Lessons learned


One of the things that is done in companies is to evaluate projects to discover the “lessons learned”. I have learned that it is not possible for me to keep up two blogs and I had to let my english blog lay dormant for a (long) whilee. I do apologize to my english speaking friends and colleagues and I hope to make it up to you by writing an occasional post in English, albeit not as often as the original blog.
It has been 4 years now since my stroke. There are definately some lessons to be learned here.
– Keep up with the medical information you need to know to recognize serious illnesses. I use the site of dr. Weil and dr. Christiane Northrup as important sources of information, together with a big book of medical information for the family to determine whether you have something serious and what you can do about it. A book is always available, not dependent on internet, and has checklists and pictures to show you what to do. Other programs may be of interest  as well. In this program is the role and risk of pre-eclampsia discussed; if the doctors’ post had taken that into account they would have searched for stroke clues sooner. A book is always available, not dependent on internet, and has checklists and pictures to show you what to do.
– Make sure you have a copy of your medication and medical history updated and with you. It is difficult to remember when you arrive at the hospital what you had and when and what they gave you for it.
– Make sure there is someone with you who can drive you to the doctor or to the hospital. This someone is also the one to record the actions being taken, and meds being given. It is not natural in every hospital to give the patient a clear insight in what is recommended and given to you.
– Make sure you get a paper copy of everything they write about you.
– Check your patient file or have it checked and ask a copy
– Inform your GP yourself or have someone inform them. Information does not always reach your GP.
– Give your pharmacist permission to share data with the hospital about medication.
– Have someone check whether all information is correct and whether it has reached the correct persons. This is NOT a given, many mistakes are still made everyday.
– Have someone check alternative treatments of what you have. Sometimes you are not told all the options.
– Once you are out of the first critical phase, sit down with your GP and evaluate what went well and what could be improved. Also agree on a course of action for the future. I see my doctor every 3-4 months for a bloodpressure check and I gather all non urgent questions for that appointment.
– Do not wait to go to your GP when you feel something is wrong. It is better to be treated by your GP then by an emergency room doctor who does not know you.
– Accept that mistakes can happen and move on with your life. Mistakes were made in my case, but there is no use spoiling my life and that of my family by moaning around. Nobody gets better from that. Be kind to doctors who acknowledge a mistake has been made. Be tenacious to doctors who do not acknowledge there has been made a mistake and make sure it is not sent to “the large organization”
– Do all that you can to make sure mistakes are prevented and lessons learned. Share your story. Write a blog. Go to the media if you have the energy for it. Advise others on how to treat a patient.

And don’t forget to enjoy the fact that you are alive. Life can be over before you know it , so it is best to enjoy every minute!


Dimethyl Sulfoxid


After my vacation I was visited again by an old friend: the neuropathic pains. They were worse than before, and the Lyrica and paracetamol (I learned it is called acetaminophen in the USA and Canada) didnt help sufficiently to kill the pain.

During the sleepless nights I was surfing for a solution and there I found a site in which topical creams were promoted. My doctor mentioned creams with dimethyl sulfoxid, not exactly the same as the site I visited but according to my doctor this was almost the same, so it was worth a try. I started applying it five days ago, and I can say it does (partially) the trick. At least I was able to sleep properly, and that is worth its weight in gold!

Patients seem to react in different ways: for some it works, for others it doesn’t. You may taste or smell garlic when you use it (I did not).

Yet when you need something for neuropathic pain, it is definately worth a try.

Twitterfest and scootmobile

One of the slogans of internettravelcompany Orbitz, is “Get it. Use it”. I would like to propose a change to that slogan, being “I want to use it. Do you get it?” The answer to that is a resounding NO.
I had booked my tickets for the summer vacation at Orbitz and that went smooth – except for one thing: there was no way I could express my need for the transport of my scootmobile.

I know that it is possible to bring a scootmobile along – however the airline needs to give permission upfront and it needs to check that your scootmobile is in line with the rules and regulations for a flight.

Then my Quest for Assistance started.

