Case: Patient Reports

People living with rare diseases have their say

Every day we work together with people living with rare diseases and their families. Through this close contact we get to know their perspectives and gain insight into their everyday lives, their worries and wishes. There is a lot of impressive stories to hear, see and learn about how "the rare ones" deal with their daily challenges and find solutions.
 
With the contributions on this platform we would like to introduce some of these people, share ideas, encourage and inspire. And we also want to share our own experiences and observations. Because some of us live with a rare disease ourselves or are affected parents, partners or siblings.
 
We start with a topic that is currently moving us all: How the Coronavirus is changing all our lives. Sometimes for the better, for example through the welcome slowed down pace of life for many people. But often it makes things (even) more difficult. This is especially true for people with chronic, rare diseases and their relatives. That is why we spoke to Ilona Brandt. She has been living with spinal muscular atrophy (SMA) type 2a since birth. In sixteen articles, she tells us how she masters her daily challenges in the current time of crisis.
 
Take a look and give us feedback. Share our pages if you like what you read, hear and see here. And above all: Take part! Because we are still at the very beginning of our project. Only together with you this will become a strong initiative around encouraging and practical, helpful stories! Do you have a story that can inspire others? We would be happy to support you if you want to contribute your ideas. We can help you create podcasts, videos and articles and make your stories heard and seen through this platform.
 
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Here you can find the interviews with Ilona Brandt: 

 

Assistance

How do you organize care in times of Corona?

"Basically, we do it in a similar way as we have done for decades, by organising the employer model, the care ourselves. The only difference is that we now make very precise inquiries in advance, which we don't normally do. We ask the people who come to the next shift what their last two weeks looked like.
However, the changes are much more frequent, so that we don't have to check with all of them during these two weeks.
In any case, we try to ask every new assistant in advance: How are you doing? Is everything healthy at home or in your environment? We have developed a technique to always ask first-, second- and third-degree friends and relatives. The first degree is of course those with whom you live. One of my assistants stays in a large shared flat. Then of course I mean each of her ten flat mates when I am talking about the first degree. The next circle would then be one of your circles of acquaintances, where you might go despite the ban on contact. They should also restrict this, but you can only hint at it or ask for it. I wonder if everyone does it...? Of course, you can't be 100% sure of anything. But at least you have a feeling for whether it's a greater risk or not.
You can feel it getting closer. You can hear here and there that up to the second degree someone has already appeared as a Corona case. We've also had one case where we've decided that it's already too close. A brother's girlfriend was infected, and they met briefly, a week ago. We said then we would try to rearrange the roster so that we would wait two weeks before she can come back. These two weeks were then of course hard to bridge again. Because we don't have that many employees right now.
We have actually been prepared for a large staff shortage for one or two years. But we've managed somehow. When it comes down to it, you can rely on a lot of people. Some of my stuff knows each other. Then it's also a bit easier to rearrange things. We always try to break it down into pieces, these absences where maybe no one is around. Because me and my twin sister have the advantage of living close to each other and being able to support each other. My employer model helps out when these gaps cannot be seamlessly bridged with my sister.
We are also in practice. This long lead time to cope with staff shortages is perhaps even an advantage now. But still not nice."

 

How do you handle it when someone shows symptoms but has not been tested?

"Especially in the pollen and allergy season, we've had people catching colds. Then you can ask medical questions: Is it an allergy you already know?
You have a body sense. Of course, this is an assessment thing: how far can you trust them? What body awareness does the other person have? We have now also discovered some face masks from some basement shelves. So everyone, whether they have allergy symptoms or not, as soon as they are near us, they have to wear masks. It's no one hundred percent protection, but any barrier that could prevent viruses from flying around will do. If necessary, I would use scarves or towels."

 

Were there any concerns on the assistant's part?

"There are all facets of characters: from very overcautious, reserved and afraid, to not even aware that it would really be a danger. That's where we try to find mediocrity. Everyone is in a limbo there, I notice again and again. So that one actually adapts from day to day, prepares new input and builds a new picture of oneself. That's what the whole population is doing at the moment."

 

How do you organize your lessons without assistance?

