September 2012

June 2013

In the meantime this numbness occurred faster and more frequently and led to my training being discontinued because this numbness could no longer be shaken off easily. Although I don't go to the doctor very quickly and because of every little thing, the time had come for me to start this tiresome path. My family doctor had known me since the time I was still walking in diapers and also from my neighborly relationship. He had integrated his practice in his house, which was our house next door, and I knew his children from the sandpit. He was one of the few doctors who could win my sympathy. His manner was very friendly and pragmatic. He showed me the full range of possibilities very objectively, but left every decision to myself. After describing the situation, to my astonishment, he only did a few tests in order to determine the next step and then came to the conclusion that the further clarifications are to be carried out by a neurologist. In retrospect, I have to give my family doctor a lot of recognition, because later, in the ALS meetings, I heard many stories about lengthy investigations from doctors and, thanks to his correct diagnosis and the correct assessment by the neurologist, I was on the direct path to the ALS- Specialist in Basel. He arranged an appointment with the neurologist for the next free time.

July / August 2013

I had two appointments at the neurologist's where various tests were carried out to observe the functionality of the nervous system, such as the reaction time of the nerves at certain measuring points on the body. On the third appointment, the results of the measurements were discussed. I did not receive a clear diagnosis from him, but the message that I had to go to the University Hospital in Basel for further clarification - directly to my current ALS specialist Dr. Schweikert. In retrospect, from the experience of the ALS meeting, this was also a stroke of luck that the neurologist had the right suspicions.

October 2013

I went to my first appointment without much expectation and I had no idea which specialty Dr. Schweikert represented and how the process would be. There was an initial interview and then tests that, unlike the neurologist, were carried out with simple equipment. As I now know, these tests also related to checking the function and response of my nervous system. For the second appointment I received a written invitation with the request to take someone with me. To take someone with me to discuss the results seemed senseless to me, whereupon I clarified by phone whether this was really necessary. My wife Daniela - then my girlfriend -accompanied me and to my surprise one of my best colleagues was waiting in the hospital, who also played with me on the volleyball team.

In retrospect, I learned that my current wife Daniela had already started researching symptoms and possibilities on the Internet after the first test at the neurologist. She also googled the specialist and by the time the appointment at the hospital she had already come to the conclusion that it could be ALS. She had also communicated this suspicion to my colleague and asked him to accompany this conversation as additional support.

The results were discussed as a whole in the conversation and the doctor stated that she had a suspicion. In order to confirm this suspicion, further extensive tests would be necessary in the University Hospital Basel. Due to the suspicion not mentioned by name, Daniela asked what the suspicion was now. Miss Dr. Schweikert explained that she did not want to cause unnecessary stress and asked me if she should call the suspicion by name. Before I could answer her question, Daniela answered and asked if it started with A, which Dr. Schweikert confirmed. At that moment I thought, okay, here are three people and I'm standing in the woods! The doctor must have noticed this too, because she asked me if I knew what they were talking about. I said no and she asked me again if I would like to hear the name of the suspect. Upon my confirmation, she informed me that she suspected ALS. Since I was just as smart as before, she gave a little bit of information about the disease and never asked us to google it on the internet. This with the following reason: On the one hand there would be a lot of wrong information and on the other hand most of the information outside the context could lead to a wrong picture. On the other hand, there is a lot of image material which, without confirmation of the diagnosis, would arouse false emotions.

Although everyone suggested that I shouldn't get behind the wheel, I insisted on going home myself. On this trip home, Daniela told me, at my request, what she could learn about ALS.

On this day my rational being showed itself fully for the first time, but at no point was I even remotely overwhelmed by emotions. This remained so in the aftermath.

At a later point in time, various conversations raised the question of repression or non-acceptance. At first I always quickly denied this. Because of the repeated theming, I questioned myself if my first thought was really honest. At that moment I asked myself how I really felt about these two topics. I carried out a self-analysis in the following areas:


On our way home, I spoke to Daniela in depth about the clinical picture. In the following weeks we had a few more discussions about the possible effects and consequences.

A few days after the ALS diagnosis was confirmed, Daniela and I had very detailed discussions about our relationship and later about the wedding and the decision to have a child, especially in view of the average life expectancy of 3-5 years for this disease. I have also given myself extensive thought to the subject of family and financial security.

