January – February 2020

March – May 2020

Arriving at home, in the best physical condition, it was a matter of returning to normal everyday life and incorporating the new fitness program. Unfortunately, the coronavirus worsened the situation to such an extent that quarantine became necessary for risk groups, to which I belong. This was recommended by my doctor a little earlier than the following recommendation at federal level. The coronavirus mainly attacks the lung function, which is a serious risk for my clinical picture. So the new fitness program had to wait until the situation allowed visiting the gym again. The existing therapies (Logo, Physio, Massage, Ergo) had to be discontinued, as well as the use of Assistants and Spitex on site. For Daniela this also meant working from home and for Melissa the consequence that she could neither visit the day care center, play group nor maintain any other contact with other children. We found ourselves under a kind of house arrest, with regular walks in the recreation area in close proximity. Thanks to the fact that the support I needed was still manageable, the burden on Daniela was limited. For this purpose, we had adjusted the scope / rhythm of care to the situation. To avoid unnecessary contact, we were able to cover our grocery with an Assistant once per week.

June - July 2020

Due to the relaxed regulations by the federal government, I was able to start again with ergo, physio and massage, in compliance with the hygiene regulations. All of our Assistants were also able to resume their regular assignments.

For March we had arranged an appointment 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.

I never thought that a visit to the hairdresser would be a highlight. But the quarantine due to Corona opened up completely new experiences, which made cutting hair almost liberating. But there were also more challenging situations, such as the development of the psyche, when Italian temperament, childlike energy and the urge to move and Swiss calm interacted in the same room for four months.

August 2020

September 2020

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.

After that, Melissa enjoyed another week of vacation in Interlaken with my sister and gave Daniela and me a few "quieter" days.

October 2020

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.

The year 2020 may go down in history books for Switzerland as a year of "workplace modernization", as the pandemic had given the home office and online video conferencing a major boost. With the increasing spread of Corona, the precautionary measures tightened increasingly and the planned ALS day in Nottwil had to be transferred into the age of technology and took place via video conference.

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.

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.

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.....

March 2021

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.

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.

April 2021

After my return I lived alone at home with Melissa. In addition to the regular work of the assistants, weekends and evenings also had to be covered. This was accomplished with the support of family, friends and assistants. Planning was a big challenge because we didn't have 24/7 support and this situation was a new experience. Would Melissa and I get along? Would the times when we are alone – sometimes for several hours – become a problem? Were the concerns that were partly expressed justified?

It became clear very quickly that Melissa and I made a good team. We quickly developed our processes and rituals together.

For example, our dinner was ready at 7 p.m. Melissa brushed her teeth while I freestyled her a toothbrushing song. Then we prepared the clothes together for the next day. Occasionally we philosophized about matching colors or items of clothing. It's amazing how girls of that age already know exactly what they want to wear and how to combine clothes - with a boy this would probably have been a matter of 2 minutes.

Afterwards she put on her pajamas and hopped into our bed. I had agreed with her that she could sleep with me while Daniela was away. We had different rituals before bed. We usually started with a short conversation about the previous day - sometimes mentioning three highlights - followed by one of the following options:

• told a bedtime story from me

• a bedtime story that we took turns taking shape together
• a question about something I then gave her a detailed explanation
• a bedtime song sung by me

During this time she also developed the wish that she could hold me in some way to help me fall asleep. With my limited options, it was an opportunity to give her my foot. Since my feet rarely had to squeeze into shoes and rarely had to do any hard work, it was an unproblematic solution - there was no risk of an “epidemic”.

During spring break I registered Melissa for children's sports week. On Wednesday she came home very excited and held out a piece of paper to me. “You definitely have to register me!” One of our trainers from BTV was part of the support team and introduced the children to the game of volleyball. The piece of paper was a registration form for the kids training in our club. My joy was at least as great, as I had secretly hoped that she would find volleyball, but I didn't want to pressure her into it.

In mid-April I visited Daniela in Rheinfelden. There was also a joint therapy discussion with the therapist there. That's why Melissa stayed home during this visit.

The end of April was gratifying for me in two ways. On the one hand, we were able to start volleyball training again with protective measures, and on the other hand, Melissa had her first volleyball training at BTV Aarau.

