Family despite ALS

The topic of family planning was taken up at an early stage with the diagnosis of ALS.

We had only just met in September 2011. Daniela finished her studies in Lausanne and got a job at KAPO Aargau (State Police). In order to get to know people in the new environment, she decided to join an sports club. Since she had played volleyball before her studies, it was obvious that she look into our club BTV Aarau Volleyball.

I had been working as a trainer with BTV Aarau since 1991 and at that time I was coaching the team, which Daniela joined. By spring 2013, the friendship developed into a relationship.

2013   In spring of 2013, I managed to get a doctor's appointment. At the end of 2012, I developed occasionally a feeling of numbness in my left hand for a short time and this repeated itself more and more and finally forced me to stop training.

The following examinations resulted in the first diagnosis of "probably ALS" in October 2013. The changes to be expected from this indicated a massive turning point for our future together.

Daniela is 16 years younger and was 27 years old at the time. We were only at the beginning of our relationship and a difficult path was emerging, not only for me, but also for Daniela as a partner. So it was immediately clear to me, that I wanted to offer her an opportunity to leave the relationship. It didn't seem right to claim any expectations.

We had a conversation in which we looked at the situation and possible developments. Here I also gave her the option to leave the relationship without having to feel any guilt. She shouldn't be spending her young life taking care off a seriously ill partner and going through a painful experience in the middle of her life.

I was very surprised when Daniela decided to take the path together, without any hesitation. It filled me with a lot of joy. However, I let her know that she may change her decision without hesitation in the coming weeks.

We knew from our doctor that this disease has a linear course and that after a year of medical supervision you have an approximate reference point about the expected time horizon. In the course of this year we also had conversations about getting married and the meaningfulness of having a child. There was nothing to say against getting married, so the further discussions focused on the topic of having a child. We also asked my doctor whether there was any experience from other families. As far as she knew, our situation was unique. But there were other patients who already had children. She had not received any negative feedback from any of these families. She explained to us, that the experience has also been made from other drastic life situations, that children who grow up in such circumstances from an early age do not perceive this situation as either unnatural or stressful.

The most challenging topic for us was, how would a child deal with the potential early loss of a parent. We could not really answer this conclusively, but due to the one-year reference time, the prospects for 5 years and more, were very likely. My personal assessment, from a purely technical nature, led me to believe that 10 years can be quite realistic. We were convinced that our social environment would offer the necessary support and our parents lived in the vicinity. That year I also took part in an ALS study in Sweden, from which we received the information as to whether I had the hereditary variant or not. After it turned out that I did not have a hereditary variant, the decision was made to have a child.

2014   We planned our wedding for September 2014. We agreed to only marry in a civil ceremony, as a church wedding has no deeper spiritual meaning for both of us. We wanted to use our financial possibilities to the full for an extended honeymoon and experience one or the other desired destination together and without illness-related restrictions. Our 10-week trip took us to Singapore, visiting relatives in the Philippines, walking on the Great Wall of China, eating sushi in Japan, an adventurous round trip in Thailand, visiting good friends in Australia, and finally on a cruise in the Caribbean. With the desire to have a child in the back of our minds, we decided that pregnancy could only occur from Thailand in order to not make our trip unnecessarily difficult. In Australia, Daniela felt the need for a pregnancy test, which then turned out positive. 

As it turned out afterwards at the gynecologist, we had implemented our planning perfectly, because Melissa is a Thailand child.

2015   The pregnancy went relatively smoothly, except for the hot summer, that gave Daniela a hard time every now and then.

Thursday evening, August 27, 2015, I had just finished training and was still with the team for a drink in the garden restaurant, when the phone rang and it was time to go to the hospital.

We arrived at around 11 p.m. and already at 3:23 a.m., the day before my birthday, I was able to take my best birthday present in my arms.

Melissa was a lively child from the start and kept us busy at times. Since the course of my illness was very slow, I was able to take Melissa in my arms at the beginning, carry her around in the Babybjörn or play with her on the floor. The onset of weakness in my left hand and fingers meant, that I couldn't hold Melissa still while changing diapers and put the diaper on at the same time. So there was a clear assignment of tasks: I played the clown to distract Melissa while Daniela changed the diapers.

2016   In the first two years we were able to set up a good work schedule so that Daniela could find enough rest and bedtime, despite my work-related absence and progressive restrictions. For example, we used our large nursing pillow as a rest for my arms so that I could give Melissa the bottle or hold her in my arms despite the lack of strength. After dinner, Melissa was breast-fed again and I then carried her in the Babybjörn until midnight. This gave Daniela a four-hour sleep break. Then I could go to bed and go to work the next day.

This worked very well and the fact that we got Melissa used to a more or less fixed eating rhythm right from the start, made it possible for us to have a more relaxed day and night routine, with predictable rest times.

