Bye Rosalien

Rosalien (my ex-Physiotherapist)

Today I said goodbye to Rosalien. Perhaps we’ll still meet eachother at Hydrotherapy but I can’t be sure. Rosalien was my favorite therapist in the RCA. She was the one that went “Nordic Walking” with me when I couldn’t lift my right arm, went cycling with me when I couldn’t cycle (I forgot to put my right foot down) and played badminton with me to make me run and jump without me noticing the pain.

She applied all kinds of techniques (e.g. massage) if my right arm, shoulder, hip, calf, leg and foot were hurting. But above all she considered me “her” patient. That felt so good, that personal touch. Thanks Rosalien for your listening to all my boring problems, for helping with the ‘politics’ in the RCA and thanks for being my favorite physiotherapist!

RCA doctor reports back

Hydrotherapy (Blue faced people didn't want to appear recognizable)

Today we met again with the medical director of the Revalidation Center Amsterdam. He went immediately (without delay) through his reports concerning me. I will now tell you what he told us concerning:

Psychotherapy: I will continue with his therapy but only if necessary. I need him less and less. The psychologist will reserve a weekly slot in his agenda for me that I may fill anytime. I plan to see him at least every month because I like to get feedback on how I (have to or want to) deal with topics like the end-phase, dying, euthanasia and donating my body to science.

Speech Therapy: I could tell him more than he could tell me. I knew already that my psychologist had urged the speech therapist for continuing with speech therapy (logo-therapy). My problem is that I fail to see wrongly spelled words and I can’t detect words that I omitted to write. After the explanation from my psychologist my speech therapist changed her report.

Writing Therapy: Also this time I had more up-to-date information for the medical director. I had given up writing therapy because the writing therapist ordered me to also write more frequently at home and I had to bring samples from before the surgery. They showed a remarkable and unexpected result: my handwriting now is better than before.

Physiotherapy: I wanted to continue with this and dr. Koppe (medical director of the Revalidation Center) agreed. So I may continue with Physiotherapy,  Hydrotherapy, Sports Therapy (fitness, badminton and table tennis) and riding a bi-cycle or tri-cycle.

All in all not a bad result! Thanks dr. Koppe!

Basketball Shoes

Last night our evening walk took us to the local supermarket and there we bought the last ingredients needed to survive today and the next two days. So no compulsory Saturday morning shopping today but instead a good opportunity to get basketball shoes. My wife Monling drove me the nearest sports shop, mostly friendly people but their goods are unpredictable in quality, supply and price. We finally left with a nice cap, some sweatshirts and socks. Because the salesperson kept repeating how nice the offer was.

While walking to the next shop I received a txt msg from my sister Marjolijn. She had obviously read on this weblog that I was looking for Basketball shoes and briefed me on shops, brands and types. My sis is a fountain of wisdom. So I looked up the address of the nearest sports shop she was talking about on the Internet (using my PDA) and off we went to the area around the Ajax Football Stadium. We found the best bright red basketball shoes (closing high around the ankle) but of course they were NOT in my size. Monling found however a good alternative: the blue Nike Air Flight basketball shoes you see in this picture! I hope that my Physiotherapist approves of this model. Dear ladies thanks a lot to both of you!

I would like to be able to watch TV and use my private and office computers from my sick bed while recovering at home. I get easily bored so I need plenty of things to do. I do not want to be surrounded by a lot of IT, just the most essential stuff. That prompted me this afternoon to spend some time on the Internet looking for either (1) a proper LCD monitor for my PC that also allows me to watch HD TV or (2) an HD TV that also has the capability of doubling as a PC monitor.

You probably know that I have a kind of impulsive purchasing style so I was very disappointed to learn that these were requirements that could not easily be met. Many different and clashing technical standards, problems with resolutions, cables and boards and when I thought I had figured it out I found that my PC’s do not even do HD TV or at least can’t transfer as they do not even support HDMI and PCI Express. I feel so stupid! Anybody out there with some clever ideas?

So why all these details? Just to let you know that today I feel splendid! I don’t think I have had so much energy in weeks. Leg is fine, I have had relatively little headaches today, my stomach is just a little sensitive but my right hand has fully recovered from seizure III.

Foot and Leg

I slept not so bad last night (I had to go to the toilet ‘only’ 5 times during the night), got up at 8:30am with a headache but had a pretty productive day today. I used to morning to chase a few people on the budget, I tried to understand the intricacies of more advanced Salesforce reporting (I failed) and prepare myself for Physiotherapy. My leg was pretty sore again so the Physiotherapist did his magic on my inner thigh and Tibia that rapidly felt better. It is annoying me though that the effect does not last and I wanted to know why that was.

Remember that on the 31st of March the Physiotherapist discovered that I’m unable to control the horizontal position of my foot (in a plane passing through the standing body parallel to the floor). That is not the only problem. For some reason my foot does not want to stay flat on the floor. He explained that this has to do with a combination of different muscles and tendons (Peroneous Longes, Peroneous Brevis) that run down from the knee all the way through the right side of my right leg to my foot and the Tibialis Anterior that runs through the front of the leg. Then there are several other smaller muscles for my toes that are also involved. It is very complex. I’m however convinced that I should do something to reduce the need for physiotherapy all the time. I have an alternative for the hiking shoes: basketball shoes and I’m going to get them this weekend so I can practice a few times in the gym with my Physiotherapist.

