Do what is possible

For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought any results.

The initiator of the action was a mobility study, where they rejected all of usl there. Because we are all MSA-C, and the target group of the study are MSA-P-patients. Now we’re doing our own little study, and we’ll see if it’s any use.

What can I say after two weeks?

First of all, this group feeling is good. Sometimes it’s so hard to overcome your inner weakness. If I didn’t have this group feeling, I would hole up on the couch here and there and do nothing. But I don’t want to embarrass myself in front of my fellow members, so I get up and do my stint.

For me the first days were hell, it was rather worse than better. It was also scary to actually realize how bad I had gotten. When you don’t do so much, you don’t notice how fast you degrade.

So slowly now the whole thing is making itself felt. Less pain, one is more flexible, fatigue better. What remains is the bad balance. And you still have better and worse days. Sometimes you do the whole thing with a lot of verve and a lot of strength, sometimes you have the feeling that you are a balloon that is half empty.

The whole thing also makes me realize what has become of me, of my life. Four years ago I was living life to the fullest, running 12 kilometers in an hour, doing yoga, kite surfing, EMS… and now I can barely walk a few hundred meters on a rollator. Every little step, as well as from the couch to the fridge, or at night from the bed to the toilet – everything is at risk of falling, which can mean a fracture or strain, which can affect the course of my life. What I do now and call exercise wasn’t even worth paying attention to recently, and was laughed at by me.

Before the diagnosis – 2017 on the way to EMS
After the diagnosis – 2019 running up and down stairs – where it still worked without help

The other day I saw a program on TV about cancer. And celebrities who have successfully fought against it. Cancer is also a vicious disease, no question about it. What I would be happy if I had a chance to fight. The stupid thing about this disease is that the outcome is inevitable. And you have to digest that once. This finality is so hard to accept. I would like to fight so much. But for what? For two days of life extra that I may live undignified? Is that a meaning? Anyway, I do and do as much as I can, even if I don’t necessarily know for what. Maybe this way I stay mobile and self-sufficient longer.

It’s hard to motivate myself every day. I get up in the morning, and I think “Again?”. 

I would like to be more present. We and our disease is so invisible. That someone speaks for us. Because in the meantime I can’t even speak for myself because my language is so stupid. 

Anyway, as long as I’m still here, I’ll keep going. And if the disease takes away my ability to act independently, I’ll leave voluntarily.

The final result

It would take a few days to realize. Out of the dream…
A few days ago came the press release from Biohaven itself that the drug is unfortunately ineffective. I was a bit surprised about the timing, we in Europe are a bit behind. However, I was not surprised by the whole thing. So now the dream is over, it would have been too good to be true.
I still have to understand what that means for me. I have definitely become worse in the last few months. So the plan to gain time with Verdiperstat didn’t work. First of all, I didn’t freeze the condition of that time and secondly, nothing was invented in the intermediate state that stops the progression.
The current thing that exists now will slow it down. If it goes well.
Still, the statement is like a punch in the gut. It was a glimmer of hope to buy time. True, there are other remedies and new studies – research continues thankfully. But for me, it’s already too late.
I was thinking the other day about what it would be like if I were magically healthy again. Everything to zero. There is hardly anything left of my things. I gave everything away, donated it, sold it, threw it away. I don’t even have a car and hardly any shoes or clothes. No kitchen utensils, no grill, no hammock and no lawn mower. No job and my apartment is also one I wouldn’t want as a healthy one. I don’t even have hair. In any case, it would be a completely different life. Maybe I would go into a monastery? Or write a book? In any case I would have to start from scratch. Not so bad.
Now I see that most people waste themselves on unimportant things, spend their money on nonsense, waste their time.
I see how my own life now consists of little highlights. Happenings I wouldn’t have even noticed before. Cake and coffee (as old women like it), a visit, an appointment… What is the important thing in life?
I think people should understand that they do not have unlimited time. That mistakes and dissatisfactions must be corrected immediately, not tomorrow. That you have to correct them at all and not accept something that is not good for you. That you have to dare to leave your comfort zone. We have one chance. I have thought a few times, if I could live again, I would be much more selfish. Think about yourself first and then about others. Who these others are doesn’t matter at first. We women in particular tend to put our own lives on the back burner for others. This has even something heroic. One has sacrificed oneself for someone. We must learn that selfishness is not evil, even if the word itself is negative. I think you would have to invent a new word here. To pursue one’s own interests and further development.
Because at some point the time is over and I am left only with my experiences, my stories.