2017   At the end of September 2017, my mobility came to the first major restriction when I returned my driver's license. At the end of March of the following year, my working life came to a definite end and my retirement began. What I couldn't imagine years ago turned out to be a "stroke of luck" in retrospect. I don't know anyone who was lucky enough to be able to spend this much time with their child and be so actively involved in their development.

When we received the diagnosis, our doctor advised us to implement all of our plans as soon as possible. That is why we decided, according to our possibilities, to go on one or two large trips per year. With the birth of Melissa, we adjusted our travel activities because we wanted Melissa with us as much as possible.

For two planned cruises, we were able to take Melissa on vacation with my sister and my in-laws. At the age of 20 months we dared our first flight with Melissa, which took us to Indonesia. Since I already needed a little more support, Daniela's sister accompanied us to relieve us with Melissa.

Since this long flight with Melissa went without a hitch, we decided to visit her second godmother in Australia at the end of 2017. The first part of the trip, the three of us were traveling by car in the Perth area. Then we flew to Sydney to celebrate Christmas and New Years with our good friends.

2018   The following year we knew that Melissa had inherited the travel bug from us. This year's vacation first took us on a four-week road trip through California including a hand wheelchair in our luggage. One of our Assistants accompanied us to support us.

For Melissa's third birthday we were on a Mediterranean cruise with Daniela's sister and her family.

2019   In 2019 we spent our holidays in Cyprus, with the electric wheelchair in our luggage for the first time. The transport went almost smoothly and the relief for Daniela on site, not having to push a manual wheelchair, was clearly noticeable. This time my mother-in-law was there to keep Melissa's zest for action in check.

2020   Our last trip for the time being brought us to the Philippines first in early 2020 to visit my relatives. It was important to me, that I could introduce Melissa to her relatives. We were also supported by an Assistant on this trip.

Afterwards Daniela, Melissa and I flew to Thailand to enjoy a beach holiday together before we got home and were banned from the coronavirus in quarantine.

Since 2017 we have become aware that an Assistant is necessary to ensure relaxed travel. With implementation of the Assistance model, we had to learn that Assistants often represent an extended family member. Needing support when traveling, brought us to a new dimension, because on one hand we are together with a Assistant around the clock and on the other hand we have to bear the travel expenses for the Assistants.

Luckily we had done this trip to Asia with Melissa, because in the next few weeks and months our life, like that of many others on the planet, was shaped by the specter of SARS Covid 19.

For us, this meant 3-4 months of quarantine or isolation. The support provided by the care givers was limited to shopping and working via video conference. For Daniela and Melissa in particular, it was a drastic situation not being able to maintain contact with friends and family only via telephone and video.

Ever since Melissa discovered her mobility, she knew how to use it extensively. It's nice for us to have an active child, but it also means a certain challenge for us parents. This task became increasingly exhausting for Daniela. The quarantine exacerbated the situation and minor tensions that were there before were piling up and building. This also resulted in increasing tensions between Daniela and me.

This year's summer 2020 showed its good side here in Switzerland. Despite Corona - now declared a pandemic - we were able to enjoy the local sun and warmth as a threesome, because the long summer holidays in Italy could not start.

The first big milestone came for Melissa. When school started, after the summer holidays, it was time for Melissa to integrate into the school system by attending the “small” kindergarten. She went the first day full of pride and the joy of kindergarten did not diminish.

A positive highlight reached us in November. We were asked by SRF if we would be interested in taking part in a report that shows the disease and our family in a positive environment. After a conversation, which showed the details of the report, we agreed to the project.

In the same month, a personal highlight was added. My homepage went online.

2020 was coming to an end and was and still is very much shaped by Corona. Despite some loosening in between, it was a challenging year for us as a family.

It was something special for me, as the the restrictions of the pandemic pushed my circumstances with the illness into the background and were less present. Many activities could not be implemented due to Corona.

2021   The new year started with new projects. I have dedicated myself to the topic of Smart Home to give me additional independence as long as the voice is still understandable enough. This enabled me to use the Google Assistant to control the light in various rooms, make limited calls, and listen to music and the radio.

Melissa expanded her athletic activities by attending gymnastics and polysports.

As is often the case in families with children in winter, a small virus that has been introduced spreads quickly within the family. In principle, this is not so tragic, but with the current situation, the Corona warning bells are ringing. But this time all was clear and the test results were negative.

The shooting of the “Reporter” begins with great excitement. Due to Corona, some things have to be rearranged due to restrictions, which is why the focus is on outdoor activities.

The new electric wheelchair is also gradually being made fully operational.

There has been a change among the assistant, which means that the rounds of job interviews are starting again.

At the end of the first quarter 2021, Daniela will begin an 8-12 week hospital stay to recover and recharge. At the same time, the 4-week stay at REHAB Basel starts for me and Melissa can stay with friends during this time.