"We're more likely to be lying down, in bed. Sitting time is very limited. When we're not out and about – shopping, walking – we're actually always in bed. Because from there we have installed the technology in such a way that we can best do everything from bed and also have much more energy. Hours when we are all alone, we try to minimize absolutely. That is of course always a risky situation. If anything were to happen... Since we just can't lie well, and something hurts – that would be bad enough. But something else can happen as well. So we try it with the technique we have: Keep the computer on so that we can reach someone in case of emergency.
If we are alone for one or two hours – that's ok, too. That can even be quite nice. I always try to see the positive side. That doesn't scare us too much. You shouldn't be so conscious of it: If something were to happen, what could we do quickly? That is to say, nothing at all! So one or two hours is the maximum – we dare to do that. Otherwise we push until someone says, ok... And it's enough if one of the nursing staff – mine or Claudia's – can step in. Then it is enough in case of need, because we are currently together in one apartment, so that we can support each other even more.”

 

How does the search for assistants work in the Corona period?

"Applications are pending. I'm in one of those waiting positions where I know I'm supposed to keep looking. The staff shortage that has existed for two years is not going to go away. I have now cancelled all interviews. Since this week, or next week at the latest, I want to try it for the first time – something completely new for me – to have job interviews via Skype. That's what is of course difficult now. You can't go on like this with your staff shortage and keep looking to stay at a certain level, because everything is paralyzed at the moment."

 

Why did you make a film about the assistant job offer?

"We have now started our first attempts to use a job offer film It was a very spontaneous thing, as many things arise spontaneously from the situation. Because we realized again how difficult it is to find new people through the normal channels: placing ads online in job portals - which in my opinion can never work as well as the former oldschool systems: putting up bulletin boards at universities, dining halls. That worked fine in the past, worked very well. Since everything has been digitalized, you realize that digitalization has its disadvantages.
 
Black boards at refectories have been abolished. You're not allowed to hang it up any more. In any case, it has become much more difficult anyway - staff shortages are everywhere. And then you only have the online possibilities to advertise jobs. And that's when we thought about it, because we are very much involved with technology, if we could just shoot a video together. That was quite spontaneous. We have a lot of old video material, which we have always shot when we are on the road. We do that quite often, when we experience things - do nice things - then we take pictures, nowadays with mobile phones, but also with good cameras. We have always enjoyed doing that. This material, which has been accumulated for years, came to our minds, we could use it in a combination of photos and videos and thus present a small resume of us. On the one hand, this was intended for people who might come across us virtually in these online portals, where they would have to search specifically to come across us by chance. We thought that we would then go a different way and find lecturers who would record this briefly in opening lectures at the beginning or at the very end.
 
It has become a two-minute film. We deliberately kept it very short so that it might appeal to people who don't even know that they are actually looking for a part-time job. That you can trigger it with that, so to speak. And at the same time they can really get a picture of us. That was the idea behind it and that's why we made this two-minute film."

 

How does the job interview take place?

"Of course I have a red thread in my head, which I hang on to a bit. The older I get, the more I notice that I could write down a list of questions. But until now I have always developed it spontaneously in conversation, which is what interests me at the moment. And I also think that I will keep it that way, because I notice again and again that every person is individually different. There are a few main questions that you always ask, of course, but otherwise I'm more likely to be guided by how the person appears, that is, appears. He should rather speak, not me. I always try to make people speak freely, but everything else is rather spontaneous. So I have a relatively boring approach. I've always thought about asking questions from around the corner. No, I don't really do that at all. I am very direct.
 
I once made myself a – very old school – selfmade question paper. It was actually more like master data. So that one has name, address, telephone number, e-mail from the applicant in any case, without having to write down quickly.
 
Then of course I ask about strengths and weaknesses, how the applicant evaluates himself. That's always a funny situation, because then people say: "Yes, how, I don't know, what are my weaknesses? And then I say: "Yes, weaknesses can also be strengths! So write down what would spontaneously come to your mind first. What would your parents or your best friends say?" Then I hope they'll write it honestly. But like I said, it's more like a funny way of approaching this question. Where you pause for a moment and survive, what are strengths, what are weaknesses. Am I honest at all? Am I saying that now? And that's the only thing I have written down about a note at the end of the interview.
 