May 2021

I discovered a robot arm on the internet that is mounted on the electric wheelchair and can be controlled using the joystick. This was developed by a Canadian company. Luckily they had a representative in Germany. I contacted them to ask if a demonstration was possible. We were able to arrange an appointment for the beginning of May. I contacted the SAHB and the ALS Switzerland association to invite them to the demonstration at my home.

The SAHB was interested and sent two people to the demonstration. ALS Switzerland already knew about this and waived it. We were already waiting eagerly for the representative from Germany when the phone rang 15 minutes before the appointment and the representative had to cancel the appointment at short notice due to complications at customs.

The restrictions caused by Covid meant that the general meeting of BTV Aarau Volleyball had to take place online for the second time. I was honored to be honored for my 35 years as a member of the club.

At the end of the month, Daniela finished her hospital stay and decided to go to Pinarella (Italy) for a few more days, together with Melissa and her sister.

June 2021

June opened the summer season with temperatures of 30°C+ for the first time. Reason enough to enjoy the European Football Championship with the boys, BBQ and cold beer.

At a joint session with our couples therapist and Daniela's therapist in January, it became clear that there was still disagreement between the therapist and me. In my opinion, practical everyday life should also be taken into account - the “challenges” are in everyday life. This month initiated a deeper involvement of external professional support for Daniela's "challenges" as well as precautionary "support" for Melissa. 1 hour per week - not quite what I found to be effective. I don't want to go into this topic any further here, except that today (2023) I feel confirmed in my point of view. I may share this part of our family history and my experiences with mental health support at a later date.

July 2021

At the beginning of August it was time again for the half-yearly lung function test. I used a CPAP machine as an experiment. Since I didn't have sleep apnea without the device and my sleep quality was significantly worse with the device, I decided to return the device.

In mid-August, as in previous years, we took part in the ALS holiday week in Locarno. The weather was kind to us and gave us wonderful trips from Locarno to the Verzasca Valley.

The end of August was marked by “changes”. On the one hand, I was able to conduct initial interviews with new potential assistants, and on the other hand, I had a meeting with my new masseur. Last but not least, Melissa and I enjoyed our birthdays, where Melissa turned a year older and I turned a year wiser.

September 2021

This year's birthday for Melissa came with many subsequent surprises. She receives two turtles on loan from a Spitex employee. She had wanted this for a long time and now it was time for her to take on her first big responsibility. How long would it take before she lost interest?

To my dismay, the terrace was transformed into an enclosure with the help of the lounge. Not only was it no longer possible to use the lounge properly, but straw, lettuce leaves, tomatoes and other "things" were also mixed up inside the enclosure - a real challenge for my sense of order.

During the holidays, Melissa discovered pony riding, which she really enjoyed. That's why we surprised her with a children's birthday party at a pony farm. There was a round of pony riding for the children, with one half riding the pony and the others having to walk. On the way back I became a replacement pony for the children who could no longer walk. Afterwards there was snake bread and cervelat by the fire in the tepee tent.

The next day, Melissa was happy about the surprise visit from Locarno. Her babysitter from the ALS holidays was at the door and accompanied us to the nearby animal park followed by a city tour in Aarau.

On September 17th another ALS parallel meeting took place in Aarau. This time there were only two of us in the affected group. Since the other person could only communicate using a voice computer with eye control, the conversation was quite slow.

November - December 2021

Now the time had come, my body was bowing to earthly age for the first time: I needed reading glasses! and if that wasn't bad enough, it was another small step into dependency. The mobile was far enough away that I could still read the display. But for letters and newspapers there was no way around reading glasses. I also needed it in the restaurant to read the menu - a small death I had to die.

After a long search, I found a new, suitable assistant for full-time employment. It started on December 1st and the household and other small things returned to their routine. There was probably a small "discrepancy": she was a vegan and I am a carnivore, but that didn't affect our good cooperation.

We stayed with my sister for two days over Christmas and also had our family dinner with my parents there.

Afterwards, Daniela's sister and her children stayed with us for two days, which made Melissa incredibly happy. Daniela and Melissa accompanied their sister to their in-laws, went ice skating together and returned to Aarau in the evening.

On New Year's Eve, Melissa was able to get to know indoor climbing with Daniela and two players from the volleyball team. New Year's Eve was similar to the last. We wanted to enjoy a quiet and relaxing evening for the three of us.