When I return home, the two of us - me and Melissa - live alone at home, with the support of family, assistants and friends. The planning represents a first challenge and the outcome was uncertain due to a lack of experience. Would Melissa and I get along since we didn't have 24/7 care? But we turned out to be a good team and my possibilities were still greater than many expected.

Due to Corona, the volleyball championship was suspended and training was not allowed. At the end of April, the restrictions were relaxed and training could be resumed, provided the protective measures were in place. In this context, Melissa also started volleyball training at BTV.

At the end of May Daniela came back from her time off and enjoyed a few days in Italy together with her sister and Melissa.

With increasingly pleasant weather and the onset of summer, we as a family also undertook one or the other trip with bikes and electric wheelchair. This summer we could start our holidays in Italy again after the obligatory rapid corona test has been carried out and turned out negative. Even after returning from Italy, further excursions and holidays within Switzerland followed. In this way, the trips and vacations missed due to Corona could be at least partially compensated for or made up for.

As autumn 2021 is just around the corner, the communication part of the new electric wheelchair could "finally" be completed. This year was also dominated by the topic of Corona and delivery bottlenecks and backlogged work during the lockdown were noticeable in many areas.

Thank God the volleyball championship was able to start as planned, but with the observance of various precautionary measures. We did very well in the preliminary round and remained undefeated until the Christmas break.

The possibility of visiting restaurants under more or less normal circumstances also motivated us to take advantage of this.

This meant that one or the other small activity could still be enjoyed until the end of the year, even if the protective masks were a mandatory accompaniment here and there. The Christmas visit from Daniela's sister from Germany could also take place this year without any specifications, which made everyone happy.

All in all, 2021 was a year without much activity. On the one hand, the safety requirements due to Corona had a dampening effect, on the other hand, Daniela's stay in the clinic did not end the issue of everyday stress. At the beginning of 2018 we hired the first assistant and then steadily expanded the team. At the beginning with the clear task of covering my needs. From the end of 2018 we started with a small amount of assistance for household support. This then developed continuously until it took over a large part of the household tasks. Daniela had been on sick leave at work since the beginning of 2021 and our team of assistants grew to 4 people on 5 days, as well as 3 assignments by the Spitex.

Unfortunately, this support could not reduce the burden perceived by Daniela. The tensions within our threesome built up and flattened out again and again and this at ever shorter intervals. Last year we brought in a therapist to support Daniela. After the stay in the clinic, there was additional support from HotA (educational and family counseling) and we consulted a couples therapist. At the therapists' recommendation, Melissa began art therapy specializing in children to provide Melissa with appropriate but informal support. This year was also characterized by the fact that more people gained insight into and moved into our family life.

2022   At the beginning of 2022, Corona caught up with us and Daniela and Melissa had to accept the associated restrictions. Despite intensive contact, I was spared.

Almost two weeks later, Melissa caught the regular flu and had to stay in bed during the first week of her holidays. It shouldn't be the last time that the topic of health accompanies us, on the contrary, it shouldn't leave our side all year long.

Shortly afterwards, the first quarterly examination took place at REHAB Basel, which once again confirmed the very slow progress. As an exception, my specialist was represented by another doctor. As it turned out later, her health limited her until my quarterly check-up at the end of the year.

In the following weeks, Melissa caught another short cold, and this time infected my assistant. So, we had a start to the year that was marked by all kinds of illnesses.

We met a new couple from the local area. The woman was the same age as me and had been diagnosed with ALS around the same time period. At the beginning of the year, we met for coffee at their place and were able to exchange our experiences - partners with each other, those affected with each other. I think the conversation was interesting for everyone involved.

Travel was still difficult for various reasons. To be able to offer Melissa interesting sports holidays, we registered her for an introductory inline skating course lasting several days. A complete success.

Spring presented itself with very pleasant weather, so that I was able to go on one or two excursions in the wheelchair with Melissa early on.

Since December 2020, we had rented a nearby studio for Daniela to give her the opportunity to retreat if necessary. This type of short break had its benefits. But it also gave Daniela a feeling of loneliness. We have now canceled this because it was not used enough, and a longer clinic stay was planned at the end of the month.

But before that, we rewarded ourselves with a two-week vacation in Italy and were able to recover from the exertions. My assistant, who was employed full-time, accompanied us so that Daniela could fully enjoy the holidays. Shortly before the first clinic stay in 2021, differences of opinion had arisen between the therapists and me regarding appropriate everyday support for Daniela. The only time I had any meaningful conversations was with the couples therapist.

The situation at home had not improved for Daniela and the tensions reached a new high. We had found a possible solution with the couples therapist, but the need for a second clinic stay arose. It was necessary to give Daniela another longer break. My bright spot here was the solution approach we discussed, which, sensibly, we didn't want to start until after the clinic.