At first I decided to mail KLM as I was under the impression they would be the operators of this flight. I mailed them but it took forever to get an answer. They told me I had to get in touch with Orbitz, as they would not handle requests directly from travellers themselves. So i did manage to locate Orbitz Cucrtomer Service Chat, and the following discussion took off:

Keren: Hi, my name is Keren. How may I help you? 
cvapatient: Hello, 
 Keren: Hi, 
cvapatient: I need assistance because I am disabled and have a scootmobile 
cvapatient: the transport of the scootmobile needs to be requested by Orbitz to the KLM 
cvapatient: So that is what I am asking of you 
cvapatient: I do have a declaration from my doctor that it is needed 
cvapatient: and I have flown with this scootmobile before 
 Keren: I’m happy to assist you today! Let me check your reservation, just for security reasons may I please have your billing zip code used to book in? 
cvapatient: My ZIP is *****
cvapatient: and the billing code is 
cvapatient: ***** 
cvapatient: (KLM) 
 Keren: Thank you! 
cvapatient: It is a small scootmobile – GOGO traveller PRIDE. It meets all the requirements 
 Keren: Ann: I was checking the options we have and we only have the option to request wheelchair assistance with the airline in this case will be necessary to request it with the airline directly. 
cvapatient: KLM does not accept that and refers me to you. I don’t need assistance in the aircraft though- I need their cooperation in the transport of my traveller scootmobile 
cvapatient: I have arranged the assistance to and fro the aircraft. 
cvapatient: But they need to know I come with a portable scootmobile as it needs to be stored in a special way. 
 Keren: I understand that you need, but we do not have the option to do. 
cvapatient: And I need them to allow me to get into the aircraft first with the other disabled passenges so I can walk slowly to my seat. 
cvapatient: KLM refuses that request directly from me and maintain it should go through Orbitz 
cvapatient: So now I am stuck.
 Keren: I suggest you to contact us at 1-877-808-6077 and our team will contact the airline on your behalf.

cvapatient: It would have saved me a lot of scarce energy 
cvapatient: Will call them now- Tx for your ‘help’ 

I was caught in the middle!
To be continued

Research patient

Ever since I had my stroke, I have been offering myself as a guinea pig for scientific research. From day 1 I have given blood to analyze and been a test patient for students. In the rehab center I also participated in several research studies. This was quite satisfying as I felt at least someone was gaining some benefits from my disease and situation. It was something I could do, and only stroke patients could do. It made me feel useful. All this research had one theme in common: the effort for the patient was way too much. It took too long, and the researchers somehow hadn’t taken that into account,. Everything longer than 30-60 minutes (depending on the phase of the rehab a patient is in) is too much. Even from 30-60 minutes research time, a patient needs at least a day to recover. Last week I participated in the NEURAS research in the LUMC. I was invited at 9:30. a good time to start. First I had to go through the standard tests, used in rehab, to evaluate the level of the patient. This consisted of a questionnaire and several excercises, where little cubes had to be lifted and glasses of water had to be poored with my bad hand. @neuras3 This took about 30 minutes. Then I was offered a cup of coffee (very important to keep your patients watered and fed), before I had to be strapped into the next research setting. I was connected to a robot and a computer. I had to ”drive” a virtual car while the robot did several things to my arm, in order to detect spasms and reactions of my muscles. I had to drive the car over different roads, and I could feel in the robot the effect of the structure of the road. While driving, I had to collect coins that were scattered over the road. It was a fun game. After that, tasks were added. I had to listen to a voice saying “high” and “low” at both a high and low tone. Sometimes the height of the tone did not correspond with the meaning. It was extremely difficult for me to focus on the auditory task while driving the car and trying to collect coins. In fact, I was not very good at it. Then an added difficulty was introduced. Some of the coins suddenly changed into different symbols, and those had to be avoided. It was at this task that my brain started to melt. I couldn’t do it, so my body decided to skip the ”high-low” task altogether,  in order to leave some brainpower for the other tasks. @neuras2After an hour in total I announced I was  getting tired. This was something I learned from my ergotherapist: at the first sign of tiredness, say something and prepare yourself to stop. People listened to what I was saying but wanted to finish this part of the research. I could relate to that, so I pushed myself to continue, in order to finish most of the research that was planned. After 1,5 hour I was getting exhausted. I announced that I needed to stop very soon, as I was almost collapsing on the spot. The researchers tried to motivate me to continue. What if I took a lunchbreak and continued afterwards? I told them I would be happy to  return another day, but I could not continue that day. This caused some commotion on the researchers side, but we agreed to continue two weeks later. When I came home, I went straight to bed, slept for 3 hours, and had dinner. After dinner I fell asleep and slept until the next morning. The second day I stayed in bed while sleeping on and off. I just didn’t have the energy to walk. Today is the third day. I am out of bed, and will go to fitness in the afternoon. My husband stressed that I should make this known to anybody in research working with CVA patients (and maybe this applies to other neurological diseases as well). Everything that takes more than 1 hour is too long for a CVA patient. And even an hour may be too long, depending on the task ahead and the phase of recovery a patient is in. Researchers and professors, please take this into account when designing research. Go and visit a rehab center. Interview patients, nurses and therapists. They can enlighten you about the timespan you can use to conduct research.