January – March 2022

The new year begins right away with a meeting with the KESB (Child and Adult Protection Authority). There are more pleasant ways to start the year! The conversation goes well, and our counterpart makes a reasonable impression.

Melissa then enjoys a few days with her grandparents before kindergarten starts. The first school week isn’t even over when Daniela starts feeling unwell. Since COVID-19 is still an issue, she organizes a rapid test at home, which promptly comes back positive for her—mine is negative. Our family doctor is only four floors below, so we can all go down together. Because of her positive test, the examination takes place outside the practice. I hate those swabs!

Melissa’s and my tests are negative. So Daniela isolates in Melissa’s room and only moves around the house with an FFP2 mask.

Of course, it was only half as fun alone, but better than nothing. The good thing was, since Daniela wasn’t there, I could encourage Melissa to swing as high as she wanted. There were no restrictions on climbing either, but I always reminded her to move carefully. I had agreed with her from a young age that she could try anything as long as she was careful. For risky but not dangerous actions, I always gave her a heads-up that it could be dangerous. The decision “to do or not to do” was always hers.

I believe she has developed a very good sense of self-assessment, without being afraid to take a calculated risk.

The parent-teacher meeting with the kindergarten took place by mail, with the evaluation form in the mailbox and communication via email.

For safety, I had to go to the doctor again a few days later for another rapid test. This one was also negative. But now Melissa started having headaches, coughing, and even vomiting.

Two days later, Melissa felt better. Daniela’s quarantine ended, and we had another appointment at the doctor’s for testing. Daniela was negative, I was still negative, but now Melissa was positive. One quarantine ended, the next began—or rather, continued. But we solved Melissa’s quarantine in a child-friendly way. At home, she could move around as usual, and although I actually belong to a risk group, I had full confidence in my immune system, which has rarely let me down.

Again, two days later, I had to go for another rapid test. Boring—still negative. A planned dinner with friends was canceled for safety reasons.

On the last day of isolation, there was another round of rapid tests at the doctor’s. Negativity prevailed.

At the end of January, I organized a demonstration of the Jako robotic arm at my home. I had discovered it while browsing the internet and contacted the European branch in Germany. The new price is around 60’000 euros—definitely a shock. From ALS Switzerland, I learned that a used model from an older generation was available. Refurbishment and installation would cost about CHF 8’000, which is comparatively affordable.

Now it was time to make a decision. Emotionally, I thought, “Cool device!” As a technology enthusiast, I was excited. Rationally, I decided to write down all the situations over the next seven days where the arm would be helpful, then sleep on it.

The new price wasn’t worth it to me, especially since I’d have to pay privately. I thought long and hard about the used model.

Pros: I could drink independently, grab things, press buttons, scratch myself, and eat “by hand” myself.

Cons: The wheelchair would probably get wider, Melissa’s roughhousing and climbing would be restricted, and there was a risk of damage. The same risk applied to my activities outdoors or in the gym.

In the end, I decided against the used model. The costs for an older generation device felt uncomfortable, and the uncertainty of possible defects due to my activities reinforced my decision.

At the end of January, it was time for my quarterly check-up at Rehab Basel, but this time with a substitute because my specialist was absent. As expected, the progress measurements showed the usual slow development.

Afterwards, we took the opportunity to visit my uncle, who lives nearby. I hadn’t seen him and his wife in ages.

Two days later, we visited a couple whose wife also had ALS. Melissa was there and enjoyed playing with their dog.

We had two important topics: Daniela and I had a discussion—she wanted a dog, but I thought it would be an unnecessary burden for her right now. I can’t walk, and with children, it’s known that initial enthusiasm fades and you have to organize things yourself. The couple was supposed to show us what it’s really like… We didn’t get a dog.

The wife was my age, and they had a similar situation and division of roles. So we could exchange experiences. It was a very pleasant time, and we would meet again.

Later, Melissa didn’t feel well and lay down on the sofa. Shortly after, a familiar sound signaled that cleaning was needed. The next day was the start of the holidays, and Melissa was sick.

Melissa was lucky—her illness was brief. So she could still enjoy the holidays and participate in the after-school program in the second half of the week. The following week, she tried out her inline skates at a beginner’s course at Rolling Rock.

