Note:
In this chronology I limit myself to the factual content of the processes. A detailed description will be found in the book which is planned. Curious?

January 2021

Right from the start, it was important to me to remain as independent as possible and for as long as possible. As a technology enthusiast, I have always kept an eye on the possible assistance in this area. Since I continued to work for almost 4½ years after the diagnosis, the focus was on office work, which could also be projected onto home needs.

Due to Covid-19, I was “forced” to spend significantly more time in my own four walls in 2020 and early 2021 than I would have liked. This led to more interaction with the apartment, such as TV, radio, light etc. and also showed the hurdles and limits of independence. Since the ordered lockdown and therefore related bottlenecks crossed the services with the change to my new electric wheelchair, this could not be processed or completed as desired. Therefore I've been separated from cell phone operation and thus from the previously available environmental control for almost two months now - which feels like an eternity. A change in this situation is not yet in sight and the only possibility of "free movement" is the use of the PC, otherwise it is similar to the joy of movement of a whale on land.

Since keeping my feet still and doing nothing are not my strongest qualities, I began to deal with the topic of a smart home and, as expected, found many possibilities that opened new doors to my illness-related restrictions. For a brief moment, fascination and zest for action took over the wheel and I had almost built “my house of the future” in my mind when I put my feet back on the ground or my buttocks on the chair and with an eye on the budget and conditions planed the feasible options.

image-placeholder.png

February 2021

The new month had barely dawned when we had to investigate a suspected corona in our four walls. Coming home from kindergarten, Melissa started with a cough, which then made its way to Daniela until the weekend with an additional sore throat and caught up with me a few days later. The typical virus carousel in a family with a child.

Since another filming day with Donat (Mediafish / SRF) was just around the corner, Daniela went four floors down to the doctor to undergo a corona test. As expected, the result was negative - that is, positive!

This day of filming was the first that also included filming locations outside of our living room. After interview recordings, after which my voice weakened and my cough began to rise, I went to visit the hairdresser. In order to capture the scenes optimally, it was necessary to repeat individual elements such as getting in and out of the car two or three times.

Now the time had come that my cough and with it the flu virus had caught up with me and I had to have an unpleasant cotton swab inserted into my nose. At least this unpleasant situation could be concluded with a negative test result.

Only a few days later I received my Covid 19 vaccination appointments, the first at the end of the month and the second a month later.


In a first appointment, Active Communication was able to switch part of the environmental control from the old to the new wheelchair. My cell phone could now be controlled again via the electric wheelchair. This was a perfect fit for the end of my first stage of smart home setup. Fortunately, I discovered a bargain offer for the Google Mini (a smart loudspeaker, controllable by voice command) and I grabbed four of them for the living room, office, parents' room and children's room. You can use this to answer all your questions, as you know from Google on the PC. Furthermore, I linked my Spotify and my TuneIn account and thus have access to music or news in all rooms. I also replaced the lightbulbs in the office, hallway and dining room with Philipps Hue, with which I can also bring them into the right mood light via Google using voice commands.

In the beginning, Melissa enjoyed letting Google tell her jokes or translating “indecent” words into languages ​​like Russian or Japanese. In the meantime she is the mistress of the choice of music, since Google obeys her commands better than mine. In principle, this would not be a problem because we always find common music, but unfortunately the proportion of children’s music is still predominant...

Now that spring had slowly announced itself (today I know better), I started a first try with the new GoPro camera and how it could be used on a wheelchair.

March 2021

Another day of shooting could be tackled. This under the theme of "a completely normal day".

This started early in the morning in bed and how I pulled myself up, with my feet hooked in the wheelchair, to sit on the edge of the bed. This was followed by morning care, whereby the circumstance - showering (suitable for young people), camera and new people - was discussed with each other in advance. I was now able to understand the feeling that actors have in their first shower scene or something similar. Rather uncomfortable at the beginning. With the professional, but also humorous nature of everyone present, the camera was soon "forgotten".

Freshly styled, we went on one of our walks, which was accompanied by the camera. Daniela and Melissa were out on their bikes, Donat and Simon were on nimble feet, armed with a camera, tripod and bag. Anyone who has already been driving on gravel and field paths with a five-year-old child can probably imagine the entertainment value of the next 60 minutes for parents. In order to activate Melissa's last “motivation reserves”, we headed for the playground at the end. Melissa had to be "carried" by me for the last few meters and our companions helped the children's bike to reach the playground. The slight “wetness” in Melissa's face immediately gave way, once the playground was in sight.
​​​​​​​

During this shooting it became apparent, what a cameraman's creative and trained eye can capture, shown in a “special” scene he filmed. I am curious to see who will recognize the “special”! 

