My ALS Journey (15/n): A typical Day

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You may wonder how my day looks. Let me compare a day before ALS with a current day

>> My ALS Journey so far <<

A typical Day

My day before ALS is not so exciting. A table will do the job.

Currently, all has changed. Now, I have 24/7 support from 4 nurses, together with Beatrix.

At 8:00 a.m., my support team lifts me out of bed. After that, breakfast is served. This takes about 45 minutes. Then it’s time to shave, brush my teeth, and perform general morning hygiene. Therapy begins at 10: occupational therapy, speech therapy, or physiotherapy.


I finally made it at 11:00 a.m. so I could work. From 11 to 1 p.m., I worked intensively on my mentoring program.


At 1:00 p.m. there is food. I have already achieved my first goal. I have gained 5 kilos. This is important for the prognosis of ALS. Unfortunately, my pants no longer fit me. After eating, I sleep for an hour.


Around 3:00 p.m. I start the second productive phase by devoting myself to my mentoring program. This ends at 7:00 p.m. with our dinner. After that, I sit in front of my computer for an hour.


Monday and Friday are special. On these days, I shower. The whole procedure takes 45 minutes.
I enjoy the remaining three hours of the day with Beatrix. We watch series and play with our cats. By the way, it was not easy to agree on a common series. I favor films with blood and violence, and Beatrix loves historical dramas. But a woman must also play a leading role in these.

My Plans


In the future, I would like to go on trips again. But for that, I still need an electric wheelchair and a car to go with it. The electric wheelchair has now been approved for us, but it still needs to be customized to my measurements. The car needs an extra ramp for this, which allows me to drive directly to the wheelchair. This is necessary because the chair weighs about 150 kilograms.

 

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    Time to go Public

    I have put a lot of time into my mentoring program and I am very proud of it. Now it’s time to showcase it better. How? Wait for Thursday.

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