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!


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!



One of the nurses has seen my fights with the toilet chair.  She brings a purple folding roller. She noticed I can stand on my right leg, and that I can hold something in my right hand.  The left hand side is immobile.

“Look here” she says. “This is Bea*. I think you will enjoy her very much”. She shows me how Bea works. I stand with my toes to the handlebar. I put my left hand with my good hand on the handlebar. On both sides two small boards are left down so I can sit on them. The nurse rides me to the toilet, and I can sit on the toilet without trouble.

The nurse leaves me alone and I really enjoy the peace and quiet. No people who can hear me or see me. Privacy!

I hear that my acquaintance with Bea only happened because one of the nurses noticed Bea was not doing anything at another department. She asked whether it was okay to relocate Bea to the neurology department. Because Bea was only collecting dust at the other department, she was allowed to go.

I am happy and shocked at the same time. What if the nurse did not run into Bea? The nurses of the other shifts hardly know what to do with Bea. Because Bea is the only thing I want to deal with, I explain to different persons how she works. Sometimes I meet a true “Bea-expert” who shows me the tricks of the trade.

When I am transported back to the ward, I manage to wave like the Queen*.

Now we need more Bea friends for other departments. Insiders tell me that can take a long time. Your Majesty, can you lend a hand?

* during the time I wrote this blog, Queen Beatrix (aka “Bea” for insiders) reigned the country.