcare in order to get the opportunity to improve things — in this hospital, for instance. He thought that was a great idea, and when we arrived at the rehab center (in record speed), we exchanged contact information just in case. Hubby always carried some of my business cards for networking instances like these. The next day we found each other on Linkedin.

The importance of excercise

Excercise guide

It is quite important to get up and start excercising after a stroke, instead of staying in bed and do nothing. It is quite hard to do so, as everything is hard and takes tons of energy. Muscles don’t do what you want them to, and even the smallest bit of excercise makes you feel  you have run a marathon.

One of the professionals visiting me in the hospital (I do not remember who it was and what her role was) left me an excercise guide. It is recently developed, and quite self explanatory, because of the pictures in it. You find the information on this booklet here:

Excercise guide for stroke patients

The booklet is quite clear, and there are tips for family and others on how to help you. I tried to stimulate my arm before I got this  guide, but now I have even more excercises at hand, which have proven to be effective. Another advantage is that I can do them on my own, whenever I want, without a therapist.

Later,  in the rehab center,  I learn that the book and the approach in it is quite new. I consider myself lucky that I can try this approach already now, and I start immediately with the excercises. I visualize the ones I am unable to perform in practice, as visualization helps your brain to form the links needed to do the excercises later. When you are unable to do something, you just need to visualize as detailed as possible how you would do it.

I truly hope that I can help someone with this guide and the information. Excercise is vital for rehabilitation!

Cardiology and the ECG (electrocardiogram)


There is a fresh baker with a thriving business in the town I live in. He bakes an assortment of delicious, wonderful things. At times, when the queue management system broke down, chaos reined at his establishment. When I saw how the queue management system was run in Cardiology, I was reminded of my home-town bakery during a chaotic episode.

Numerous patients had to go to the Cardiology department to have their heart checked since that organ was involved in most diseases. It’s natural to assume that a substantial number of those people would arrive in a wheelchair. I expected a state-of-the-art system that would manage the walking and wheelchair-bound patients at the same time. Unfortunately, that was not the case.

When we entered the hospital, we had to take a lift. There were six elevators spread out over a short distance, and it was a game to see which door would open first. As one slid open, my husband had to practically sprint to push me and my wheelchair into the elevator before the door closed.

We ascended to the Cardiology department and rolled to a stop at the counter in the reception area. My nose barely cleared the counter due to its height, which was not really a good start for equal communication. I was given a number and instructed to move on to the waiting room.

The waiting room was way too overcrowded to allow me to maneuver with my wheelchair. I was the only wheelchair-bound patient at present, but what if more showed up? Through a little force, my husband was able to create a space for me at the end of the line; although, it prevented anyone from getting past me. After a short while, I was asked to move along, but where could I go when I was hemmed in like I was?

Eventually, my number showed up on the electronic board. A beaming nurse dodged through the crowd to collect me.

“Hello,” she said. “My name is Blonde. Jane Blonde.”

Jane Blonde came to collect us for the ECG (ElectroCardioGram). She escorted us to a row of tiny cubicles which were set aside for the ECG patients as a changing area. Today, I was the only patient there.

Jane pointed at one of the cubicles and said, “please undress your upper body and lie on the bed. I’ll be with you shortly.”

A couple of minor details seemed to have escaped Jane’s awareness. First, my modestly proportioned wheelchair could not fit into any of the cubicles. Second, my entire left side was paralyzed and could not walk, much less undress and lie down.

Hubbie had to drag me onto the narrow table. Afterward, my left leg and hand fell off. Hubbie tucked both back onto the table, and I laid on my arm to ensure it stayed put.

Jane squeezed herself between my husband and the computer, blocking the screen from my view.

“What’s your name again?” Jane asked. As I told her, she typed it into the computer.

Suction cups were stuck to various parts of my upper body, and Jane asked me to relax and stay calm. Once the reading was complete, a printout was made from the ECG.

Mrs. Blonde continued to be oblivious and said, “you may dress yourself and get off the bed now.” My paralysis hadn’t vanished in the last thirty minutes, so I had to rely once again on Hubbie to dress me and get me back into my wheelchair.

Jane gave me a copy of the ECG printout … which had the wrong name on it. Apparently, Jane incorrectly typed my name wrong into the system. When we pointed this out to her, she responded cheerily, “oh, you can tell it to administration.”

The administration officer seemed shocked by the name error on the ECG printout. She ended up erasing my misspelt name with some white-out and wrote the correct spelling over top with a ballpoint pen.

“Please give this to the cardiologist,” she instructed, then handed it back to me.

This was the only aspect of the ordeal I had confidence would go right — I could trust myself to deliver the ECG printout in its correct state to the cardiologist. But suppose I had something to gain by changing some data? A little white-out and a ballpoint pen would suffice.


During my time in the world of Biotech, I got acquainted with GMP (Good Manufacturing Practices). These practices consisted of procedures that, if followed precisely, would ensure minimal mistakes and optimal work efficiency. Mistakes in these procedures could cost millions of dollars — or worse, human lives.
One of GMP’s principles was a “Single Point of Entry.” Basically, this meant that all data would be collected only once at the outset, then forwarded to all the parties who would need it.
The most optimum means to effectuate this concept in a hospital setting would be for the patient to enter his or her personal information (name, address, insurance, etc) into the system, then the administration officer or nurse would verify its veracity by comparison with a passport and insurance card. The system itself would be programmed to automatically pass the information on to all doctors, nurses, and other personnel that had need of it.
In the Emergency room the staff seemed to take the opposite of GMP’s approach. My husband had to give my information to the doctor; then, later, he had to re-give it to a nurse. Once we entered the Medium-Care unit at the Neurology ward, my husband was once again asked to provide my date “just to be safe.” I must admit that their lack of communication did not make me feel safe; on the contrary, it made me feel worried.
When I was moved to the regular ward in Neurology, I noticed a large blue binder with my name on it attached to my bed. I wouldn’t be me if I didn’t check its contents. To my astonishment, I saw the staff had a completely different General Practitioner listed as my doctor. The listed doctor’s name wasn’t even close to my GP’s name, nor did he live in the same area of town as me.
This sparked an intense desire to have multiple questions answered, and I wanted those questions answered NOW. Who was getting the information of my whereabouts? Was my medical information and status being forwarded to the proper people? The secretary was not in the building, and none of the nurses I talked to were very helpful.
In Holland there was a lot of hassle about the security of electronic medical data being breached and made available to the public. There was more emphasis on people’s privacy than on accuracy and efficiency. I appreciate the fact that my doctors worry about my digital privacy; however, I would appreciate more the administrative security of The Large Organization (TLO) making sure that these simple mistakes did not occur.

My husband called our GP, and she wasn’t even aware of my current situation. It took over three weeks before she got a perfunctory letter with no informative value letting her know I had been in the hospital with a CVA and was now in a rehab center. In the city of The Hague, 20 km from my hometown, the GPs are informed within a day by email when something happens to one of their patients.
From that moment on I made sure to check everything that was written about me both on paper and in the computer.
To be continued!