- Conversion of shower to floor level
- Change from standard toilet to shower toilet
- Ramp to access the terrace
- Automation of the front door
- Environmental control for blinds, lights and doors
It was to be assumed that the benefits from my health insurance could increase. On the recommendation my doctor, I asked my health insurance company to provide a case manager, with the idea that any claims for benefits could be dealt with in a more targeted manner.
More often I had to resort my way of shaving to unconventional methods, as well as for hairdressing or brushing my teeth. For wet shaving, for example, I held the razor with both hands, my arms partially resting against my body, and then shaved with combinations of head and / or arm movements.
Since I wanted to be independent and my competitive spirit was still very strong, the whole thing didn't seem inconvenient to me, but a practical approach.
This was our second trip with the manual wheelchair in our luggage. Standing or short distances on foot were still possible, but the excursions in the parks could not be done without wheels.
At the beginning of the year I was asked by ALS Switzerland whether we would be interested in an interview for the cover story of the annual report of ALS Switzerland 2018. We agreed to this and there were two appointments in February. One for the interview and photos at home and another short appointment at a volleyball game to take a few photos in connection with our sporting commitment. We could look forward to some very exciting photos.
For March we had arranged an apointment for testing the new wheelchair. Due to the Corona Lockdown it could not take place. Now that the regulations have been relaxed, we have been able to do so. As the name indicates, this head control works on the basis of head movement. You wear glasses and get a display projected onto the lens that visualizes the control functions. As a helpful feature, photos can be taken with the glasses. The handling of the controls takes a bit of getting used to at the beginning, but it works surprisingly well.
We have therefore added the head control to the application for the new wheelchair. We submitted this application a week later after I had been able to test the new wheelchair model for a week.
The big day had come and Melissa was able to gain her first experiences in school. She was looking forward to her first day in kindergarden, which she was able to enjoy with a lot of joy and wonderful experiences.
Due to the situation with Corona, we could not take the big summer vacation in Pinarella - Italy for the first time. Since Corona had "calmed down" a bit, we decided to spend at least a long weekend in Pinarella. Daniela's mother accompanied us for support. The weather was mild and we could still enjoy the beach and the sea, as well as the beloved Piadina.
In the past 6 months, our social contact has been reduced to a minimum. The sport activities were also affected, which especially caused displeasure for me, because I lost not only a fun factor, but also a job. But in the meantime a certain normality had returned and our volleyball training had been able to be resumed. Our traditional training weekend in Interlaken had to be canceled for safety reasons, but we were able to compensate for it with a training weekend in Aarau. The beginning of the championship allowed me to have more involvation with the work as coach, working on video analysis and draw up statistics.
November 2020
Our first conversation with Donat Hofer about a documentary for Swiss television took place in mid-November. ALS Switzerland was contacted in advance to find out whether there were patients who would make themselves available for a broadcast. When ALS Switzerland asked, I expressed my interest.
A little later I was contacted by Mediafish (produces programs for SRF) to make an appointment for a telephone interview. The producer liked our story so much that he had the idea for a documentary that he wanted to offer Swiss television.
In a conversation with Donat, an initial roadmap was agreed, which would lead through a period of about half a year. The starting point would be the relationship between Daniela and me and how it develops with the diagnosis of ALS. Due to the unforeseeable restrictions caused by Corona, it was difficult to create a rough schedule for the days of shooting. Since both sides showed themselves to be relatively flexible and spontaneous, this should be able to be mastered.
Shortly afterwards the long-awaited release of my homepage could be announced. On November 17th, 2020 my homepage my-als-life.ch went online, together with the newly created Instagram account and a newly created Facebook page under the name of the homepage. I originally hoped that I would be able to activate this on my 50th birthday. Due to Corona and the associated four-month quarantine for us, the project was a little delayed.
I was very pleased that the website was very well received.