Translated with www.DeepL.com/Translator (free version)

The long farewell to my voice and the stadium

Somewhere in the parental cellar it still be, my first recording, where I
sang full of fervor. 2 Little Italians was one of my favorites
I was 3. and this is probably my first memory.
I learned to speak in Kuwait. My first words were bilingual
” Yallah ” I shouted with growing enthusiasm from the balcony, urging everyone to hurry or move on.
That sang with 8 in the children’s choir, as a teenager there were nevertheless these Textheftächen: TOP- Schlagertextheftchen, they also helped to learn English.

I never have a loud or dark voice, even if in the stadium a besondres loud
Lehmann”.on Michi Trippels announcement: “with the No. 33 Mathias” followed. Or I me. about a foul play of the opponent with a Heeeeyyy. echauffierte.
On away trips where with the largest “choir of Cologne” 90 min was sung through. Or at night on the streets of Mauritius to the guitar John Denver and Phil Collins was warbled. Well, I always liked to sing.

With time my voice became quieter. For the first time it struck me that at the bakery at the counter the saleswomen have asked more and more often annoyed. You don’t have to worry about that at first.
Only when the first speech therapist said that we must also work on the volume, it penetrated my consciousness.
This LSVT has exercises that I have a hard time with.
I have inhibitions to shout AAAAAAA s loudly. Initially I could do it for 30 sec, now I am happy with 10 sec. This was more often my problem at work, I had to learn to shout louder in emergencies.

In the meantime, speech therapy is more strenuous for me than physio. After one unit of speech therapy nothing is going on. Not that anything else takes place, but without logo I can whisper even louder in the evening.
I can no longer cough willingly and I clear my throat more.
For my voice I bought a voice amplifier and a speech computer with eye control is requested. When it is really bad I use an app on the iPad.
Even if I can no longer talk on the phone or only breathe individual words into the phone, as I did the other day with my physiotherapist, my new iPhone arrived today 😎and the weekend before last I sang along with the anthem of the Effzeh without a voice. I was the first time this season and probably the last time in the Müngersdorfer stadium.

There was a wheelchair seat O4 height center line and Marga sat for free in the row in front of me.
So close to the pitch you can smell the grass and I always find it smells particularly fresh.
The Effzeh makes joy at the time, it was a great game.
But a long day, a late game and an uncomfortable wheelchair, brand health “insurance”, were to blame for the fact that it has missed me on the doorstep.
I managed to get up 7 steps and the rest of the way I was carried to bed step by step. You can’t expect anyone to do that.
So I will sing the hymn from the armchair without a voice.
Because I have always sung with pleasure.

My sister not my nurse

The other day my sister said to me, when I denounced a wrinkle in the pad: “Jesus Christ, until one has you once in bed”.
Only to the correct assessment, we speak sometimes , something läppsch with each other, which makes many things easier.

Hardly pronounced, they all ran in front of my mind’s eye up and down, the ladies and gentlemen who needed a little longer until everything was as it should be.
I never wanted to become like that – bad luck.
I could understand them, said ladies and gentlemen, so about, the only thing I can still control and so. But well. It was a bit embarrassing
Depending on the day, I need when going to bed, sometimes more or sometimes less help
. But it is definitely always an adventure. There is something to climb, something to roll, something to slide, something to hold and something to push. If it goes well, it takes 10 min, sometimes 20/25 min.

Even if that reads easy and fluffy, I imagined it rather differently. And I think my sister too. Wrong thought.
I do not make nonsense. I am not demented.
No, I am not demented and I also want to have control over myself and my life for as long as possible. And there’s the rub.
After all, you don’t want to do more work than necessary.
I know I have often forgotten my illnesses, been careless
I’ve been careless, I’ve worked until I really couldn’t, I’ve lived alone until the falls ended with a visit to the emergency room.

In my imagination, about the course of MSA, I skipped this time of transition, this time where the people around me were mainly
in a stooped position. Sometimes without but mostly with rags.
This transitional period where one becomes more and more dependent on one’s environment due to increasing lack of independence.
At the beginning I could still help. I did the menial work in the kitchen, that’s what we call peeling potatoes and vegetables, I plucked weeds, and I was able to go shopping alone,
which was not always nice, because your fellow men see only what they want to see. And that is a staggering woman in her late forties who is much too slow at the checkout.

