metronome
New member
- Joined
- Dec 19, 2017
- Messages
- 4
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- DE
- State
- Baden-Württemberg
- City
- Stuttgart
I have familiar ALS with the C9ORF72 mutation. Progression is pretty quick, since being diagnosed in February 2017 the symptoms developed from not being able to lift my right foot to the current stage of not being able to walk or stand, not being able to lift my right arm and hand and the onset of bulbar symptoms.
That said, my life is still pretty comfortable. I still eat what I want, struggling only with big pills. My back is killing me though. Because I'm constantly sitting my lower back is hurting when I stretch or somebody lifts me. I'm guessing the muscles are atrophied. However, using liquid painkillers helps me to sleep a few hours until I decide to turn to my side and suddenly find myself in an uncomfortable position. This then activates dark thoughts about everything. My life, my decisions, the things to come with the progression, what my girlfriend must go through and doubts about what happens to our relationship. I know that these thoughts are not to be taken too seriously but at night they are all I have. Apart from the fact that I am in some very complex, painful and unwanted Yoga position, I have all these thoughts and would just wish for a peaceful night.
That said, my life is still pretty comfortable. I still eat what I want, struggling only with big pills. My back is killing me though. Because I'm constantly sitting my lower back is hurting when I stretch or somebody lifts me. I'm guessing the muscles are atrophied. However, using liquid painkillers helps me to sleep a few hours until I decide to turn to my side and suddenly find myself in an uncomfortable position. This then activates dark thoughts about everything. My life, my decisions, the things to come with the progression, what my girlfriend must go through and doubts about what happens to our relationship. I know that these thoughts are not to be taken too seriously but at night they are all I have. Apart from the fact that I am in some very complex, painful and unwanted Yoga position, I have all these thoughts and would just wish for a peaceful night.