January 2016

Already in January I received the confirmation for the aids, which had been clarified in advance with the company Active Communication and confirmed by SAHB. The installation took place in the same month.

During this time, the first restrictive changes became apparent. The impaired fine motor skills and the onset of loss of strength in the hands and fingers made it difficult to work in various everyday activities, including changing and dressing Melissa. When getting dressed, the first difficulties arose with handling buttons, zippers and laces. Helping out in the kitchen was increasingly reduced, as handling knives was no longer entirely harmless and opening cans, packaging, etc. increasingly required assistance. The independent eating became more exhausting and I had to resort to aids, e.g. a straw or special cutlery or tricks.

In January there was a clarification of the living situation at home with a representative of the SAHB (specialist representative of the DI), a representative of FST (environmental control) and an architect who specialized in barrier-free conversions. It was found that the following adjustments are necessary:

• Conversion of shower to floor level

• Change from standard toilet to shower toilet
• Ramp to access the terrace
• Automation of the front door
• Environmental control for blinds, lights and doors

It was to be assumed that the benefits from my health insurance could increase. On the recommendation my doctor, I asked my health insurance company to provide a case manager, with the idea that any claims for benefits could be dealt with in a more targeted manner.

February - March 2016

In mid-February I had an appointment at REHAB Basel to try on a manual and an electric wheelchair. Then I submitted the application to the DI, which issued the cost approval in mid-June. The manual wheelchair was already delivered in April, the electric wheelchair followed in November.

During this time the interesting experience and perception began that body and mind develop differently. Despite the physical changes that I could now perceive, my head didn't care and went about business as usual, i.e. every little adjustment in the movements that I did not notice and memorize could catch up with me sooner or later. New changes had the potential to appear unhappy when they first occurred. So in April my first fall occurred when I came down from the third step on a ladder, where my head said, "now we're going down" and one leg didn't notice it. The resulting fall resulted in a painful bruise of my ribs. Unfortunately for me, the pain occurred when my stomach was too full or when I laughed. Fortunately, from sport and work, I was used to paying attention to details and memorizing them. This meant that in the following years I only had to make few such unpleasant experiences.

April 2016

In April we received the decree from DI, that the renovation work could be carried out in the apartment. In addition, we also submitted the application for the vehicle conversion to transport wheelchairs.

May 2016

An addition for the renovation work in the apartment concerned the control of lights, doors, etc. For this, I received a cost approval from DI in May for clarifying the required environmental control.

June 2016

The DI approved the vehicle conversion this month.

More often I had to resort my way of shaving to unconventional methods, as well as for hairdressing or brushing my teeth. For wet shaving, for example, I held the razor with both hands, my arms partially resting against my body, and then shaved with combinations of head and / or arm movements.

​​​​​​​Since I wanted to be independent and my competitive spirit was still very strong, the whole thing didn't seem inconvenient to me, but a practical approach.

July 2016

The foreseeable increase in depending on assistance and the related additional burden for Daniela, encouraged me to apply for Supplementary benefits* from DI. This registration was suggested by Daniela and had been in the room for a while, but my need for independence always put this application before me.

*They are a legal entitlement and not a form of public or social welfare. Together with OASI and DI, the supplementary benefits are part of the social foundation in Switzerland.

August - October 2016

In August I received the cost approval for the environmental control. The implementation was integrated into the renovation of the apartment.

In September we received a notification from the DI regarding the application for supplementary benefits. The application was rejected in the sense that the supplementary benefits is recognized, but due to the waiting period, benefits can only be paid starting April 2017.

In mid-October, the renovation work in the apartment could be started. The first two weeks were noisy and dusty, as extensive sharpening work had to be done for the renovation in the bathroom. The following two weeks turned out to be more pleasant, as the installations were made and the tiles were laid. A special coating was applied to the floor to prevent the risk of slipping.

The conversion of the car could be carried out in October. Therefore it had to be given to the workshop for two weeks.

November 2016

As of November 2016, the situation had developed to such an extent that the need for assistance was inevitable in order to avoid overloading Daniela. There was hardly an area that did not need a creative approach in some form or support from a person. For example, brushing my teeth with an electric toothbrush turned out to be such that I had to put my hand on the edge of the washbasin and then brush my teeth while bending over and moving my head. All activities related to dressing and undressing, personal hygiene, general housework or manual activities were largely no longer possible due to the dwindling muscle strength. For a short time I had made up my mind to at least go through the apartment with the vacuum cleaner, since the leg strength had no significant restrictions and the arm strength was only minimally necessary for this activity. However, I had to take a longer break after 10 minutes at the latest, because the neck was exhausted and the head only hung and hurt. This was a first milestone in two ways. On one hand, the need for external help in form of Assistants or Spitex* could no longer be disregarded; on the other hand, the exciting time of biomechanics began for me. For a person with a technical background, like me, it became increasingly exciting to recognize / discover how the functional dependencies in the body are similar, as I knew it from the technical areas of the job. This was an important finding for me, as I was able to analyze and solve any physical problems as a result, just as I did with technical equipment at work.

