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 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!

The doctor in training


The doctor in training

Doctors in training exist in all shapes and sizes. Tall, short, slim, fat, nice, arrogant, submissive: these are but a few of the qualities they posess. Normal people like you and me.

I notice after a couple of days in the medium care ward, that communication is not optimal.

It seems as if patients, nurses, secretaries and doctors in training are all coming from a different planet. Like today. A white coat enters the ward in a hurry. He walks straight past a nurse, towards the bed of a patient. He shouts something to the patient and vanishes into thin air afterwards. Silence.

The patient calls the nurse. “Who was that doctor?” “I don’t know” says the nurse “He didn’t introduce himself”.”What did he say exactly?’ “I couldn’t hear it properly” says the nurse. “Do I have to do something?” asks the patient. “I will ask for you” says the nurse. I almost fall out of my bed because I am ever so surprised.
During a quiet moment I ask the nurse if this happens regularly. “Unfortunately yes” says the nurse. I tell her that I am surprised because all communication has to be done over again.   She has to ask an unknown doctor about an unknown message and has to communicate it back to the patient. A waste of time, and an increased chance to make mistakes. “Well, it is a big organization” she says, and doesn’t seem to mind.

The size of the organization seems to be the root cause of almost everything, according to the staff. The wrong GP in your file? A misspelling of your name? Data missing? Medication given at the wrong moment? Everything is to blame to The Large Organization. Which is -of course- convenient, but utter nonsense. More about that in another blog.

Another doctor walks straight to my bed. “We have to make an echo of your heart” he says. “And you are lucky, because we have a time slot free this afternoon”.

“How does it work, getting an echo?” “Well, we just make an echo of your heart” he says. “Nothing to worry about”. He is constantly shifting his weight from one leg to the other. I suspect there is more to this procedure than he is willing to tell me.  “So you mean it is just like an echo of my bladder? With gel on my stomach?” “No, we place a camera in a tube and enter that in your body via your mouth and throat.” Aha. Just an echo. “And do  you put me to sleep during the procedure?” “You will be locally sedated” smiles the doctor. “But I want to be put to sleep” I tell him. I have been told by others this procedure is uncomfortable and scary. I am done with this guy and tell him that I don’t want to be conscious during this procedure. “But we cannot do that this afternoon. There is nothing to worry about.” I ask him when he had his heart echo taken. He hasn’t. Point taken. I tell him that I WON’T get the echo this afternoon and want an appointment for sedation during the procedure.

In the brochure for patients (which I found on the internet myself, it was not offered to me before) it says:

“The echo’s will be made the usual way”. A very interesting form of informing the patient. Nothing about tubes in throats and and the option to get sedation. It seems like a Secret of the State.

“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.”