Meanwhile, my sister has to replace my feet, so to speak, because I can’t walk so well anymore….
She brings my pills, drinks, meals, and even my craft supplies I can no longer fetch on my own. It took me a while to internalize that and it doesn’t make it easy. I also get the crisis when people call her my private nurse. She is my sister! And MSA is not exactly pleasure tax.
On top of that, I probably won’t be able to climb stairs that long.
That is nevertheless everything k…since also the thing with the stair climbing assistance (scalacombi) does not function for structural reasons, likewise no Lifta fits into the stairwell.
I feel like Rapunzel only without a Prince

To accept?

I ask myself again and again the question whether one can accept this condition ever. Through conversations, the topic now comes up again. Others say, they have the effort to accept the disease to be able to close, to live on. One also takes help from psychologists, social workers or other trained experts. I also had a psychologist at the beginning of the disease, but I have to say that the whole thing didn’t really help me, it only upset me, often the whole day was in a mess afterwards…

Now I am about two and a half years after the diagnosis, but I can by no means say that I have accepted the condition. The thought still fills me with rage as on the first day, I still miss my old life, I am just envious of other people who go about their everyday business as a matter of course. Working, dancing, wearing high heels, biking, driving, going on vacation, shopping, just carrying a bag or walking from A to B, everything I would like to have.

Of course, the degree of suffering also depends on how old you are and in what condition. What can one still do and what not.

You “take” this condition, because you have to, there is no choice. But to accept? I don’t know if I ever will.

Dreams are quite nasty. I dream simply to cross a yard. It’s easy. After I wake up, I think, I have to be able to do this earlier. I learned to do this as a kid and have done it all my life. So what’s the problem? That walking can be so difficult doesn’t make sense to me at all – rationally.

Do you really accept it? Or do you do and say that for the sake of your family and loved ones? I remember when I visited my family in Hungary, I always showed “the best version” of myself, I tried to get things in order and I acted so enlightened and fearless “just made the best” out of the situation. I wanted to spare my relatives and not scare them. Of course I make the best of the situation, but that doesn’t mean that I have accepted it, I hate this reality, like I did on the first day.

Sometimes it is a blessing to be alone, sometimes it scares me. But when I am alone, I can suffer and struggle or fall down as much as I want, without my loved ones giving me pitying looks, to help me out of the awkward situation. 

I always talk to my dad on the phone on Sundays, I always try to sound as good as possible. Straight sit, have something ready to drink… I don’t know if people “accept” to comfort others. Because if you don’t accept, like me, then you are angry, sad, envious, stubborn, you just feel unfairly treated by life. Or should you bow your head and humbly accept? Is it easier then? I do not know what can make it easier, psychotherapy does not help me in any case. I sometimes read in forums that patients are glad about good weather or because the birds are singing. Hell no, I can’t be glad just because the sun is rising. If I were on a mountain, then maybe….

I just don’t have that humility.

I think the question comes up now because I realize with disappointment that after 2.5 years it doesn’t get a bit easier, the opposite… With more deficits, limitations it becomes clear to me what a bad fate this is.

Being angry and enraged doesn’t mean I won’t fight. Giving up would be simple, but this way is indisputable for me. I think I have mentioned this before, I want to make the maximum out of my possibilities.

  

  

Resume after two years

Today is a day on which I would have gone jogging under normal circumstances. I remember the paths in the forest, where I jumped over tree trunks, puddles and slugs, the smell of moss and leaves, deer that I sometimes met and which then shyly sought the distance. The branches I dodged, the walkers with dogs I sometimes met, sometimes I had my goddog Paula with me, the best dog there ever was. She passed away the month I got my diagnosis. 

I now see joggers out of the window running along the river and I envy them. I don’t go running now, it’s not the 12 kilometers in an hour like I once did that makes me proud, it’s that I make it to the basement to the washing machine and am able to do my own laundry….

My diagnosis is now two years and two months old. A lot has happened in that time. Has it gotten easier?

I am now 500 kilometers away from my former home and friends. Whether I will ever see my birthplace, my old father again, is questionable. Corona makes that even more difficult.