  • The flags in the background show from left to right the Swiss flag (I am swiss), the flag of the canton (state) Aargau where we live and the Italian flag (Daniela is Italian).


image-11236187-Rehab0-d3d94.w640.jpg
image-11236211-Rehab_Station_5-c9f0f.jpg
The day had come when the entry into REHAB Basel was imminent. For the next four weeks I would be able to pursue my daily therapies there, with full board.
The first challenge was to be overcome when loading the car. In addition to the wheelchairs and the suitcase, I also had to stow my office chair and the entire electronics park in the car. Fortunately, my colleague who drove me also grew up in the 80s, because mastering Tetris turned out to be a clear advantage for this.
As always, entry turned out to be very straightforward and everything was already prepared. On my last stay, chance gave me the same room as my first stay three years earlier. The third stay this year assigned me a new room with the “wonderful” view of the neighboring building and its offices. This year too, coincidence couldn't be long in coming and I actually had the same room neighbors as I did when I first stayed four years ago. This combination couldn't be better, because even then we had similar bedtimes and a lot of fun. The sigh of relief was great on both sides, because in a two-bed room, a suitable room neighbor is one of the most important factors for a good and relaxed stay over several weeks.
The staff at Station 5 had seen a few changes in the meantime, but the good mood and good work remained. I think you can say that we became the favorite room within a very short time. Our uncomplicated, happy and sometimes crazy nature left no room for negative vibrations. This probably also led to the fact that we advanced to the «training room» for the nursing assistants (students, prospective physio etc.).
The main feature of our room was lots of music and light until midnight. Since the effort to get me to bed is still very small - getting up with little support, lying in bed and covering me - I was given permission to discuss the bedtime with the night watch.

In the past I enjoyed good food here and this was the case again this year. There was a menu card with a small selection and with the addition of a ++ I received a slightly larger portion. Of course, I couldn't miss this opportunity. Although my roommate had previously skipped dessert at lunch, it came back on the order form from my second week on. In the sense of a common room organization, this extra portion of energy could be supplied to my increased needs in order to be able to do the daily work with the physiotherapist, in the weight room and on the bike. Of course, the pleasurable side of my existence also got its bright moment.

The focus of this year's stay was not, as it seemed up to now, on a wellness stay, but on maintaining and optimizing mobility.
In the weight room I was able to mobilize the leg and core muscles in a targeted and controlled manner. Of course, my head still knew exactly what weights I had lifted the year before and wanted to start right there. Not a good idea when you consider that the corona year did not allow any training in between. This corresponded to the idea of ​​my Therapist, and I started at level 30 instead of 70. After the first set of 20 repetitions, I increased to level 35 for the remaining two sets. Inwardly I thought, come on there is more, but the sore muscles in the following days taught me better.

I was able to start the exercises for the core muscles surprisingly well at level 100, like a year ago, and also complete three sets without any problems.
After the first training session, my legs were sore, and my body felt the unfamiliar intensity of training. On Friday afternoon I wanted to use the short break before the last training session of the week in the weight room with a short break on the bed and within a few minutes I had already arrived in the land of dreams. So, my first weekend started two hours earlier.

In the following three weeks my body had adjusted to the new rhythm and the exercise felt good and the sore muscles were no longer an issue.

In the physio we decided to focus on two areas. On one hand, the stabilization of the core muscles in the form of “sitting without a backrest” and on the other hand, walking training.
During walking training, we had to find out whether it was possible to walk in an upright position and which aids could support this. There was a special high table on castors, where I could put my arms at a comfortable height in order to reduce the strain on the back muscles. This worked more or less well, and we gave it a try with a rollator that had an armrest. This rolled much more easily than the high table and therefore offered me significantly less stability. As soon as my body weight began to shift in one direction, the rollator rolled away so quickly that I could no longer hold myself.
Thus, the topic of the rollator was canceled. In addition, I objected that I could not take any help in everyday life due to the lack of strength in my arms and hands. Also, it had been shown that my body had created a “new balance”. In my new normal stooped posture, I had a good and controlled balance, standing and moving. In the upright position I had the feeling that I was tipping backwards.

The walking training consisted of finding out how far I can walk independently and to what extent a second and third round is possible shortly afterwards.
In the first round, I was able to walk a distance of 12 meters on my own, secured by the Therapist. After a short break, I tackled the second round, in which I still completed 8 meters without any problems. After another short break, it went into the third round, in which 5 meters were possible without any problems.
The limitations do not come from the strength of the legs, but from the strength of the back muscles. With increasing exertion, the muscle tension spreads over the whole body, which makes walking noticeably more difficult. As a little help, I was put on a medical body bandage (a kind of corset), which supports the core muscles a little.

In order to do something good for my legs, I sat down on the bike trainer and covered about 10 kilometers in about 40 minutes.

With occupational therapy, we practiced driving with the head control in three units. The first unit was about getting to know the peculiarities and how to use them. In the second we moved around the building to get to know the situation with obstacles and tight spaces. In the third, we were outside and practiced crossing a street and the associated pitfalls of the threshold / ramp, which can cause uncontrolled head movement, with the corresponding reaction of the control. Looking to the left and right before crossing the road must also be practiced, because if the head is tilted sideways, the control system wants to drive a corresponding curve.
The head control has proven to be a practical tool - provided the neck muscles have enough strength - with which one can find one's way very quickly in open terrain. As soon as there are obstacles, distractions or stressful situations, it turns out that you stand in the reeds very quickly without routine - in the truest sense of the word.

The four weeks at REHAB went by in a flash, which is definitely thanks to the perfect roommate and a great team of nurses and Therapists.