In the afternoon a friend came by with an excellent CD (“The space between us” by Craig Armstrong), just the music I like (thanks Marcus!). He feels it is music suitable for a movie and I believe he right about that. As a matter of fact when I checked Google I found this link about Craig Armstrong that proves that he is not only a composer but also writes music for movies. I couldn’t prove that “The space between us” is movie also music. Anybody out there who can confirm that? 

A package with a beautiful Italian tie was delivered today. I was from a colleague who lives in the area of Brussels and his wife. I used to work for a while in Brussels and it was a great time. Life in Belgium is completely different from living in the Netherlands. They are a bit more formal I think but they have such a great culture. Last week the city of Antwerpen was introduced on TV (I believe that it is the second city of Belgium, right after Brussels). There are so many lovely and special restaurants there. We will have visitors over from Italy next week, I think we will take them to Restaurant Lieve (the only real Belgian restaurant in Amsterdam). I’m getting hungry again! Magda and Hendrik, thanks so much for the tie. A very special gift very appreciated!.

Tendons and Muscles: Shoes!

As I announced this morning: a busy day. And I even have been doing some work for the company, believe it or not. Time for a positive note from the Physiotherapist. During last week Friday’s treatment he concentrated on the front of my lower right leg but the more “South” he goes the less my complaints start to have any bearing with existing tendons and muscles. The complaints have become a complex mixture between what is physically there and what is neurologically missing (are you still with me?). A dialogue is required between us where I tell him exactly what problem I have and he, using trial and error, tries to mitigate the pain.

He gave me some exercises last week to improve my sense of coordination of my right foot (forgive me if this is Foreign Johny English). One is the exercise that I described before (25th of March 2008) but a new one was to use the heel (easier) or my toes (difficult) to write letters on a smooth floor. I tried these exercises at home with the result that this morning I had a very sore leg from the right knee cap downwards until the right side of my lower shin (Tibia).

To resolve this he started with a short massage of my right thigh and he then proceeded to massage my shin. Wonderful! I could almost feel the muscles relax. Finally I worked the home trainer for 10 minutes. The result is great as I can now lift my upper legg until it has a horizontal position, have a reasonably relaxed shin and were able to keep my foot straight on the home trainer. This weekend we (Monling and I) want to try to take our bikes around the Sloterplas (a rather nice lake in front of our house), also to loose some calories in the process.

The Physiotherapist discovered that I’m unable to control the horizontal position of my foot (in a plane passing through the standing body parallel to the floor). He suggested to wear high(er) shoes like light weight hiking shoes.

Priority

This morning, as agreed, the Neuro-Oncology Nurse called me to inform me that the Neuro-Surgeon was called away for emergency surgery in another hospital and that therefore no meeting had taken place. She confirmed that I was on the list of cases to be discussed tomorrow.

I informed her about what happened last Friday (Seizure II) and we discussed this. She seemed considerably concerned about the increase of Keppra and even more about the Dexamethasone. I also told her about my right arm, the fact that my leg had become a bit better and speech had not improved. I also told her that according to the First Aid Neurologist there was a chance that my Glioma had turned into a (partial) grade 3. She didn’t react to that but told me she was quite sure that my priority was going to go up significantly tomorrow.

My wife just came back from the pharmacy and she told me that it took them a long time to help her. They warned her about the effect of Dexamethasone and Naproxen on my stomach, despite the use of Pantoprazol. We had already decided that Dexamethasone and Naproxen was too much and as Dexamethasone seems to work against Rheumatism as well we stopped with the Naproxen. This confirms that we did the right thing. By the way: they don’t sell Dexamethasone in tablets larger than 1.5mg and according to the patient information leaflet a dose of 8mg per day is for serious cases. Nice. I hope that the hospital knows what it is doing.

My new physiotherapist is much more gentle but as the leg seems to have improved he didn’t need to have to be rough. After about 15 minutes of massage I did 10 minutes on a home trainer (that went well) and the last few minutes with my right foot on the seat of a rowing simulator. I’ll try to make a picture for you, it is impossible to explain. The exercise is complex as it is forcing me to make a combination of moves that are hardly possible in my case. Still I believe that I should try. Conscious movement may replace unconscious movement. Remind me of that picture!

Neurology or Rheumatology?

Over the last few weeks the pain in my lower back and legs has become worse, especially in my right knee. When I have to get up in the morning is it very hard to get out of bed. My right foot doesn’t want to co-operate and I’m unable to swing my leg out of bed. The same thing happens in the evening: my leg simply doesn’t want to go to bed. I have to perform a complex roll to make that happen. During the day it is easier to manipulate my leg although getting in and out the car is not that easy. I have to pull on my jeans to support the muscles of my leg.

I’m sure that my rheumatism has something to with it but I’m equally sure that my brain tumor is at least partially causing this. I have however no clue in which way the tumor and rheumatism interact. I’m currently taking 15mg MTX a week, folic acid and a daily dose of Arcoxia against the pain (not sufficient).

So today I went to see my Rheumatologist. It seems that my problem is neither related to the rheumatism nor to the neurological effects of the tumor. According to him my tendons and muscles in my leg and lower back are strain. Perhaps because I have started to walk in a different way because of the loss of right motor function, perhaps because I have worked out in the gym too much without taking this into account. He prescribed a different medication (1000mg Naproxen a day) and referred me to a Physiotherapist. I hope that there is still enough time left for the Physiotherapist to help me.