Otherwise, I ask: What kind of amount of hours per week and month can the person imagine. This used to be a very important question for me: How long he wants to stay with this job. In the past, I didn't even let people who could imagine a job like this for less than a year continue to apply, because it's easy to say that it takes someone six months to become sufficiently familiar with the job to be able to work with a certain degree of routine, which for me is no longer so strenuous. If someone said earlier that I want to emigrate or move away in a year, then I have already said, when I had enough people, "A year is too short for me! In the meantime I've become so that I no longer ask the question. You can be glad when they say they'll be looking for something for half a year. But then they want to go on holiday again for three months or travel around the world for half a year. It has simply become the rule that they have become very short-lived, which makes it even more difficult for me, for us. You hardly have any people left to build up a routine. It's hardly possible anymore."

 

 

Health Care System

What will the care after Corona look like?

"I'm always torn there, what one must prepare for, perhaps. On the one hand, I think that the distraction will be greater again, people will want to travel more, spend more time in their leisure time. That is a huge topic. The fact that even people who are employed want to spend a lot of time in their free time, take a holiday. That this will then also become more. Maybe even more for a short time now, because people probably have a lot of catching up to do.
 
On the other hand, what it might cancel out – that was at the beginning of the Corona phase, I was almost euphoric because I noticed that finally, in the general public, in the population and in politics, nursing as a profession is much more recognised and valued. The fact that perhaps this will also improve the situation, firstly, that it will be more valued and can be better paid. That this may even improve the situation drastically. That many more people will perhaps now enter the nursing professions because they have now seen and noticed that this is actually the most important thing in society. Health and solidarity – society only works if this works. That it might even get better then. That it might even be much easier to get applicants who want to go in this direction because they have realised that this is actually the safe job.
 
Working in the nursing sector is one of the safest jobs at the moment. We always notice this in the people who work for us. They are now really aware of this: they don't need to be afraid that their monthly salary will be lost, that they will only get 60 percent. That the job may no longer be there if this contact ban continues. We cannot choose to pause and wait until all this is over! But the care must be just as continuous for a minute as it was before Corona. You can't get a safer job than that. That's a little bit the hope that this might even make it easier to get people, applicants, interested parties.
 
I was almost euphoric at the beginning. That has subsided a bit, because I think you can already tell a bit about it now: People are scratching their hooves and want to have the contact restrictions lifted immediately. And I think - I hope that it doesn't happen, for a lot of reasons - that people will perhaps carry on just as before. I find that a bit scary if life doesn't change fundamentally. I think it's actually quite a nice state of affairs that people everywhere are slowed down a bit, go downhill, maybe don't have to go on holiday ten times a year, have to travel to all the countries of the world, have to have ten parties at the same time. I don't think that would actually harm society as a whole if things were to become a bit quieter. But in the meantime I believe that many people will go back to the same direction as before. Therefore, we can only let ourselves be surprised and wait and see how we adapt to what is possible and feasible."


What can we learn from the crisis?

"I always think that there is always something positive in every crisis, however bad it is. With Corona, which really is a major crisis, because it is a global crisis, I am nevertheless or even more convinced that many positive developments can and do follow from it.
 
I'm always a bit torn, because on the one hand, when you see the good, the positive developments that exist, when you talk or think about them, you almost have a bad conscience for yourself, because you think, well, that sounds almost trivialized at that moment. Because there are a lot of brutal stories and developments that are not good at all. And you can't be careful enough and can't see it positively. But as I said, there is still a lot of positive things I believe, which you can already notice in this crisis.
 