December 2020
At the beginning of December, the Disability Insurance clarified my request for a "wheelchair with height lift" by telephone. I explained how this was justified in the application, that an altitude lift makes the transfer much easier in various situations. This was accepted and the topic was closed for me ...
Two days later the new electric wheelchair arrived. The wheelchair was equipped as discussed. Now it was still about the fine adjustments and the needs-specific additions / adjustments, which were recorded in a pending list. At the next appointment, a week later, the first pendencies could be processed. Due to the corona-related influences in the workshop, a few points remained that had to be worked through in the new year.
I now have two electric wheelchairs at home for an indefinite period of time, because the environmental control has to be transferred thru another company. However, this work had to be postponed to the coming year due to Corona. This means that during this time I can neither operate the cell phone nor the blinds, the lights and the doors. I have installed an app on my PC, which allows me to operate my mobile.
With the receipt of the new electric wheelchair, the first day of shooting for the documentary was also realized. Some sequences of the handover of the wheelchair were recorded, as well as an interview with Daniela and me. Melissa had skillfully staged herself again and again, which did not bother due to everyone's spontaneity and, above all, couldn’t strain Simon's (cameraman) patience in any way.
During the previous ventures I was not able to take photos or films. At the same time, the action cam videos of skateboarders, mountain bikers and other “crazy people” on all types of means of transport on YouTube aroused a certain fascination in me, which led me to the idea that this must also be possible with an electric wheelchair! During the summer vacation in Italy, I raced with Melissa on my outstretched legs with a raised footrest at full throttle (only 10 km / h) across the pine forest over hill and dale. On excursions I “hiked” on impassable hiking trails or drove up over the meadows and slopes with Daniela, who secured the wheelchair against tipping backwards.
The proposal for documentation submitted by Donat was accepted by SRF and they opted for the “Reporter” format, with a broadcast duration of around 30 minutes. The situation with Corona has worsened again and led to the cancellation of the championship and training sessions for our team. The planned shooting time of our sporting activities had to be postponed indefinitely.
This year's Christmas party required unusual planning - why? Because of Corona, of course!
The visit to the in-laws this time was planned without an overnight stay. Daniela's sister, who lives with her family in Germany, did not know until shortly before Christmas Eve whether and under what conditions they could come over for Christmas this year. Germany had set up the rule that leaving and re-entering the country is possible within 24 hours without any consequences. Switzerland had decided that a maximum of 10 people, including children, could come together.
Usually we are four parties, with a total of 12 people, unplanned visits of neighbors are not taken into account. All of these conditions had to be coordinated.
The planning was actually well prepared, implementation was a different story due to surprises.
The current corona guidelines (maximum 5 people) meant that we celebrated New Year's Eve alone. In order to be able to enjoy an appropriate New Year's Eve meal, we, as lovers of raw fish, had ordered a nice large sushi platter.
The first fireworks went off at 9 p.m. and we decided to hand over the “remains” of last New Year's Eve to a flame. First a couple of sparklers, which Melissa first waved in the air with great enthusiasm, but then quickly lost interest. Her enthusiasm rose when Daniela lit little fire wheels and they rotated on the ground. The highlight at the end were four small volcanoes, which, from Melissa's point of view, spat their fire and sparks up high into the night sky.
After this exciting half hour, the first yawns crept into my two women. For both of them it was the first time that they snuggled into the blankets at 10 p.m. on New Year's Eve. As usual, this was far too early for me. Since it's hard to celebrate alone and I've seen all this typical new year movies countless times, I decided to spend my first New Year's Eve with a glass of Coke in front of the PC. This allowed me to spend my New Year's Eve without the need of assistance. In my right hand the PC mouse, on my left a big glass of my special cola-water mixture, with a straw - which not only served for drinking, but was also ideal for scratching - and in front of me two screens on which a film was shown on my right and my successes as Football Manager (soccer!) took shape in the game of the same name. This form of multitasking, sometimes supplemented with download work and other in the background, has always served me as “complex brain jogging” since I “retired”, in order to gain some closeness to the former work environment.