First there was the diagnosis, shock without end. Then the deterioration, and that I lost one thing after another that defined me. First the man on my side was gone, then job gone, car gone, bike gone, apartment gone, high heels gone, surfing equipment gone, many friends and family members gone, my hair gone… My bunch of keys got smaller and smaller, the circle of people around me too. Every loss made me, instead of job and career came retirement. I made the mistakes of moving into a residential group that was not at all what was good for me, for which I left my apartment, my home and my friends. In the meantime I have another apartment and a lot of new wonderful people, who have also become friends in the meantime and are insanely great at helping me and supporting me. I have lost a lot of time, possibly my last mobile months. But the important thing is to keep going – and even if I don’t go running now, I’m happy to be able to do my own laundry.

When I look out of the window and see the joggers, cyclists and the first cabriolet drivers taking advantage of the first rays of sunshine, it makes my heart wistful. Without you. I just think.

Many things have become worse. Balance. And gait. Two years ago (even one) I could still sneak into the supermarket and with a shopping cart you almost didn’t see that I had anything. Now I can move outside only with help, with a cane and if I have someone to hook, or with the walker (which for me is the symbol of the downfall). I don’t know how far I can walk, a few hundred meters? Blood pressure fluctuations makes many things impossible, the fear of passing out is always there. The bad energy, in the morning after brushing my teeth, showering and getting dressed I am already fully exhausted. At least I’m glad that I can still do all this myself and don’t need a nursing service. Speech is much worse, I am quieter, slower, babble and stutter. Every phone call scares me. More and more often people ask “excuse me?” – which I still prefer than when people think I am banana in my head or drunk. Poor fine motor skills force me, everything falls out of my hand, I can’t hit anything, eating with a knife and fork is a challenge. I have been wearing glasses instead of contact lenses for a long time, so that I don’t tear my own eyes out and that I don’t tear a fortune in contact lenses. I spill, smear everything and wear out tons of clothes because I spill on everything. I always run straight to the toilet to avoid an embarrassing accident. Especially getting up at night and in the morning gets me down. Going anywhere scares me, because I often don’t know where the next toilet is, and in what condition. 

But the symptoms are one thing, you book changes, you hope that it will get better, or you learn to deal with it. The other thing is the psychological side. Yes, after two years I don’t cry every day and I take many things stoically and pragmatically, I learn to accept help and to ask for help. Nevertheless, it has not become easier. Nevertheless, one does not get used to the whole thing. Yes, I don’t cry every day, but I could always. It has rather become a silent, inner crying, without tears. In the meantime I know that crying only gives you a headache, so I try to avoid it. But the thoughts of many things from my past could make me cry within seconds.

What I find remarkable are the memories. I remember details, you wouldn’t believe it. Especially before falling asleep and after waking up, this “reminiscing” is very intense. Sometimes so much that the return to reality, is a really painful landing. Still, I love these “trips” and I remember insignificant details like a jog in the woods very vividly. It has become my cinema yet.

What I think is important, and what makes me function, is that I allow myself this indulgence, then I am wistful and cry sometimes but then it’s over and I then live my day. Then I try not to delve too deeply into reality, function pragmatically and do one thing at a time. My feelings of success are different now, vacuuming, washing up or washing clothes is a huge success. I take care of things that concern my future and I neglect things that I cannot influence. Many moments are frustrating, you must not let these moments get to you too much. And try again tomorrow. The list of things I can’t do anymore is long, I just don’t put myself into it or only briefly. Once lie down in it, suffer briefly and intensely and then get up, straighten the crown and move on.

Rehab and Derby Winner

On 10.02 I go to Bischofswiesen for rehab. The invitation came unexpectedly and pulled a lot of bureaucracy behind it.here a phone call (KV, KlinIk, HA, neurologist, Ergo, DB ect) there an order (medical supply store, pharmacy) and where I just do not speak so understandable. Too fast, too high voice pitch, too mushy.
And the corona crisis adds to it. It does something to you, at least to me, which is not exactly beneficial in my situation. And I’m not talking about Haribo Sauer Brenner or Storck Schokoriesen / Schokotoffe.

On the medical history form, there was a question about goals for rehab. Yes, what do you write there?
Quite soberly: Maintenance and, if necessary, improvement of the status.
Or more detailed and exact, i.e. to drive again, to be able to hold the Mark4 for a longer time or just to walk better and with less pain.
I hope that the motivation motor starts again and runs smoothly. I have some sand in the gearbox.