Professional activities

Even though the first diagnosis was provisional, I began to think about the consequences for my job and considered possible solutions.

After the ALS diagnosis was confirmed, I had a meeting with my supervisor immediately, as the effects would be very serious and the necessary measures would require time-consuming planning.


After the ALS diagnosis was confirmed, I actively discussed the possible succession arrangements in the clubs, in my role as a player / player-coach, board member and coach.

My conclusion is, that if I want to plan these three areas responsibly, I have to deal intensively with the consequences of the clinical picture. In terms of, what challenges come with the disease, what does this mean for me personally and for those around me and how do I deal with them. Therefore, I can neither suppress nor not accept the diagnosis. Today I can backup my negation with rational self analysis.

October / November 2013

I was asked to stay at the University Hospital in Basel for an initial one-week stay in order to confirm or refute the diagnosis through various tests, based on a elimination process. On my way to the hospital I had mixed feelings, because on one hand it was important for me to get clarity, on the other hand I am not a fan of hospitals as I had got to know them so far.

My impressions have been shaped by the few visits to older hospitals where the typical hospital smell prevailed and thus created an unpleasant atmosphere. Also the first appointment in the hospital, on the occasion of the first examination of the specialist Dr. Schweikert, confirmed this picture, since this examination took place in a small room without a window.

When I entered, I was taken directly to the ward where the ALS patients are also cared for. This path opened up a completely new image of a hospital for me. The corridors were pleasantly bright and always flooded with daylight. The smell in the air was still reminiscent of a hospital, but was characterized by the smell of the disinfectant, which made me feel much more pleasant. Even as a general insured person, I was assigned to a room with two beds only. Since the diagnosis was not yet certain for me, I had the room to myself. In retrospect, I learned that this was done on purpose, to avoid visualization of the possible clinical pictures. The room had an almost room-sized window, which ended with a wide ledge at the bottom, on which one could sit comfortably at the window. As a result, the room was filled with daylight and did not trigger any restrictive feelings. The room was on the upper floors and thus allowed a clear view into the distance and over the roofs of the city of Basel.

For the meals, I was given a weekly menu plan that offered at least three choices for each meal. I also learned that the University Hospital had a star chef at the time, which was noticeable with every meal, no matter how small. The hospital staff was very courteous and most of them were always in the mood for jokes. So my dreary image of the hospital turned into an image of a vacation-like stay in a hotel - if you keep the diagnosis out of mind.

The first thing I got was a brief insight into the planned process. I was informed, that different tests are planned, that could indicate different diseases. This means, that after completing a series of tests related to the disease, I would have a pause, during which the specialists would evaluate the positive or negative outcome. This principle of exclusion procedure would be continued until either one test would be positive for another clinical picture or only the diagnosis ALS would remain after completion of all test series. This is the only approach so far as there is no specific ALS test to get a diagnosis.

I remember two particularly impressive moments from the various series of tests. At the beginning of my stay I was taken to the cellar, into a windowless room, and was allowed to make myself comfortable there on a bed. The plan was to analyze nerve activity and reaction time. However, this was done here on a much larger scale as with my Neurologist back home. So, from the tip of the toe to under the eyes, no fewer than 63 needles were placed, of course not all at the same time, but that made no difference to me, who was terrified of needles. For some it's acupuncture, for me it's just torture, and as if it couldn't have been worse, the doctor hit a nerve with the third needle. The electrifying pain that resulted was one of the most painful things I've ever experienced. This clumsiness was not repeated, but because of the tension that now reigned in me, one or the other needle prick turned out to be much more painful than it should have been.

A day or two later I was prepared for a spinal cord puncture. At that point, I had no idea what that was supposed to be. I was picked up and once again taken to a windowless exam room on the ward. For this I was allowed to stay in bed and be chauffeured there. But what I then saw lying there on the table awakened unpleasant memories: a syringe with a needle size, from my point of view, not suitable for humans. In another situation I would have assigned this to an elephant. I was then told that I should lie on my side and curl up as much as possible. The idea is, that the vertebrae move as far apart as possible, so that you can pierce between these vertebrae with the syringe in order to be able to draw nerve fluid from the spinal cord for analysis. Local anesthesia was used to relieve pain - with a syringe, of course. The whole procedure was more or less painless, but the impression of what was being done engraved itself deeply in my memory.