When the shutdown came, for example, I thought about a lot of things, but this could also be an opportunity for other systems. Just that the environment is now literally breathing a sigh of relief again. And you yourself breathe a sigh of relief, because you notice that when you go for a walk you no longer have to meet thousands of people or put up with crowds, even though you really only want to get from A to B. The environment is relieved and practically flourishes. But also very tangible things that directly affect me: At the beginning I had the almost euphoric feeling that things had changed a bit, that this crisis had finally made it known or made it clear to the average citizen that the health system is actually the most important thing that should be valued. And what one should recognize as the most important good for oneself. Health is the most important thing that everyone has – that is something that should be valued and protected and we should work for it. For example, you quickly notice, and I still believe, that all these nursing professions are increasingly appreciated by the general public and in politics, this whole health issue and the nursing staff are more and more valued. Of course, there is still a lot to be done, so that not only the normal esteem remains, but also that it will soon be better paid or that more attention will be paid to the health system. But I see that, for example, as a great, great improvement, a positive development.
 
I firmly believe in changes in the health system, at least in Germany, but perhaps also worldwide. One can only hope that it will become clear to everyone: We must invest in this health system! That is what is important, not only now, through Corona, but it is always important! But here it became very clear how much savings have been made in the wrong places in Germany, nationwide, internationally and worldwide. Some countries that have just made even more savings in these areas are now the countries that are having to fight very, very badly with it. This should now become clear to everyone: You can't cut back on health!"

 

Isolation

How does the restraining order affect your life?

"Of course, a lot has changed with Corona. But at the same time not so much. Because as an SMA patient, I have to do without a lot of things anyway due to a lack of personnel, which has always existed. For two or three years now, it has been increasingly difficult to recruit experienced nursing staff in my nursing operation. That's why I have this forced renunciation of a lot of activity or a lot of travelling around anyway. This has been taken away from me more and more for a few years anyway. This is not such a change for me at the moment, as far as the general contacts, the ability to travel and celebrations are concerned. So there I have held myself back relatively. I was not a person who liked to be in mass events for example. I never understood that anyway.
 
But if you look at the direct, very close social contacts now, I can already see the difference with Corona. So that I look very closely, much more like before Corona, of course: Who else can you meet? Whether it's your own acquaintances or things that have to go on, like wheelchair supplies or aids. You also have to meet strangers and let them get very close to you. I have to think very carefully now: Which contacts do I make? Because of Corona, I try not to let strangers get very close to me. Because you don't know: Who could, would, bring the virus with them?
 
Unfortunately I can't do without it one hundred percent, because my need for help is actually one hundred percent given. I can't even scratch my nose because of the muscle disease, I can't drink, I can't eat. Of course I have to let strangers get very close to me all the time. I am lifted, I am carried, I am given food, I am fed. And of course I always have the people very close to me. That of course makes it complicated and I have to look very closely now. Of course, if I could, I would limit myself even more, but I cannot. I would also prefer if I could avoid even more contacts.
 
I think that as a normal person you have this in your hands very well, because you can reduce it to a minimum to get infected. Unfortunately I don't have that choice. That is more or less fate. I cannot influence it one hundred percent – maybe ninety percent. But I believe that ninety-nine percent of normal people can prevent an infection. For example, I would have used masks a long time ago to go shopping. Of course it is also difficult to keep your distance when shopping. Wash your hands immediately afterwards. Well, I think you can reduce it quite well. Everyone has to participate and that's the whole point."

 

Risk of Infection

Infection risk hospital – how do you deal with it?

"Since I have been fortunately in this Spinraza treatment for a long time, it is necessary to go to hospital every four months for an inpatient stay, which of course now in times of Corona gets a completely different meaning and preparation. I am now for the first time before the next Spinraza treatment, which now falls into this Corona time.
 
Of course, I am thinking: How risky is it to go to a hospital at these times? But first of all I think the routine is now more or less given in the hospitals. I also think that you are now in a phase in which the health care system is fortunately not overloaded, that you can separate the cases that are sick and their employees in the hospital, that they have their own wards or maybe even their own buildings, that you can actually be relatively sure, I think, to go to the hospital at these planned dates. Sure, you can't be one hundred percent sure."

 

Ventilation

Since when and to what extent have you been concerned with the subject of ventilation?

"Since the respiratory musculature is actually limited from the beginning due to the basic disease SMA, which I have, I have been dealing with the topic of ventilation since I, we, that is, together with my sister, are fourteen years old, I think. We have already noticed that this is and will be an important topic. And even then, when we were fourteen, or at the latest when we were twenty, we made a very specific effort to obtain information. At some point, when we were twenty-one, I founded the Ventilation Association together with doctors, which incidentally is now the basis for a nationwide, very established – it is no longer called an association – association which is very active and which meets annually with thousands of participants and doctors and tries to disseminate knowledge and findings.
 