One morning, the electric wheelchair didn’t respond to the start button. But karma was kind to me: that morning, the new manual wheelchair was delivered, so I stayed mobile. The service technician for the electric wheelchair also had time that same day to fix the problem.

At the end of February, Melissa and I took a trip to the “Inseli”, a nearby piece of nature surrounded by the Aare river We brought a trailer with a picnic, which I could attach to the electric wheelchair. It was a long and entertaining outing, even though we didn’t unpack our picnic. But the traditional ice cream was a must, and Melissa was happy to steer the wheelchair for a while. On the way home, I stretched my legs and tilted the backrest a bit, so Melissa could lie comfortably and soon fell asleep. When we got home, something happened that many parents probably know: I woke her up, she was grumpy, and in that mood, she couldn’t detach the trailer from the elevator. On the contrary, it only made her mood worse. She took the key, told me to wait for Mom, and went upstairs to sleep. About 40 minutes later, Daniela came home… My only time so far when I felt helpless.

March was dominated by organizational matters. I had newly arranged for Spitex (home care services) to come three days a week. Luckily, because my assistant became ill and was out for almost two weeks. Since she was with us all week and all day, her absence was noticeable. She took care of the household and laundry, cooked, and helped me whenever I needed support.

For the upcoming hospital stay, I had to prepare a duty roster to ensure I was cared for in the evenings as well. I also asked my circle of friends via WhatsApp for support with night shifts and weekends. There were a few critical questions about whether it was realistic for me to be alone with Melissa during Daniela’s absence. However, I was able to dispel these doubts. It showed me, though, that my illness and my outward appearance often lead people to underestimate me and my independence.

The duty roster was set, and I was ready.

April 2022

Since December 2020, we had rented a studio nearby for Daniela, so she could retreat there when needed. These short breaks were good for her, but sometimes also brought feelings of loneliness. We decided to give up the studio, as it was not used enough.

We decided to go on vacation in Pinarella for 10 days again. My assistant accompanied us to relieve Daniela. For the first time, we decided to shower at the “Bagno” (beach facility), as the space was better than at home—and there was a coin-operated machine for hot water! It was a few quiet days, and even the return trip went smoothly through the Gotthard tunnel. We brought our assistant home, where she could enjoy coffee and cake with her parents. We had plenty of shells and sand in our luggage for Daniela’s and Melissa’s creative projects.

A week later, Daniela’s break in Rheinfelden began.

At the end of April, there was an ALS parallel meeting in Aarau. The weather was good, and I decided to go there alone in my wheelchair. This caused quite a stir—how could a “sick” ALS patient in a wheelchair travel that distance alone? Well, for me, it was nothing new; I sometimes went alone to physical therapie, massage, or volleyball training.

The next day, Melissa and I met friends and their child to visit Roggenhausen, our local animal park in Aarau. The children were fascinated by the pot-bellied pig and its many piglets. They wanted to feed the little ones, but the big pigs kept pushing them away to eat themselves. Melissa was really upset about that.

In the afternoon, we were surprised by a thunderstorm, and it poured down. We took shelter under the roof of the closed kiosk. Hoping it was just a heavy shower, we waited for the rain to subside. The kiosk was at the lowest point in the area, and the water started to pool, quickly reaching a depth of about 10 cm. For me in the electric wheelchair, it was a welcome wheel wash and completely harmless. For the others, it would have meant wet feet. Behind us was the entrance to the toilet, which now made sense with its high threshold. Our friend waited inside with her son, her husband fetched the car, and Melissa sat on my lap and waited with me outside. I had to calm and distract her a bit, as the dark mood with the thunderstorm and rising water probably triggered some “end of the world” feelings. I explained and showed her that I could drive around easily despite the water and that we wouldn’t be swept away or sink—with success.

When we got home, the children were excited about the adventure, and we adults enjoyed the homemade casserole.

Mai 2022

In May, it became clear that the support in my environment was working well. I was cooked for, or they supplemented my night watch.

Another Family Day with friends took us to Schongiland (Amusement Parc), where the children could let off steam. For lunch, we used one of the two barbecue spots, which was available thanks to the somewhat mixed weather. To finish, we had a delicious dinner at a restaurant specializing in Cordon Bleus.