As a positive aspect of this examination week, I can say that my needle phobia was cured and today I can go through the recurring blood tests with a smile.

The test series was completed on Thursday and I was allowed to go home on Friday. The discussion for the result from this examination week was scheduled for a later date.

November 2013

To discuss the results, we were invited to REHAB (rehabilitation clinic in Basel) by Dr. Schweikert . Here we were informed that, based on the results, the diagnosis was rated as “probably ALS”.

This for the following reasons: In none of the test series a positive result could be found, which means that the ALS clinical picture remained. The few and not distinct symptoms at this point were insufficient to make a final diagnosis of ALS. The final diagnosis of ALS was confirmed in May 2015 due to the advanced symptoms.

In this conversation, Dr. Schweikert initially gives a general insight into the clinical picture, as the course of the disease is very individual. We were again confronted with the average life expectancy of 3-5 years and she suggested, that we should do all planned activities promptly. She offered me a certificate of partial incapacity for work, which I rejected, however, since reduced work was out of question for me at the time. Here too, my rational nature took over. My discomfort at reducing my work and sports activities was much stronger than the feeling of missing something in life, as my life was defined by work, sports and relationship.

She also provided information about the upcoming measures with regard to social security and personal matters. She particularly emphasized the initial registration with the Disability insurance - Swiss public insurance plan, due to the necessary processing time for applications and the waiting period for the payment of benefits.

December 2013

Based on the input from Dr. Schweikert, for the first time, I dealt in depth with possible measures that might come our way. How could it be otherwise, I focused primarily on the practical elements, such as social security, general insurance and any financial aspects. Daniela, based on her previous research and correctly suspected diagnosis, had already received an initial insight into the clinical picture and was able to continue it more specifically, now with the information received. Her focus was primarily on therapies, medications and possible health changes. In that sense, we complemented each other very well and were able to keep each other up to date. During our first exchange of this kind, for a brief moment, emotions came over me for the first time, accompanied by tears.

Based on the input from Dr. Schweikert, for the first time, I dealt in depth with possible measures that might come our way. How could it be otherwise, I focused primarily on the practical elements, such as social security, general insurance and any financial aspects. Daniela, based on her previous research and correctly suspected diagnosis, had already received an initial insight into the clinical picture and was able to continue it more specifically, now with the information received. Her focus was primarily on therapies, medications and possible health changes. In that sense, we complemented each other very well and were able to keep each other up to date. During our first exchange of this kind, for a brief moment, emotions came over me for the first time, accompanied by tears.

Meine Schwiegereltern, wie auch der Bruder und die Zwillingsschwester von Daniela wurden bereits von Daniela informiert und auch sie sagten uns ihre uneingeschränkte Unterstützung zu.

Another important aspect for me was our relationship. On one hand we hadn't been together for long (we met for the first time in 2011), on the other hand there was an age difference of 16 years, which means that Daniela was still in the prime of her young life. In view of the increased need for care and the associated restrictions in active life, from the perspective of that time, it seemed to me only fair to offer her an opportunity to leave the relationship. It was therefore important to me to address this issue as soon as possible. I had already mentally prepared myself that a termination of the relationship might come into question, which would have been understandable for me. I would never have carried this decision against her. Her reaction, which came without hesitation, filled me with great joy. I felt incredibly happy that she didn't want to end the relationship! I told her, that if she thought differently at any time coming, I would understand and she would not have to have any bad feelings.

All alarm bells were ringing for my job, because I was responsible for an area that was not insignificant for the company. Up to this point, no additional position for a deputy could be awarded. However, an Assistant was employed three months before the diagnosis. Based on my diagnosis, it was clear that an additional person had to be found to fill the position as my successor. Due to the urgency, I arranged a meeting with my Supervisor the following week. I informed him about my health situation, the diagnosis and the expected changes so that he could start the job posting as soon as possible. Once again I discussed the expected training period of at least one year with him in order to be able to cover the entire complexity of my area of ​​responsibility in a practical manner.