Entry has been set for the end of April 2022. This meant that I had to organize myself well together with Melissa during these 8-12 weeks. This was mainly about night care and weekends. I was again able to rely on the support of my assistants, family and friends. However, this time it was unavoidable to hire one or two additional assistants on a temporary basis. The organization and implementation was a real challenge and extended beyond the entry date. Since the stay lasted until the beginning of the summer holidays and Daniela was still on vacation for a week in Italy with a friend from her first clinic stay, I had to pull out all the stops. Thanks to the great and tireless support of everyone involved, this was able to go almost smoothly.

In the weeks that followed, it became apparent that Melissa and I formed a dream team. Our everyday life worked perfectly, even when we were alone. We went on many small and large trips in the wheelchair after school and on the weekends. Be it a walk along the Aare river or a visit to the swimming pool. A city stroll in Aarau was also always on the agenda. We also dared to go to the cinema as alone for the first time, which went surprisingly well. Of course there were also some visits to Daniela, together with her parents or friends.

On the last visit, 2 weeks before the end of the clinic stay, an on-site couples interview was planned. The exit process and follow-up care should be discussed. But when I arrived at the meeting, Daniela told me that she had decided to separate - the day before our report was broadcast.

This decision wasn't entirely surprising to me, but it was very unexpected, as we had decided before the clinic in favor of a common solution approach, with the support of the couples therapist. I also made various changes to the apartment to visually support the restart. I found an artist who decorated our wall in the dining area with an air-brush painting. He used photos and impressions from our vacation in Thailand for this purpose. To extend the relaxed atmosphere, I bought various plants for the interior as well as 4 palm trees and a hammock for the terrace.

The following weeks caused some unpleasant situations for me, as I was approached by various people - including strangers - after the report was broadcast. The admiration for our journey together was always mentioned and that I consider myself lucky to have Daniela. How do you react and have such conversations…….?

The summer holidays were different this year. Melissa enjoyed two children's sports weeks at home in Aarau. She spent the third week of her vacation with my sister in Interlaken and got to know the mountains on many hikes. At the end of the holidays, Melissa spent time with Daniela and her parents in Pinarella, Italy.

I concentrated on how I organize everyday life with the new circumstances. The feeling of running a small business increased again - which felt very good!

We had discussed that Melissa would stay in the apartment with me until further notice. Daniela got her own apartment nearby so that Melissa could go to her at any time. As soon as she felt better, Melissa could initially sleep with her for one night. We would then expand this further according to the possibilities.

Priorities also changed. While I had previously put everything personal aside in favor of the family and Daniela's recovery, my entire focus was now on Melissa. All of my decisions are aimed at ensuring that Melissa can grow up with as little stress as possible - a separation of ones parents is not easy, even under “normal” circumstances. Melissa already knew the situation without Daniela and the fact that contact with her took place regularly certainly gave her a smoother transition.

Because I am who I am, this resulted in a 10-year plan for me. Then Melissa would be almost of age. It is unclear when Daniela will be able to fully care for Melissa. That's why my plan stipulates that I would be able to actively accompany her in her usual home until then. It is also very important to me to give her healthy independence and self-confidence.

After the summer holidays, a new phase began in many respects.

Melissa was able to look forward to her first day of school, which she had been looking forward to for a long time.

Two new assistants started working with me. This meant that the new operational plan could slowly take shape. Due to the new wage structure, I unfortunately had to let others move on.

Daniela moved into her apartment and her presence was increasingly reduced in line with the changing schedule.

Of course, it was also important to inform those around us, who continued to be part of both of us.

Meetings were held with the various therapists and authorities involved to assess the situation and determine what would be continued and in what form. Since Melissa would be staying with me for the time being, I had to make sure I was considered up to the task. In various conversations before, I didn't always feel like I was taken seriously or treated as an equal - an experience that I unfortunately also had in other situations since I was in a wheelchair and my voice changed. Foreign placement was absolutely out of the question for me!

The rest of the year went quite well. We went on a lot of trips, a few as a group of three. Melissa and I made a great duo with an entertaining everyday life.

At the end of the year, the separation agreement was confirmed by the court. I was also able to complete the final organizational adjustments for my assistance.

At the beginning of December, I was struck by a cough that persisted for the next two or three weeks.

The personnel situation is relatively stable, but the many organizational tasks during the year have taken their toll. Work on my website has almost come to a standstill.

Looking back, I realized that an inner tension had been released in me, which had kept me on track to stay consistent in all areas over the last few years. Now I've noticed that I've been a bit "sloppy" in the last few months. So, I no longer did my exercises with the usual consistency and my drive in volleyball was pretty lousy for me. The approaching turn of the year was a good time to slowly tighten the reins again.

Christmas dinners with families and New Year's Eve were the same as last year.