amyotrophelateralsklerose

Multisonic medication nebuliser (inhalation, cold)

Pageviews: 854 To inhale me in the morning, it's best to prepare everything first because inhalation is really unpleasant and uncomfortable for me. So get the suction catheter ready, fill the Multisonic, get the mask ready to change, if you were planning to clean the nasal mask (which I put on after the inhalation), then it's best to do that now too. With everything I...

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Micropositioning torso and back

Page views: 656 Micro-positioning may not look like much in the end result, but if it is carried out properly and regularly several times a day, it has a whole host of positive effects: Unless I am positioned elsewhere, e.g. because of food intake, it really makes sense to wake myself up every 45-60 minutes, especially to prevent the formation of solid secretions in the throat and lungs.

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Philips/Respironics E70 (cough assistant)

Page views: 822 For legal reasons, my supplier (Vivisol, see the „Important contacts“ section for contact details) must instruct me on how to use the device. I will limit myself here to the specific application for my particular case. Application As always with work that requires the mask to be removed or opened, good preparation is essential. Lay the tube and mask from the cough assistant on the bed...

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Supine with head to the right

Page views: 632 My typical position for the day. With my head on my right side, I get the best air and feel comfortable. It is also the only position in which I can at least talk a little. Ideally, I am positioned with two blankets on the left and right under my bum (see below). The thin 40×80 pillow goes under...

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Tobii Troubleshooting

Page views: 674 If I could... I would do everything myself. But I can't. Obviously. Otherwise we wouldn't be where we are right now. You wouldn't spend your time reading my confused texts. ? It's all the more important that I put you in a position to get my eye control working again when the system -...

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Storage of my body

Page views: 544 Positioning my body is a fundamentally important part of my care. Regular and correct positioning significantly reduces the risk of pressure sores, pain and accumulation and retention of secretions in the respiratory tract. Especially at night, I insist that you set an alarm clock and reliably ensure that I move to the other side of the bed at least every 100 minutes.

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Update: Burning under my nails

Page views: 545 Hi there, my dear diary, today is going to be a good day. At 5 o'clock in the morning there was a little „misunderstanding“, instead of taking my mask leakage as a call, a leaky mask was once again suspected. It was tightened without asking. Without asking if everything was OK and without asking if I could still raise the alarm...

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Alexa? Do as I say.

Page views: 672 I have a relatively large number of household appliances networked in my home. Many of them can be controlled by voice via Alexa. I've summarised the most important commands here. The heating regulates itself automatically. The room temperature is set for each room and is always kept constant. If you open a window or door, the radiators switch off automatically....

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Storage of yours truly for laptop work

Page views: 629 How to position me for optimum operation of the eye control: I am lying in the most relaxed position for me, on my back, neck 100% straight and only turned to the right (not bent downwards, that only happens when watching TV and lying on my side!) The bed is slightly raised. I also raised my legs most of the time. The...

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Surface and Tobii, alignment (positioning) of the stand

Page views: 596 Aligning the Surface is actually quite simple. In the status monitor, the eyes must be in the centre with a slight downward tendency. On the right-hand bar, the triangle must be in the upper, just green area. Important: The stand and the holder are never adjusted to position the Surface Tablet. And the infrared camera is perfectly aligned. Please do not...

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