What will expect me there?
Since I sleep badly again (I have already before the date announcement) I speak not only unclearly but run also miserably. I am also a little nervous about the 3 weeks +X.
In my current condition I need one or the other handgrip more help, and I continue to have a hard time with it.
Not that I have doubts or no desire, I have also chosen the clinic because they offer exciting therapies. I don’t know if I’m putting the clinic or myself under pressure. In addition, I can’t just sit in my car and drive off like I did 2 years ago in Hilchenbach. That does not make things easier.
Since it is 730 km, this time the Deutsche Bahn may prove its ability.
I do not test the Deutsche Bahn alone, the dear Doro brings me to the Bischofswiesen, for which I am very grateful to her. If everything works out there is also a travel companion for the return trip. I could write now if everything goes well I need on the way back the free on/off and transfer assistance of the DB, which I booked for the outward journey, no longer. But that would be too much to ask.

The clinic has only one drawback , the cooperation with the Ponies (Borussia Mönchengladbach) well Nobody is perfect and finally I go there as a Derby winner, which lifts the mood immensely.
🔴🐐⚪️Come on Effzeh 🔴🐐⚪️

PS I have a vision of a MSA Stammtisch, where you can exchange and help each other ! Maybe you can also find experts who talk about one or the other topic. Think about whether that would be something for you.

Why I am not a good walker!

It’s Sunday night, the referee has just blown the whistle for the last game!
My club got the first point and got well into the game in the 2 half time. It is not all lost yet. 🐐🐐🐐
I already have the first Christmas present.
If it wasn’t for this damn sore muscle.
Yesterday we were on the road in Köln-Weiden My sister, the Cityrollator and me.
Since I’ve been using one, I’ve been struggling with the correct posture in the thing.
I bought my first rollator in a medical supply store. Today, with a little more experience, I would say that the consultation was expandable. It is a good one, without a doubt. Big swallow tires, stable and equipped with everything my walker must have. Unfortunately, everything has its weight, which does not make things easier as the illness progresses. In the meantime I had also an indoor rollator, which I gave into good hands. In order to buy me an easy running part with a weight of 5.2 kilos (with full equipment), also from Diez! And with him it became really complicated. Because of my tendency to tilt forward ( Kamptocormie ) I rather push it in front of me and so I take up speed. Then I start to tip and have to make sure that I get braked on one side and on the other side I have to make sure that I don’t fall down. My knuckles get all white from cramping. And when I run a longer distance, my arms are exhausted after 30 minutes, the danger of falling increases with every step, because I always slip off the handle with my hands.
We have the. Things on every possible height. Half nothing.
Well in the meantime I have the 4, rollator. You can still convert it to a wheelchair.

Probably I would need a forearm rollator https://www.seeger24.de/Gehen-und-Fahren/Gehhilfen-Rollatoren/Rollatoren:::103_15_71/Outdoor-Arthritis-Rollator-Navigator-Air-fuer-den-Aussenbereich-8-Jahre-Garantie::1857.html?pk_campaign=google_shopping
and for inside so a indoor part of Sajol e.g.: this one https://www.saljol.de/de/indoor-rollator/

F*ck MSA, one is so rarely ahead of this disease!

Go back to the beginning…

Go back to the beginning…

…go there immediately. Do not pass go, do not draw 4000 Euro!

I filled up like this or something like that on 12.08 when I was lying in my bed on the periphery and could not even wash my face, let alone bring a spoon to my mouth.
How did this happen? Let’s go back a few more days. The great heat was hard on almost everyone, but neurologically ill patients a bit more.
I simply did not manage to drink as much as I should have. Especially since every trip to the toilet was exhausting and accompanied by a certain tendency to collapse, which I more or less lived out. You quickly reach the negative range with your fluid balance. The ventilators did what they could, but it wasn’t enough: Until Tuesday, my body temperature was at 40.7°C and I was unstable in everything I did. Even the Alaska Boys did not bring any cooling down but only stomach ache. I only lived on my tablets.

The question of all questions hovered over me and Marga asked them on Tuesday morning. How long would this go on? Because of the study, I wanted to delay a stay in hospital as long as possible. They don’t like Biohaven and I was afraid I would be thrown out. Since the study is something like therapy for me.