We organized our season-end dinner with the volleyball team at Pizzeria Pulverturm. The team hadn’t yet internalized the issue of accessibility, so I was faced with three steps. In addition, our table was on the second level of the restaurant, which meant two more steps. Our Italian hosts said this was no problem – even though I pointed out that both the electric wheelchair and I are not exactly lightweight. They claimed to have strong men in the service and kitchen – no problem! Their faces later told a different story – no wonder, the electric wheelchair weighs 180 kg and I weigh 90 kg.

Getting to the toilet was also a little feat. The path led narrowly between the tables, and the power wheelchair had to be left at the entrance because it was too tight. Since there were also two tables nearby, the guests sat back-to-back with the wheelchair.

At the end of the month, Melissa visited Daniela in Rheinfelden, accompanied by HotA (Family Home Treatment).

June – August 2022

Over Pentecost, Melissa enjoyed a few days in Pinarella with Nonna and Nonno. I prepared the dining room with my assistant for the upcoming wall painting. To give Daniela a good start after her stay in the clinic, I thought about bringing some holiday atmosphere and relaxation into the living/dining room. I found an artist online who gave me a good offer to airbrush a picture over the entire wall area of the living/dining room. Photos from the holidays served as templates, as well as my own ideas, which I could discuss with him, and from which he made suggestions for the design.

It was incredibly exciting to see how the picture gradually took shape. After three days, it was finished. Then I could place all the new plants and palms in the apartment and on the terrace to round off the overall picture. In a few days, the hammock I ordered for the terrace would arrive.

Now that the Maienzug was coming up, I went with Melissa to the city on the weekend after her season-end tournament with BTV Aarau Volleyball to buy white shoes. I couldn’t believe it, but not a single shoe store in the city had white shoes in Melissa’s size in stock. So I had to swallow my pride and order shoes from Zalando.

The beginning of summer showed itself at its best, and Melissa and I regularly took advantage of it for small outings in the neighborhood or longer trips to the Aare River. Now and then, we were also at a friend’s family’s allotment garden with a paddling pool, or I went with Melissa to the public

swimming pool.

In the middle of the month, I visited Daniela together with her parents, and two days later, Melissa visited with her kindergarten teacher.

At the end of the month, a joint meeting with the clinic therapist was scheduled to discuss the discharge and the process afterwards. A few days earlier, I had briefly discussed the “coaching” agreed with Daniela with our couples therapist, and everything was ready at home for the reception.

But things turned out quite differently. Daniela told me that she had decided to separate.

That day, I felt a huge anger build up inside me, but not towards Daniela, rather towards the clinic therapist, who, in my opinion, handled the conversation very awkwardly/unprofessionally. Also towards all the other people who had therapeutically cared for Daniela up to that point, who, in my opinion, had not provided any practical (she is part of a family, mother, wife, and caregiving relative) support. With a lot of commitment, I had tried to create relief at home and, in conversations with the therapists, tried to bring in input and support suggestions. But with the therapists – except for the couples therapist – I didn’t really feel heard or taken seriously, and the wheelchair and my changed voice probably didn’t help either. But I don’t want to go into this topic further here. I have resolved – if I ever have time – to write a critical book about it.

Then things happened one after another, from one unpleasant situation to the next. The following day, we had a roundtable with her therapist, our couples therapist, and Melissa’s art therapist. The plan was to discuss the process after discharge and the start with the “coach.” The decision for the new direction led to a moment of silence, followed by disillusionment…

The next day, the SRF documentary was broadcast. A few days later, visiting Daniela again was on the agenda, together with a befriended couple and their children. The difficulty was not to tell them yet – Melissa didn’t know either – just like at the team dinner a few days later at my home.

On the last day of the month, Daniela was discharged, just in time for Melissa’s first Maienzug the next day.

Since the documentary aired, I/we have occasionally been approached about it on the street. The hardest thing for me was how to react when people said to me, “You have such a wonderful wife” or “You can count yourself lucky to have such a wife.”

In the following weeks, we gradually informed our circle. Since it was also the start of the summer holidays, Daniela went to Italy for a week with a friend and Melissa. Afterwards, I enrolled Melissa in a multi-sport kids camp and the following week in a camp with climbing, skateboarding, scooter, and trampoline. I took her there each morning with the wheelchair and picked her up in the late afternoon, and we did outings to the Aare River, Inseli, or the city.

