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.

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 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!

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.

The Diagnosis

diagnosisThe Diagnosis

At the end of the day, a very tall doctor entered the ward and stopped at the end of my bed. A shorter, female doctor, who is a neurologist in training, joined us as well.
“Ma’am, we finally found the cause that explains all of your symptoms,” he said. “You have a blood clot in your brainstem, and that is why we couldn’t find anything on the first scans. You will start receiving medication which will reduce the possibility of a new stroke.”
I did not know how to respond, and it was hard to understand what he was talking about. Talking and listening seemed very tiring these days. Where he was standing felt like a great distance was between us, and I thought his words would become clearer if he would come and sit closer to my head.
“We’ll run some more tests to see where the blood clot came from,” he continued. “We’ll also get some more blood tests and make an heart echo. A physiotherapist will come by to exercise with you, and my cohort here will stop by regularly to check on you” — he nodded toward the female doctor.
I really don’t care anymore. It was a strange world these days, and I could only focus on one thing at a time. Right now that focus was directed toward being extremely tired.

“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.”