Ventilation has always been a huge topic for me and I also had a job, a project position, in the field of ventilation in Oberhausen for a few years. So it is actually a permanent topic. Professionally and privately, so to speak, out of the SMA. At that time, I was a founding member with my twin sister and performed together with a few doctors. The association is now called DIGAB, which is the "German Interdisciplinary Society for Out-of-Hospital Ventilation". Together we have seven, eight members, two, three, four patients, including myself and my sister and a few doctors who already had a lot of knowledge about it back then - we founded the association and it has proved very successful.
 
Since I was twenty, at the latest thirty, the values - you can measure corresponding values, respiratory strength values and other values that show you a little bit, when it becomes important to let your breathing pause, to give it a rest. At the age of twenty or thirty at the latest, it was clear to me that the respiratory pump, as they say metaphorically, is already at its limits in normal everyday life.
 
Since then I have had a ventilator, which I now use only when necessary, because I am still relatively well and I know what I have to pay attention to. I could also use it more often now. It wouldn't hurt to use it every night. But I only use it when I need it, when I really notice that I am overexerted, overloaded. When I am sitting, I find it a bit harder to talk and breathe due to gravity alone – then I use it when necessary. I don't have regular times now – my sister does, for example. I actually do it very individually. But because I think I have a healthy feeling for it: When is it advisable for me to start using it? I don't do it regularly, it's not necessary for me. If I would do it regularly or in times of crisis when I have a cold, when I use it, then I use it for example always in the evening while watching TV for two or three hours or even overnight while you sleep. It's very restful, because you really sleep more restful.“


Why is the subject of ventilation so important – generally and especially in times of corona?

"The connection is that the respiratory muscles are also affected by the SMA and you are doing an endurance run virtually the whole time without interruption – you can always imagine it that way. If you do this for years, your breathing is also impaired or overloaded to such an extent that it is possible that you catch a cold faster. Or if you have one, you will finally decompensate and can no longer cope with small colds, with a small cough. That is why ventilation is important, and the last twenty or thirty years have proven that it is a very important issue for people with muscular diseases.
 
And by the way, this is not only true for SMA patients, but really applies in the broadest sense to all patients who are somehow involved in muscle overuse – that is a big, big clientele. There is a secondary ventilation, but a fully controlled ventilation, overnight is best, a great help to give the respiratory muscles at least a breathing break in between. And the respiratory musculature really recovers through this and is then somewhat better usable again for normal everyday life. This is a very rough description of this therapeutic ventilation – not intensive care ventilation, many people are afraid of that. This is now also a topic at Corona. It's more about therapeutic ventilation, which can also be used with Corona. So these two topics are very closely related.
 
I can only recommend that every patient try it. Because that's something you really have to learn. You have to be able to not breathe with them. It makes sense that you don't breathe at all during that time. You can learn this very quickly. Well, I learned that within ten minutes and I know many other patients who have weak breathing muscles. Once you explain to them exactly what is important, you can practice this very quickly and learn to do nothing. That is actually the trick, that you learn not to use the respiratory muscles at all, that is, not to do anything at all. Only then does it make sense to use the ventilation that I am talking about now.
 
Even more, if it is about the topic of corona, as a risk patient you should really deal with the topic for good. Because if it came down to it, because you were infected with corona and you had to go into the ventilation situation, it is of course a huge advantage if you are already familiar with the subject. If you have perhaps already done this normal, non-invasive therapy ventilation - that is why you are already familiar with it. I am very sure that in the case of Covid disease you can absorb a lot if you are already familiar with ventilation and have already practiced it.
 
Breathing patterns are pre-programmed, which imitate your own breathing, both in terms of depth of breath, frequency and volume. So you breathe for you. And if you adjust this well in advance, it depends on the respiratory physicians – there are some and others – if you do these settings well and then start the first attempt with a nose mask, you can learn this very quickly. Then the anxiety will be gone very quickly. It is nothing bad. It is always very frightening when it is strange and you have never tried it before. From there: I can always only recommend to try it out.
 