January / February 2014

January / February is the period when I start planning the upcoming season in the sports club. The championship ends at the end of March and the new season begins after a two to three week break. Especially when major changes are pending, it is advantageous to be able to prepare and / or initiate necessary measures at an early stage. Accordingly, the time had come for me to inform the necessary people in the sports club about my diagnosis and the possible consequences related to it. Since my close friends were mainly formed from the team where I played myself, I was able to kill two birds with one swap. Since we usually had a water or beer together after practice, I took this opportunity and, as an exception, asked for full presence. Although I am aware of my rational nature, I was a little surprised at how calmly and clearly I was able to explain the situation to the team. At least that's how I perceived it. The concern in the group was clearly visible, but I believe that my calm demeanor helped the group to react in the same way. To this day, there are two main points that I expect from myself and those around me that fit perfectly into the "Sumo" group (we gave ourselves this nickname, big men with big bellies and big hearts):

  • I expect the same treatment as it was before, I do not want any special treatment unless it is unavoidable.

  • I love black humor and there has to be room for that. Important, black humor for me has nothing to do with a life-despising attitude.

Here too, as expected, I was able to rely on great support.

In the sports club where my heart beats to this day and was a member of the board and also working as a coach at the time, I first informed the board in an upcoming board meeting. Here too, I was able to experience the same reaction. It was important for me to be able to continue my contribution to the board as long as it makes sense. This allowed a gradual withdrawal and thus well-regulated handover. As a result, I informed my team about the situation and that I would continue as a coach as long as I was able to do so or the team could deal with it. To what extent this was understood by the players is not entirely clear to me, as the age range was between 14 and 27 years. In this context, I also quite deliberately did not go too deep into the details of the disease.

I then informed the rest of the environment at work, in sport or also privately at the right opportunity or when someone picked this up somewhere and came up to me. I realized again how quickly news can spread.

After talking to Daniela about the further course of our relationship, I looked a bit into the future, as is my nature. More extensive vacation plans and / or increasing care needs would certainly take their financial toll - despite government support - from both. As I picked up on in reports from other situations in the past, in a partnership in which a person dies, pain and grief can be additionally burdened by unclear financial and legal situations that arise from unregulated relationships (no marriage or registered partnership) . Marriage would clarify the legal situation and thus offer a certain security for Daniela's future. For me, a marriage would depend on my future in-laws, despite the situation, giving Daniela unlimited support. On a weekend visit with them, I took the opportunity to take up this topic. With the confirmation that they would support any decision by Daniela, I was able to pursue this thought and the related tasks. In February I had business trip to the USA and Daniela and I had agreed that she would accompany me and that we would add three more days in private, for a visit to New York. This opportunity provided an ideal setting for me to plan my marriage proposal. My first thought was to do this over a nice dinner high above the rooftops of New York. However, due to the short term, this could not be arranged. An alternative option on Times Square was too cheesy for me, especially since I don't like to be in the spotlight. I was lucky enough to be able to reserve a table in a nice Italian Restaurant in the immediate vicinity of Times Square. Relying on the pictures from the Internet and extremely positive recessions, the planning was completed.

Before starting the trip, I had bought an engagement ring and had to make every possible effort to keep it hidden without loosing or forgetting. The choice of restaurant was a real stroke of luck. The Italian Restaurant fulfilled all the clichés I knew from the films of the 30s with James Cagney or the 60s with all the well-known Hollywood greats. The furnishings consisted of very noble materials and reminded me of a successful mixture of Italian-American ambience and a touch of mafia romanticism. A certain tension and nervousness had already come up in me at the beginning of the evening and it increased almost immeasurably by the hour of truth.

I have to admit that due to the nervousness I could not remember the exact course of my proposal but my feeling told me that I got tangled up countless times. Despite my clumsy approach, I was rewarded with a YES!

March – May 2014

In the meantime the diagnosis was almost six months old and apart from minimal muscle twitching and the restriction in sport, nothing else was visible from the outside, and also nothing new was noticeable to me. My activities in all areas had not changed, except that I no longer trained as a player myself. Dr. Schweikert informed us, that based on previous experience, ALS is a disease with a linear course, i.e. an approximate course of the disease can be extrapolated from the changes that are found in a “representative” period of time.

For me, already at this point, consciously or unconsciously, this resulted in a prospect of 5-10 years and did not trigger any need for a radical change.