* Spitex are organisations which provide caregiver assistance for private homes. In Switzerland this service is covered by the general health insurance by80%. 

December 2016

We spent the time from Christmas up to and including New Year with our in-laws, because Daniela's sister and brother were also there with the children and Melissa was able to enjoy this time. We had forgotten something at home, so I went home alone to get it. It would be my first painful experience with the disease. It was one of my peculiarities that I moved quickly and turned on my foot when changing direction and it was precisely this circumstance that led to my first fall. I came out of the kitchen and turned into the corridor as usual, or that was what I wanted to do, because my head was faster than my legs and so I lost my balance in this situation. It was also the first experience that the body stiffened (spasticity) in such a situation and I could not react to it in any way with my arms or legs. For me personally, it was interesting that the fall felt like it was in slow motion. I noticed that I was starting to fall and also realized that neither the arms nor the legs were reacting and I saw the parquet floor approaching. I should have fallen on my nose, but the body turned to the side and I landed on my right shoulder, which cushioned the impact of my head on the floor. So my fall training, which I learned in my youth during Judo lessons and then renewed later in military, had proven itself for the first time in an emergency situation. As I have repeatedly pointed out in sport, automatisms can make all the difference in a stressful situation. The fall was surprisingly less painful than expected and there was hardly any pain following. However, the impact of my free fall on my right side of the body caused shortness of breath. Here, my rational side proved helpful again. My head remained calm and the analysis was already in full swing. I turned on my back and kept a straight posture (relaxes the posture and supports free breathing). Despite the difficulty in breathing, I tried to concentrate, take calm and deep breaths (antispasmodic). The body seemed to relax and breathing became more free again. Now I began to mentally scan the body to see if any pain could be felt and slowly began to move arms and legs to see if everything was still working as it should. I got up carefully and went to the bathroom.

Since my legs were still a bit shaky, I walked close to the wall in order to be able to support myself against the wall if necessary or to be able to crouch down in a controlled manner over the wall. When I looked in the mirror, I was a little surprised because I had a badly bleeding laceration under my right eye, but I was not in any pain. I stopped the bleeding and then washed my face. I had a quick drink of water and since my shaky legs were gone, I sat in the car and drove back to my in-laws. For me personally, this first fall was not a big deal, except for a first experience of my body behavior. Not everyone shared this view with me.

January – March 2017

The few personal contributions possible in everyday life were further reduced. For example, eating independently was only possible with greatest effort and the related outbreaks of sweat. Usually it became inconvenient after 10-20 minutes. It was no longer possible to stand up independently when the seat was lower than the knees or when I was sitting on the floor. For this reason we bought the Red Cross emergency bracelet for the days when I was out alone.

After a long, very long work of persuasion by Daniela, my doctor and the ALS Care Nurse, I was able to bring myself to fill out a first version of the living will and leave a copy of it with my doctor and the ALS Care Nurse. ALS Switzerland has an ALS-specific living will template and it was very difficult for me to decide how to proceed in the various cases, as most of the cases were not within my grasp. How should I commit myself to something I couldn't assess today? It took a lot of time to answer all the questions, with the background that this order could be adjusted at any time and I had agreed with my doctor that this would be addressed during the regular examinations. In this way I was able to ensure that this provision remained present and that an update was ensured.

So far, the restrictions had hardly made themselves felt when driving a car, as neither fine motor skills nor extensive arm movements were necessary. Now I noticed the first light exertion while driving and I realized that I would have to give up driving for safety reasons in the foreseeable future.

For insurance reasons, I had spoken to my doctor about driving a car and she had registered me for a driving test at the Road Traffic Office. The driving test carried out at the road traffic office could be fullfilled without any problems and I received an official Licence for one year.

April - May 2017

For reasons of comfort, I had stopped eating independently, as the circumstances of the strenuous and sweaty eating made neither fun nor sense.

