How is your mom?


One of the most hated questions by my daughters. They want to be recognized for who they are, and not be seen as “the kid with the mother in a wheelchair”.

So take that into consideration when you address a familymember of a handicapped person. The biggest mistakes to make are when you are saying: “I wish I could take over the handicap of your mother”. That may give you a fuzzy feeling, but we know it isn’t possible and it makes my daughters angry.

Another one is to assume I cannot do anything and I am not right in the head. Yes, I have a handicap, but I am still me. I love cruel jokes, I can talk, laugh, cry and cuddle, and I am still  me. So when you talk about me as “the woman in her little cart” it is demeaning and disrespectful. Most importantly it is hurtful to my kids. I can still crush your toes with my little card or blatantly say something inappropriate to have my little revenge. But do not hurt my kids!

Do not attribute my kid’s life’s choices to my handicap. They are smart young women who are inventing their life, partly based on the experiences with my handicap but mostly because they have unique talents and want to find their own way in the world.

I hope this column has made you think. I know most things are said well meant but sometimes they hurt others deeply. We don’t need more hurtful feelings. Thanks for your consideration.



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

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.