June 2014

After I had dealt a little deeper with the regulations for the Disability Insurance (DI) - based on the input from Dr. Schweikert, the time had come for me to fill out the form for the early registration and submit it to the DI after a telephone consultation with them. In order to receive support such as aids at work and / or necessary adjustments in the apartment, a registration is necessary. Although I didn't need any of these at the time, I had heard that the processing times could be very different. To avoid any bottlenecks here, it made sense to register early.

In connection with the pension, I learned from the regulations that a one-year incapacity for work of 40% is a prerequisite and that benefits will be provided at the earliest 6 months after registration. The early registration should keep the gap between the end of work and receipt of the pension as short as possible.

July – August 2014

During the time since the diagnosis, Daniela and I had discussed not only the topic of relationship but also the topic of having children. If the course was rather slow and the test for the hereditary type was negative, we agreed that we would have a child. In the meantime, almost nine months had passed after the diagnosis and the changes were barely noticeable. The last conversation with Dr. Schweikert rather pointed to a disease course of 5 years. We had decided that pregnancy should not affect the upcoming honeymoon, but should start by June 2015 at the latest, in order to enable us to have a meaningful time together for three.

In the middle / end of July, Daniela's family started their traditional holidays, i.e. her parents, her sister with family and her brother with his daughter. Her parents have a small house in Pinarella (Italy) - neighboring town of Cesenatico, Cervia region, which has always served as a summer holiday destination for the entire family. During these holidays I was still able to participate in any sporting activity or nonsense on land and on water.

The Military Tattoo in Edinburgh Scotland, with the unique backdrop of the castle and the old town, had always fascinated me and attending it was something I had always thought of but never implemented. Now the time had come and we combined the Tattoo with a whiskey tasting at the Glenfiddich distillery and a great road trip through Scotland. We were able to take home many beautiful impressions from this round trip. But one souvenir was very special and will stay with us for a long time. During our stay in Edinburgh we went on a city tour with the hop-on hop-off bus and sat on the open upper deck. On the tour we passed an advertisement for lemon balm (in German "Zitronen-Melisse) and as luck would have it, we both said that Melissa would be a nice name for a girl the same moment, triggered by the poster. We'd already started making long lists of girl and boy names, and until the end, Melissa was the only name we both liked right away. In retrospect, I have to say, that thank God we had a girl, otherwise the naming would have had the potential for long and restless nights.

September 2014

On September 12th the time had come, after a photo shoot we had our appointment at the registry office to tie the knot. We both agreed that we didn't want a church wedding. The team that I trained and in which Daniela played, accompanied by other club members, waited for us at the entrance of the registry office and stood in line. Friends and acquaintances as well as the two clubs in which I was active were invited to the following aperitif. The dinner then took place with family and close friends.

November 2014 - January 2015

Due to the restrictions to be expected in the future due to the illness, we decided to plan an extended honeymoon in order to visit as many desired destinations as possible. For this purpose, we had deliberately checked our financial situation in advance and also kept the budget for the wedding small so that we could draw on full resources for the honeymoon. Our journey led us from Switzerland first to Singapore, then to the Philippines to visit family, followed by a small round trip in Japan. Next came a small round trip in China. From there we flew to Bangkok to enjoy a tour of northern Thailand, followed by a short beach holiday on the island of Ko Samed in Thailand. In this relaxing phase of the trip, the time has started to allow pregnancy. In retrospect, the gynecologist surprised us with the roughly calculated time of conception, which fell exactly into this time.

From there we went to Australia, where we visited a very good friend for two weeks and celebrated Christmas there for the first time at 30 degrees Celsius. In addition, we received the most beautiful Christmas present one could wish for, a positive pregnancy test! The timing couldn't have been better.

At the end of the trip, after a long flight via LA and Miami, we went to Barbados, where we boarded a cruise ship to enjoy a two-week tour of the Caribbean. This was also the first New Year celebrations on a ship for both of us, also in shorts and very pleasant temperatures. Coming back home was quite a temperature shock and the shorts I wore totally out of place. The nice thing about the trip was that the adventurous stages did not experience any restrictions yet due to the illness. It was the last trip without compromises.

February 2015

Since the course of the illness was fortunately very slow, registration with the DI had not yet led to any claims for benefits. As a result, after consulting me, the DI had temporarily closed the dossier due to a lack of needs on my part. Temporarily means that the documents and information submitted for the first registration are kept in order to be able to process the dossier and thus a second registration quickly and easily when the first needs arise.