We had resolved to travel as much as possible before the illness-related restrictions would no longer allow traveling. When this time would come, it was not possible for us to estimate, as we had no idea to what extent restricted independent walking nor a manual or electrical wheelchair, would influence this. With the pregnancy and the birth of Melissa we had to keep our travel activities, after the honeymoon, "regional". Now we were facing a new travel experience. Although the progression of the disease actually contradicted my usual journeys “outside of civilization”, I wanted to know where the lines were actually being drawn. We had booked a 2 week vacation on Sulawesi in Indonesia, of which 1 week would take place in a small, simple diving resort with 7 bungalows and the other week beach vacation on a small nearby island with boat transfer. Since we were now traveling with a wheelchair, we had decided to book the trip through a travel agency. This enabled us to clarify in advance wheelchair suitability as far as possible for our travel routes and destinations. In addition, we had a contact person who was available around the clock in the event of any kind of difficulty. Since we took our 18-month-old Melissa with us on the trip, Daniela's sister accompanied us to take on the dual care task. This were wonderful two weeks, but it also showed us how much preparation was necessary and how many small details had to be considered when traveling with a wheelchair or generally restricted mobility. But it also showed that adventurous travel “away from civilization” was possible and was “only” limited by financial possibilities and / or personal pain thresholds. The detailed experiences and tips can be found in the Travel section.

June 2017

With the now changed situation and the corresponding additional expenditure in support for me, we decided to start with the Assistance model. As a first step, we submitted the application for the Assistance model to the DI.

Now the one-year waiting period for the application for the supplementary benefits had expired and we had submitted the corresponding form with the self-declaration. I received the confirmation for the payment of supplementary benefits in February 2018, with retroactive payment from April 2017.

August - October 2017

Due to the various therapies and the increased time required for morning care, it had become difficult to achieve the hourly target at work. The company was extremely obliging and had in no way addressed this fact. Nevertheless, it made sense to me to adjust the working hours, as the know-how transfer and the training of my successors were well on the way.

Independent driving had reached a point that I personally did not want to exceed. Until then, I could say with a clear conscience that I was able to meet the driving safety requirements. But now I felt that in surprising situations I could no longer react 100% as I would want to. With a heavy heart, I decided to hand in my driver's license.

During this time I had my first four-week rehabilitation stay at REHAB Basel. This served on one hand to get to know therapeutic options and on the other hand to test possible aids. This stay also resulted in a rollator for safe walking training.

November – December 2017

For the end of November we received an appointment for a home visit to clarify the application for the Assistance model. A related questionnaire was then processed during the conversation, which then defines the scope of the Assistance model.

Controlling the PC supported by the aids received, mainly voice control, became increasingly unreliable due to the changes in my voice. Shortly before, I was able to successfully test an eye control at the Rolli-Vision (exhibition for accessibility solutions in the Paraplegic Center Nottwil). The eye control had convinced me and to me it represented the optimal successor to the voice control of the PC and I submitted a corresponding application to the DI in November after consulting an employee of Active Communication.

The end of this eventful year was our trip to Australia, where we first explored Perth and the surrounding area. Then we flew to the east coast to visit our good friend in Sydney and to celebrate New Year with her and her boyfriend in the Australian summer.

January – April 2018

After returning the drivers licence, Daniela had to drive me to work and pick me up again. The proportionality of the effort to work compared to the work itself was completely out of balance for me and I had decided to discontinue the ability to work at the end of 2017. At the request of my supervisor, my employment relationship was maintained until the end of March 2018 and I worked from home for three months, ready to support my successors on demand.

In February we received the confirmation for the amount of working hours awarded within the Assistance model. We put an advertisement on a website for caregivers and personal Assistance (Assistenzbuero.ch). At the same time, the employment of Spitex started twice a week for morning care.

In April the DI announced that the current DI pension payment would start on June 1st, 2018. The retroactive DI pension is still being clarified and would be paid out at a later date, which then took place in March 2019.

May 2018

June 2018

After successfully making a long-haul flight with Melissa last year without any problems, we decided to do the road trip in California this year.

This was our second trip with the manual wheelchair in our luggage. Standing or short distances on foot were still possible, but the excursions in the parks could not be done without wheels.

This trip showed that the USA can be easily traveled with a wheelchair. Even in the vastness of the Wild West, the conditions were more or less wheelchair-friendly. Only when visiting a ghost town we were shown the limits of mobility.

August 2018

September – December 2018

Since I could no longer be active with handwriting myself and thus could no longer give a signature, I had written a power of attorney for Daniela myself so that she could represent me in legal matters. After consulting our bank, I learned that a notarized power of attorney was required for legal transactions. In September, after two emails and a meeting with the notary, it was completed and Daniela was able to sign all the necessary legally binding documents for me from then on.

December 2019

At the beginning of December I received the approval for the environmental control and the related communication equipment.

The implementation had to be scheduled for the following year.