Is someone saved from motor neuron disease
The new features
There were also situations that were shitty, but easier to take with a sense of humor. So I remember an incident where an elderly, lovable gentleman, certainly a grandfather or probably great-grandfather, was walking down the hall with two physiotherapists. He practiced walking on the rollator and was very insecure and frail. I've forgotten his name, but not his sense of humor. I want to give him the name Müller here. There was a conversation with all the senses, which I couldn't avoid acoustically. The physiotherapist behind him asked "Mr. Müller, can it be that you pissed your pants?", Mr. Müller stoic silence. Then the therapist said to him, take a look in your pants and lo and behold, you can rely on her nose. Then she asked Mr. Müller if he wouldn't notice when he had to go to the toilet. He answered the question briefly with "Yes", while he continued tripping on his walker and she asked him slightly indignantly why he hadn't said anything, you could have headed for the toilet. After a perfectly chosen break, Grandpa Müller took the final shot and said "It should be a spice".
After we had overcome the first shock and the tears had been used up to howl, it was time to collect ourselves. Determine your own position, make a plan, execute. The most important thing is not to forget about life. I quote “One day we all have to die, Snoopy”, right, “and all other days not”, right and wise. Easier said than done, but self-pity is not a solution either. The real tragedy is not my supposedly premature death and how I will be until then, but what grief and pain is associated with it. The unspoken words, the missing hug, the shared moments of happiness and everything that makes memory of Dad, for which, measured against what was to be expected, but the time is missing. What remains is the memory. All joy is or is based on memory. What will my son remember, who was his dad, how can I accompany him on the way to a good person? Perseverance is the order of the day and every day is filled with love. Everything is infinite for the little man. Life, his parents' patience, the availability of gummy bears. At some point the day will come when he will find that nothing is infinite and that some things cannot be replaced. We are now practicing this with gummy bears and filling it with unconditional love until then.
Life cannot be planned. If we plan today, we will drive on sight. Since we cannot estimate the development of the disease, we plan for the short term. Since the first symptoms there have been constant changes. There is hardly any time to get used to a condition. There are regular feature updates. Function extensions that nobody needs. ALS has a lot of unnecessary innovations to offer. I'll only mention those that concern me: There would be constant muscle twitching. Now everywhere. Annoying at first, but at some point you can ignore it. My muscles twitched early on. Cramps too. Gladly in the calves and thighs. Optionally somewhere else. And here, too, it is more the connoisseur number, because the intensity is unparalleled. In such situations, I meanwhile limit myself to a low and appreciative groan. If I were to express my displeasure out loud instead, the pain would not be less, but it would burden my surroundings more. Increased salivation and spasticity are also enchanting. Extremely conducive to appearance. But what was really special was the update with the pathological laugh. Basically, this means an inappropriate emotional response. I laugh even though I don't want to laugh. Quirky crap. Fortunately for me, it usually appears as a suitable emotion, albeit exaggerated. In situations where I used to only smile (inside), today I have to laugh like Papa Pig. This can lead to very uncomfortable situations. But even in helpless situations I have to laugh from time to time, which is very annoying. Because while I'm laughing, nothing else works.
Of course you can bombard these side theaters of symptoms with medication, which I do in the case of spasticity and cramps by taking muscle relaxants. All other symptoms are usually bombarded with psychotropic drugs. For example, the side effects of these drugs make your mouth dry. So far, I have refused to use them because I'm afraid I will face further problems. It took a while before I wasn't too annoyed about my own appearance and its effect on my surroundings. I am what I am. And to comply with the general norm is a compulsion that only happens in the head.
So far, my muscle wasting has remained completely unmentioned. I've lost over 20 pounds in two years, but I've been maintaining my weight for a few months. My arms have become poor. This means that I am constantly dependent on outside help. Toilet, washing, getting dressed, drinking, eating, scratching, nothing can be done alone anymore. Nothing. That's not true. Almost nothing. If my hand is placed on the wheelchair control, I can drive from A to B independently. Other aids also allow me to compensate for the losses somewhat. Stair lift, fully automatic toilet, voice computer, eye control for the normal computer. But only a fraction of the old dancing bear remains, physically. Until two years ago, my wife and I had a ritual. We danced together in the kitchen every Sunday morning. Without having had a beer and no matter where the house blessing was hanging around. I can't remember the last dance. It must have been a brace blues, nothing more was possible. I think we both knew it was finite, but not that it would be the last dance of our lives together. That brings us back no aid, just a miracle.
The voice computer has recently become an important tool because language is gone. My voice is now called Klaus. ... Christian's voice was nicer and Christian could sing better.
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