I'd like to be more clever, because some of the things I've said here are simply not true, but some people are already bored with my drivel. I'm happy to engage in discussion via PN or elsewhere, but it would get out of hand in the chat. In this respect, I hope you all have a peaceful evening.
Several of my posts in the various ALS communities could look like this or something similar. It's nothing personal either. But well, you don't want to step on anyone's toes. It's just that some rumours about ALS are so persistent and just dangerously wrong that I try to clear them up for those who are seriously interested. And not just post wild claims about alleged horror stories on the net. Without evidence, without witnesses, without medical records. And what crazy stuff is written. It's scary. In the end, someone will believe the rubbish. The internet is truly a dangerous place.
People keep asking for medical advice in forums and chats. Often from very dear people who have noticed countless symptoms for weeks, months and years, yes, years, and are sure they have ALS. Or something even worse. By the way, I'm not quite sure what could be worse than ALS that doesn't rob you of your ability to walk, talk, eat and drink or even trivial things like being active on Facebook all day, even after years. But well, another topic. At least everyone agrees that they suffer from breathlessness. That's why I'm taking up this topic today, perhaps to bring a little clarity to the chaos of opinion. First of all: breathlessness is bad. In my opinion, breathlessness and the associated panic mainly happen in the head. I know I'm not an expert. What do I know? Let me put it this way, if you explain to your carer with an oxygen saturation of 78 that you have an oxygen concentrator, the carer in her panic doesn't manage to press the only button the device has... you tell her to please dial 112... and you tell the team of two ambulances plus an emergency doctor on arrival - quote, there are a lot of witnesses who didn't find this funny for whatever reason -...
Can someone set the O2 to five, please? And then take a coffee, Red Bull, Aperol and good Prosecco are in the fridge. I'll be fine in ten minutes.
Then we're talking about the same thing. Everything over 80 is kindergarten. None of them will go to the dogs. So don't panic on the Titanic. Spoiler: the story with this nurse was with another nursing service. But I still drop to 80, 82 sometimes. It can happen and it's unpleasant at the time, but it's no big deal.
If you have landed on this page because you are also looking for advice about your breathing problems (especially with ALS or V. a. ALS), let me tell you one thing. The best person to advise you is a neurologist who specialises in neurodegenerative diseases and works in an interdisciplinary team with pneumologists, among others. They do a blood gas analysis (ABG) and at night an end-expiratory CO2 measurement (so-called capnometry), which is used to determine the CO2 saturation during the course of the disease. In this way, the cause can be determined and treated. For everything else, you might as well consult a crystal ball.
Interestingly, in the same breath as the search for advice, one's own self-diagnosis is actually always mentioned. And the required aids are mentioned at the same time. The patient should not go to the doctor and say what aid he needs today, but follow the doctor's advice on the treatment of the symptoms He can judge what the right treatment is. Maybe a cough aid is more suitable, maybe ventilation, maybe expectorant medication is enough for the time being. So basically, many of these questions on the net are not about seeking advice, but only about confirming one's own assertion of how ill one is. And honestly, it's a bit annoying.
I just had a case in which I made countless constructive suggestions as to where the person affected could get specialist help. I even provided contact details for an ALS outpatient clinic in the area where they lived. The only reason the whole thing failed at first was that you couldn't get a referral from a neurologist because you hadn't even been to a neurologist yet. Sorry, anyone with a serious problem like ALS would go to four neurologists before being sent to hospital, as I did at the time.
And then there is the issue of medication and aids. As described at the beginning, many different factors usually have to be taken into account and only a well-trained team of doctors and therapists can do this. Interestingly, opinions are divided when it comes to oxygen. There are those who demand an oxygen concentrator on the same day without any diagnosis. And the others who tell the wildest lies that oxygen would kill the ALS patient. Sorry, but once again, simply no. I have been practical proof to the contrary for years. So let's clear up the three biggest old wives' tales about giving oxygen to ALS patients.
1. no hospital administers pure oxygen, except in special cases such as an operation, during which a patient requiring ventilation cannot be ventilated. When the PEG was placed, I had to be intubated. As is the case nine times when the PEG is placed. Somehow the thing has to get into the stomach. Now, stupidly, it works a bit hard through the intubated throat when a mask is stuck on the mouth and nose. So you pump the patient up to 100% saturation with pure oxygen and can operate without ventilation for quite a while.
2. the administration of oxygen does not put you under CO2 anaesthesia. This happens due to lack of circulation. The body is constantly converting oxygen from the air into carbon dioxide. Whether it is 90% oxygen saturation in the blood, or 98% does not matter. As long as the carbon dioxide is exhaled, everything is fine. But if the lung muscles can no longer breathe out properly - e.g. because of ALS - it becomes problematic. Then CO2 poisoning can occur. It doesn't matter whether you are on oxygen or not.
3 Of course you can give O2 to an ALS patient. Same thing, as long as enough CO2 is exhaled, there is nothing to be said against it if necessary. An oxygen concentrator usually only supplies one to a maximum of five litres of O2 anyway. If used correctly, this is completely harmless.
If you want another tip, I have a video recommendation for you. You can control your breathlessness much better - and I'd bet a lot on that - if you learn how to breathe properly. And by that I don't mean the rubbish that your respiratory therapist tells you, but simply effective breathing like divers do to stay underwater for ten minutes on a single breath. I can easily manage an extra 30 seconds until my saturation drops from (today I tried 96) to a non-critical 92, even though I'm breathing fully and have 0% lung function. Without any aids and free of pharmaceuticals. A measurable fact. You should give it a try. Even if you don't have breathing problems, it's an exciting story.