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

Good Morning!


The start of the day in a hospital is an interesting event. In my ward all of the beds only had curtain partitions separating them, so i could hear everything that was happening around me. One particular exchange between a nurse and a patient caught my attention.
“Good morning, Mrs. Jansen!” a nurse stated loudly. “Time to wake up! Did you sleep well?”
“Mwah,” the patient groaned.
“Do you know where you are?” the nurse asked.
“At home.”
“No, you’re not at home. You’re in the hospital.”
“Oh,” the patient responded groggily.
“You had an accident and were brought here,” the nurse continued.
“Do you know what day it is?”
“No, today is Sunday,” the nurse corrected. “Do you know what year it is?”
“So I’m not in Katwijk?” the patient asked.
“No,” the nurse answered. “You’re in a hospital in Leiden.”
“But I am at home, yes?”
“No, you’re in the hospital,” the nurse explained patiently. “You’ve had an accident.”
A brief moment of silence ensued before the nurse asked the patient again, “Do you know what day it is?”
“No, it is Sunday,” the nurse replied. “Do you know where you are?”
It felt like deja-vu as every subsequent conversation was virtually identical. Everyone in the medium-care unit had some form of memory loss, including myself. I knew my name, that I had a stroke, and that I was in the hospital. The year was also within my reach, but the day eluded me. There was a clock on the wall with big letters, but I would forget what it said almost immediately after looking away from it.

I felt like a goldfish with a three-second memory. Even though my brain worked surprisingly well, my memory was like a colander.
To be honest, I really didn’t care anymore. Who had been by to visit? What did they say? Have I told you this already? Whatever.
I was in my bed leaving the management of my life and the rest of the world to others. I could not tolerate many visitors as they wore me out. Only my husband and kids were welcome at anytime, and Hubby took care of “visitor management.” I would keep my friends and acquaintances informed by short emails.
Reading was very difficult. I used to read books by the meter, but now I could only read a single one page story per day. Books by Toon Tellegen had stories that were simple yet very nice. One of my oldest and closest friends provided me the book: “Why is nobody angry?!” by this author. It was very apt, as it was about the kind of anger that crept up on you every now and then as a patient. If you want to find books by this author, you will find them on Amazon.
I was not often angry, yet sometimes I was sad. “Sunny spells with cloudy periods and the occasional rainstorm,” would be a nice mood forecast, with an intermittent cloud on the horizon for the following day.

“Ma’am, you are a mystery”


One of the doctors who taught medical students stopped to speak with me. “I would like to ask you to cooperate as a patient in an examination for medical students,” she said. “You are an interesting case.”
“How will that proceed?” I asked.
“Well, first you’ll be placed in a wheelchair…” she began before I interrupted.
I emphasized that I would not be put in a wheelchair because my paralysis made me unable to sit properly. I informed him that the only way I would participate would be while I was lying in a hospital bed. They capitulated and converted the lecture room so my hospital bed would fit in it.
Since they came to collect me early, they caught me in the middle of eating a diced apple. The nurse suggested that I take the apple with me; thus, after a wobbly ride through the corridors due to the difficulty of steering a hospital bed, I arrived at the lecture room with apple in hand amidst three kind students.
I was surrounded on both sides of the bed by five female students. It was remarkable that they were all female. The students were committed and smart, and they were instructed by two experienced, older professors.
I was impressed with how the professors taught. First, the students had to find out by themselves what was wrong with me. They would ask me probing questions while their professors encouraged them to ask more. The professors would prod the students to question what else may be the cause of my symptoms. “Never assume anything,” they instructed. I wish I could give the professors an award for their great teaching skills. Instead, I tried to be the best guinea pig patient I could be. I only hoped that once these students became doctors, they would take the same amount of time to question their patients to ensure they had all the information they needed to make a proper diagnosis.
During this questioning, the students moved my limbs and checked my reflexes. I had one that was typical for a paralyzed foot, and everyone was allowed to try to get the reflex going. It tickled and made me laugh.
Finally, the professors asked the students what their verdict was. What was the diagnosis?
The students frowned and responded, “we don’t know what it is, but we do know what it isn’t.”
On the way back to the ward, one of the students gave me her verdict: “Ma’am, you are a mystery.”