April 2015

During this time, the first minor changes in motor skills and sense of balance became noticeable in everyday life. Writing by hand was still fine, but something felt weird. Occasionally, I did not grip pens properly or even let them fall, which was actually atypical for me. It was known to have a fairly quick step when walking. I usually walked around corners by turning 90 degrees on my foot. This way I had a quick and efficient walk around tables and stands in the office. This is where the first changes became apparent, as I suddenly began to touch tables and other "obstacles", which had never happened before.

May – July 2015

During this time, Daniela's pregnancy was clearly in the foreground, which was not only characterized by her big belly. It was a very warm summer, also during the family holidays in Italy, which was not always very pleasant for Daniela. At that time, Melissa could already look forward to her first appearance on the volleyball team photo.

August 2015

The birth of Melissa was just around the corner and everyone was looking forward to holding her in their hands for the first time. Our decision to have a child was happily received by everyone around us. Of course there was one or the other critical questioning, but nobody showed incomprehension for our decision. We already knew that we will have a girl and, interestingly, it was what both of us wanted. The calculated date of birth was the end of August / beginning of September and thus also included my birthday. At first I had hoped that Melissa would be born on my birthday, but as it got closer, I hoped for another day so that she would have her own special day.

On Thursday, August 27, 2015, I had just finished the practice with the team and we were sitting with an other team in the garden terrace of a restaurant close by, when the phone rang and Daniela informed that the first contractions had started. I ask her if I should come home straight away, but she said no and she said that I don't have to jump right away. So I waited for the wheat beer I had already ordered. Just as I got the beer, Daniela called again and said it would be good if I came home and informed me that she had called the hospital and they thought it was better to come to the hospital, due to the intervals of the contractions. So I rushed down the beer and immediately made my way to Daniela. She had already prepared a bag a few days before, so I only had to take the bag and we could go straight to the hospital. We had both prepared ourselves well for this point in time so that there was no nervousness or hectic pace. We knew from others that the entire birth process can sometimes take longer, especially with the first child. We entered the hospital at 11 p.m. and Melissa was born at 3:23 a.m. The whole birth was a very nice and exciting moment for me and I was glad that Melissa wasn't born on my birthday, but one day before and therefore had her own "big" day.

September – October 2015

Knowing that traveling in the car would be accompanied by a wheelchair in the future and the space required for Melissa and the stroller, it was clear that in the near future our car would no longer be able to meet the requirements. We had therefore been on the lookout for a while for a suitable vehicle that could meet the space requirements for stroller, electric wheelchair and as a team bus. The vehicle should offer a pleasant car ambience, but stay within limits financially. The last two aspects seemed almost impossible to fulfill when we were once again able to experience a happy coincidence, as we have done several times since the diagnosis. The model that until then met best our criterias came from PSA (model Peugeot or Citroën). Full of confidence, we went to the nearby Peugeot dealer to clarify the possibility of a viewing and test drive. Unfortunately we had to learn that this model has recently been out of production and as far as he could locate it, no new or as good as new vehicle was available. As we learned, this model was a collaboration between Peugeot, Citroën and Fiat, who used the same platform to complete the brand's own model. We searched the Internet for these two other options and found that these two brands had also stopped production and that no acceptable XXL model was advertised. As luck would have it, on my last attempt in search of the Citroën model, an offer popped up from a dealer, who was just near by. The XXL model, which served as a showroom car and was therefore equipped with everything that was available, with just 1000 kilometers and because it was probably a discontinued model and the financial year was drawing to a close, was reduced from 65,000 to 35,000 swiss francs. We couldn't miss this bargain, especially since it was the favored model with favored color. What was important, before buying, we had to work with a conversion specialist to ensure that the model in question could really be converted to fit an electric wheelchair, without any restrictions in the vehicle manufacturer's warranty. We just really became aware of the importance of this clarification with the clarification itself.

Now the time had come when I decided to reduce the workload to 50% in order to compensate for the therapy times. Therefore it was necessary to do the new DI registration. Herewith the early intervention measures are initiated, which are intended to support rapid reintegration into the workplace or to maintain the ability to work for as long as possible.

December 2015