I have my own ventilator, which could ventilate me completely, even in case of unconscious ventilation. That is still the big difference: I am talking about awake ventilation right now. What is unfortunately done far too often in Corona times – but you can't get around it when you are badly affected – is ventilation under coma conditions. Well, they are artificially put under anaesthesia to get an invasive ventilation, because otherwise you couldn't stand invasive ventilation. With a tube in the windpipe or in the lungs, nobody lies still. That's why they are put under anaesthesia, but that's exactly where the danger is that ventilation can become dangerous. You have to look at it very differently.
 
From the media I know of course that ventilators can become scarce in number or, unfortunately, have become very scarce in other countries. This has not happened in Germany. So it seems that we are still in control, that ventilation places, if we needed them, for patients who really develop complications with the lungs – here in Germany we do not have this shortage of ventilators. You see brutal pictures all over the world. Ventilators are now more important than ever and ventilation experts are more important than ever.
For example, I have my own ventilator, which could take over the ventilation completely, even in the case of a complete sedation, so that I would have to be put under anaesthesia, and even I could be completely ventilated with this device. This is exactly what I do when I am awake and let myself be ventilated. These are the same settings that you could use for coma ventilation. Therefore, I certainly don't have the problem if it would come to the fact that a device would be missing on me and therefore one could not continue. But in the general world this is a big issue. If you have to be ventilated and invasively, which the severity of the pneumonia makes it necessary to put you under anaesthesia, then it is of course a bitter pill to swallow if there are no devices available and no experts who can adjust the settings.
 
This is precisely the huge problem: These experts, who have been working for decades in these respiratory associations on non-invasive ventilation, i.e. with the patient awake, should – and this is something that has been burning under my nails the whole time – be consulted now to see whether it would not be possible to draw on the experience of Covid patients."


Does the ventilation also have disadvantages?

"There are no disadvantages in that sense. Well, I'm not talking about invasive ventilation, i.e. not with any kind of surgical measures, tracheotomy or the like, but about ventilation via a pure nasal mask, which you can also take off again and then everything is the same as before. However, I do know patients and cases with this non-invasive ventilation – which is always the better choice than invasive ventilation – who have to be ventilated non-invasively for up to sixteen hours a day because they are simply impaired.
 
And even then, there are no disadvantages in this sense, no irreversible side effects. So the biggest side effects are sometimes pressure points on the nose. If you have had a nose mask on your nose for sixteen hours, this can cause pressure sores or you can get air into your stomach instead of into your lungs – depending on how you are ventilated at night, this can happen. But these are not serious side effects.
 
Where many are also afraid of, is that you get so used to the ventilation that you forget how to breathe or your muscles weaken. That is complete nonsense. You can take this ventilation away again at any time. And your own respiratory muscles will be better again in any case. It does not become less. There is no habituation effect, which some people fear. Therefore: With this non-invasive mask ventilation you can't really do anything wrong.
 
It is a little annoying because you have something on your nose. So eating and drinking is not so well possible and as a beginner you should rather leave it alone. I can even eat, drink and talk, but it is of course annoying if you have something on your nose. Therefore it is more practical if you do it overnight. Or if you're watching TV and you're quiet, you can do it on the side."

 

Supply of Medical Aids

How do you currently regulate the supply of medical aids?

"I have a wheelchair provision that's been pending for a year now. Of course, this is going to take much longer because we have to think about it carefully: Where and in what situations do you make appointments with medical supply stores, technicians who have to take measurements, where you have to go for test drives in a wheelchair, where you have to put your hand on a joystick, which I can't do. Of course that has become more complicated. Everything that now has to do with the supply of aids or repair measures or now with the supply of new wheelchairs. Because the wheelchair is now ten years old. That is very, very, very old for a complicated power wheelchair. I am now, stupidly enough, in the time now with Corona in an absolute dilemma. Of course it's going to take much longer.
 
