"The best ALS patient in the world"
The Imaginary Sick, page 1, P. Ruppelt 2022
Diagnosis
First symptoms in August 2017: frequent stumbling while jogging in the forest, later nocturnal calf cramps and fasciculations. Six months of pointless visits to the doctor followed ("You're perfectly healthy.") until I admitted myself to Großhadern in March 2018. The result after a seven-day inpatient stay in the neurology department: amyotrophic lateral sclerosis (ALS). Today: care level 5, GdB 90%, tetraparesis, lung 0%
Treatments
- Progress monitoring at the Friedrich Bauer Institute
- Neuro-physiotherapy
- Speech therapy
- GP visit
- ENT doctor visit
Resources
- Active wheelchair
- Carbon wheelchair
- Electric wheelchair
- 3x ceiling lift with drive motor in the bathroom
- Bedroom and living room
- Bath lifter
- in the stairwell platform lift
- Care bed
- Anti-decubitus soft bedding mattress
- PC Eye Control Tobii Dynavox PCEye and Communicator on Surface Pro 8
Devices
- Ventilation 2x Resmed Astral 100 (1x active, 1x stand-by)
- Nose mask (day)
- Nose and mouth mask (night)
- Cough Assistant Philips Cough Assist E70
- Suction Vacuaide
- Inhalation Multisonic
- Cannabis Vaporizer Vapormed Volcano MEDIC 2
- Technics SL-1200MK2
Time is precious. Waste it wisely.
Professional practice
Managing director of a successful IT company. Yes, I am actually still working and earning good money.
Preferences
Spending the good money. Buying nice things, giving nice things away, listening to records, smoking, freshly squeezed mango juice, thinking about the world.
Sex, drugs & all kinds of music
Location
My condominium in the historic part of Grünwald, within walking distance of the Isar. Separate room for carers with TV, Netflix, Prime, TV Now, Joyn. Wifi multifunction printer, 100 Mbit WLAN, iPad Air. Sofa, guest bed. Nespresso Pro gastro coffee machine, 2,000 capsules of coffee in stock, 200 types of spirits. 20 square metre covered balcony for smokers.