Melissa spent the fourth week of the holidays with my sister and was able to get to know the mountains – and walk herself.

Finally, she went again with Daniela and the in-laws for a few days to Italy.

With the start of school in early August, Melissa already had her first volleyball tournaments and her first dance performance with the dance school.

September – December 2022

September was all about preparation and organization for the new situation. I had to interview and hire additional assistants and thus had additional administrative tasks to handle.

For Melissa, the month was more about adventure and visits. The highlights were probably the training weekend in Interlaken, a week in Italy with Daniela and her grandmother, and her first Bachfischet.

In October, I had my second quarterly check-up this year at Rehab Basel. The disease is progressing as expected, very slowly, but I got a new specialist. My previous specialist had to cut back for health reasons, unfortunately. She had supported us optimally.

At the beginning of November, we had a cozy dinner in a rustic restaurant, just the parents – the children stayed with their babysitters. Or did they? Melissa’s babysitter called because Melissa hadn’t come home and it was already dark outside. She had been at a friend’s in the afternoon and had forgotten to tell her mother that she had to be home by 6:00 p.m.

The next day, we had a couple of friends with their two children over for brunch. Melissa was very happy, and the children had a lot of fun. With great care, they undid all the tidying up from Saturday in the bedroom and office.

In mid-November, there was a surprise outing for Melissa, which I organized: an evening show at Circus Knie. Since there were no parking spaces nearby, I got out with Melissa and picked up the tickets while Daniela parked the car. The counter was too high for my wheelchair, so Melissa took over the talking and payment with the credit card under guidance, which made her very proud.

Our seats were right by the ring and next to the entrance for the performers. Melissa was absolutely thrilled.

A few days later, there was another surprise outing – but this time for me. I almost started a discussion. We parked at the Wankdorf Stadium, saying that the Sensorium (this was the planned family outing) must be somewhere around here. I was convinced it couldn’t be here. To avoid unnecessary tension, I went along with the “blind search” for the Sensorium. We entered the exhibition grounds and went into a building where a sign at the entrance said “Volleyball.” My first thought was a surprise visit to a match, which I quickly dismissed because neither the building nor the location fit a game. When the sign for the association meeting appeared, it slowly dawned on me. The only reason a “normal person” would attend this event is for the honoring of medal winners at national/international competitions or for the Prix Benevolley… I could quickly rule out the first, so logically the honorary award must be the reason for attending. This was then confirmed at registration.

Interestingly, Melissa played along perfectly with the whole charade.

I was very happy and, for the first time in a long while, felt nervous again, as I don’t like being in the spotlight or speaking in front of many people.

It was very interesting to get the latest information firsthand. For a brief moment, I felt like I used to at business or association meetings – a good feeling that I had almost missed a bit.

When it was time for the honors and I was introduced, I had to smile a little. For one thing, my slide showed that I was 67(!) years old – copy/paste has its pitfalls – and my first name was pronounced in the French way, which annoyed Melissa very much.

Melissa accompanied me to the front and couldn’t help but point out to the president how my first name is correctly pronounced. This, of course, caused additional smiles.

It was a very nice thank you for the many hours, I was able to contribute to the development of BTV Aarau Volley over all these years. I thank Giusi and the entire board for nominating me for this award from SwissVolley.

At the next training session, the women’s team surprised me afterwards with a small aperitif and congratulations for the Benevolley Award – they also knew about it in advance.

Shortly afterwards, I developed a persistent cough that left me barely able to speak and lasted almost until the end of the year. So I had to postpone an interview for a podcast and hold back during training and games.

There was still a lot going on until the end of the year. The second half of the year is always marked by club and team events, as well as championship games. With the assistant model and the increasing number of assistants, the administrative workload has increased. With the separation, this briefly increased even more.

Daniela had moved into her own apartment nearby, which certainly made things easier for Melissa. We agreed that Melissa would live with me. As soon as Daniela felt better, Melissa would spend one night and then two nights with her. We would then continue to expand this as circumstances allowed until it became a shared arrangement.

Since the KESB had already been involved beforehand by Daniela’s former employer, there were various meetings with the KESB, the therapists, and HotA (Family Home Treatment). After the hearing by the family court, there were no objections to our agreement, but a guardian was appointed for Melissa. These meetings to discuss the further process also took place before the end of the year.

So an eventful year came to an end.