I make new decisions almost every day: Where do I make an appointment with technicians? Where do I wait another week or two? At the moment I'm working on the subject of aids, and now I'm particularly interested in a new wheelchair, which has actually been on the cards for a year now and is already underway. Every day it's a decision on a case-by-case basis as to which step I should take and when I should go further. That is difficult. So I really do decide almost every day: Do I call a technician now? These are usually only very short appointments. Sometimes I would have to spend half an hour in the workshop to try out a wheelchair. Or do I let someone who would have a test wheelchair with him come to me for an hour? But close contact is also important, because the armrest position has to be adjusted so that I could even take a ride in a wheelchair. You get very close. This is always a decision made on a case-by-case basis. It is always a matter of weighing things up: Does it now make sense to wait two or three weeks, to take the next step or can you work with measures such as Gloves, if possible let the air out while you're doing it, let the air flow through or maybe even sit outside in the sun to get a technician to come.
 
In any case, one is trained in additional patience. Unless you are a Kamikaze driver and would still let all appointments take place. But even the medical supply stores and technicians are only half staffed. Even now you don't get any appointments in the normal schedule. I try to take a middle course: If I can get appointments, I try to keep them to a certain extent and not to postpone them into the future from my side. Because the future can take a long time until something really calms down and you could be on the safe side. That is a gut feeling more or less. Gut feeling, individual case decision, weighing up, with a lot of sense of proportion, making appointments, discussing when people are coming, using maximum safety precautions.
 
I have a broken wheelchair, which I should have had a new one for a year now and now I have a broken bed, a nursing bed, in which I have to move a lot because I can't sit well. Now I really have a problem: Thanks to Corona I have to be very patient with many things and improvise a lot with broken aids. I'm already used to it, but to have such a double improvisation with two basic devices – that's almost slapstick, but that's life: It writes weird books!"

 

Flood of information

Information overload Corona – how do you deal with it?

"One problem that I think everyone has now is the amount of input that you get on your own. I can't really listen to the radio or TV anymore. Because there is always information every minute, every hour, partly contradictory, partly fake information - you have to sort it out for yourself. So this is immense! This flood of input that comes like this is not good in the long run.
 
In the meantime, I do it this way, actually after one or two weeks, I have noticed that, for example, I listen to the radio on the side while working or when I am in my free time or watching TV in the evenings, that I only do it very specifically. That I don't let TV or radio run on the side, because of course you always listen: What is this info? Is it relevant or not? I try to limit myself to "real news" twice a day. Once in the evening one or two good TV stations, where I know that the information is well prepared and otherwise to avoid that. As a layman you can't process and filter this amount of information for yourself and handle it accordingly. So you simply have to cut back.
 
Sometimes it doesn't work at all. You can't protect yourself from these input floods. Just when you meet other people, such as when you change care assistants, you naturally exchange what you have heard about new information and changes during the day. In any case, you have to talk a lot the whole day, whether you want to or not, think a lot, compare a lot, filter a lot. And that fills a day like that, by the way. Of course, it is clear that everyone is talking about it. It is very dynamic. That's why the flood of information is also very dynamic.
 
On the one hand I can understand that. On the other hand, I don't think the media should have the right to tell every minute of every radio show what the latest knowledge or the latest information about any regulations was an hour ago. I would like to see the media coming down a bit with the passing on of information, so that it would really be limited to one, two or three times a day. I think that is something quite crucial, and it makes the stress even greater, which you have anyway because of this insecure situation, and you do not know what else is in store for you.
 
Almost ninety percent of the day I already spend my energy talking about what you have just heard about Corona or what needs to be taken into account again in the near future. One exchanges oneself constantly about it. You are forced because you want to do everything good and right yourself. I would have thought myself that it would be quicker to get used to the fact that you can slowly and fifty percent normally go about your everyday life, but that's not really the case yet."

 

 

Ilona, SMA-patient (type IIa)

Internal Patient Engagement Roadmap Workshop

The client wants to better understand and evaluate the ROI of potential patient engagement activities to initiate

Mapping the Patient Landscape

Understanding the major players on the national or European level

Understanding the Patient Pathway

The client needs to understand the needs, challenges, everyday life, preferences, and hopes for the future of families affected by a rare, genetic disease.