What is ALS?

There are long answers to this question on the Internet and in many medical articles. I deliberately do not want to repeat this content on my homepage. For me it is more about sharing my very personal experiences, ideas and visions for my life with ALS with you. So just a short summary of the ALS from me:

The ALS = amyotrophic lateral sclerosis is a chronic disease of the nervous system. The nerve cells are damaged in a way that they can no longer transmit the impulses from the brain to the muscles. As a result, you can no longer control your voluntary movements and the strength and mobility of the muscles is lost in the course of the disease.
This disease is progressive and currently incurable. With supportive therapies, illness-related symptoms (e.g. neck and shoulder tension) can be alleviated.

Drug treatment is used to protect nerve cells in order to prolong their function and to slow down their death. Other drugs are used to counteract individual symptoms.

The tactile perceptions, the consciousness and the intellectual abilities are often not impaired. 

All information, suggestions and reports are intended for information only. They are based on personal experiences and are never a substitute for a doctor's visit. (Disclaimer of liability)

You can find further information on the clinical picture here:


ALS in the personal environment
In order to visualize the meaning / effect of the diagnosis in my personal environment, I asked people from my environment, family, relatives and friends to name terms that go through their heads in connection with my diagnosis of ALS.
This resulted in a collage with exciting statements and an interesting opportunity to compare how this moves the different groups.
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Legend:
violet
yellow pigeon
blue
yellow
green
Family, my wife Daniela and my daughter Melissa (five years old at the time of the survey)
Melissa
Relatives, parents, in-laws and sister
Close friends
Friends
Family
more quality time with Melissa
increasing dependence
challenge
missing complex tasks
assistance
flexibility
changed awareness of values
relief of relatives
lack of active sporting activities
Melissa
can still walk
can still talk
can still stand up
wheelchair to play
Relatives
religious disappointment
life
deep pain
courage
together
not positive
grief
cohesion
no surrender despite all the difficulties
fate
hope
patience
powerlessness
takes a lot of strength for everyone involved
despair
uncurable
Close friends
continuous decrease in independence
steady reduction
positive
self-determination???
loss of life
everything takes longer
fear
loss of independent breathing
Championsleague against all the rules
Friends
wheelchair
Stephen Hawking
strength of will
suddenly and unexpected
dosed strength training
giving up things
family
support
strength
will to live
creeping and insidious
individual course
ambition
courage
environment