My family doctor then took up the reins and registered me in the outpatient clinic. Marga called the ambulance and one hour later I was lying in the ambulance with a liter of Jono1/1 and 1gr of paracetamol. Blood was taken. Blood cultures, a blood gas analysis was made, whereupon there was 3 l O2. And of course I was crossed off Covid-19 and MRSA. It is not nice, you get the feeling that they want to get through the nose to your brain.  Vital signs were also measured.
I was grateful for the permanent catherter. I would never have thought it possible that I would write this. But it was.
Dr.H. tried with a lot of patience to take a medical history and to find out how I had maneuvered myself into this situation. I could not get two words out clearly. My mind was working fine, only the language thing didn’t work out. That was a bit desperate.
The DZNE in Bonn did a great job. They sent me a list via WhatsApp with the medications that I shouldn’t get if possible.

I should still be x-rayed. And I can only say that it’s really not nice when you get wishes for recovery, encouragement, etc. and can’t answer.
At some point I lay in my room with a temperature of 39.5 degrees Celsius, drank the “good” Renser without end and was afraid to sleep. Like other MSA patients I sleep loudly and was promptly woken up by the night watch because my fellow patients were afraid I would mutate into a vampire or werewolf. After that I could not sleep anymore.

In the morning I was at 38,7° and not able to wash or have breakfast. I was infinitely grateful every time I saw Alex and Jessi standing in the doorway. They helped me with positioning, mobilizing and serving me food. During the day and the following night I worked myself down to a temperature of 36,5°. I did not sleep as much because of the danger of mutation.

The next morning, after the intervention, the girls gave me an air-conditioned single room on StP. Fantastic 22°C! Sr.U pronounced the magic words: “I can help you take a shower too”! I did not have appetite yet but I did not care at all. I was able to eat alone again with knife and fork! It would not have been enough for a 5* restaurant but I would have dared to go to a fast food restaurant.
In the next days I got daily physiotherapy and 2 per week speech therapy. And I decided to get an SPK, an indwelling catheter, which is placed through the abdominal wall into the bladder. The procedure is done locally and is quite fast. Somehow I felt sick for the first time while the catheter was being inserted, I can’t tell you how sick and at the mercy of my body I felt. Especially since I also fell down afterwards and visited the surgical outpatient clinic – 2 stitches had to be done.

The rest of the time I was nursed. 2 years ago I could not have imagined being cared for by colleagues. I would have had massive problems to accept the donations. Starting with all the visits, fries with mayo, drinks and muesli to help with the showers. Or the morning bread roll express (ground pork roll with croissant).  The children of the colleagues painted and made pictures. I received a lot of attention and support. The STP and my former station were just great and I was thankful that I could be there .

Here we go – another stage

Here we go – another stage
Last week on Wednesday I received the mail that Biohaven considers me suitable to participate in the study.
As final start date we had agreed on the 23.07.20. So I am the last of our happy WhatsApp group to start the study, with a delay of 4 months. What was partly due to Corona, but also to Germany and its strict regulations. In addition, Biohaven gave the participating research institutes only 2 weeks time to recruit.  When I heard that, I was glad that I finally got in.
Biohaven was the first study that Marta and I found.

Yesterday the University of Düsseldorf called me and invited me to come and meet them and see if I was suitable to participate in one of their studies. A) a follow-up study and B)BIIB101 from Biogen. It would consist of having RNA fragments synthesized via lumbar puncture antisense alpha-synuclein oligonucleotides.
However, it is not allowed to participate in 2 drug studies at the same time.

8:30 a.m. on a Thursday somewhere in Berrendorf/Wüllenrath a small red car is loaded as if it was going on holiday, and the new walker came with it, including the seat part.
The traffic was quiet, Marion too!

After the arrival we started directly, with blood taking, physical examination, EKG, surveys and questionnaires I was very busy. My sister (study companion) also got 2 questionnaires to fill out before she went with my nephew to Haribo, Lindt and Poldis Dönnerladen.

What I was not aware of: the “sponsor” prescribes everything from the ECG electrodes to the order in which the blood samples are to be taken. The employees of the DZNE have to have who knows how many user passports because all equipment is provided by the sponsor. Apart from the MRI! This ensures that everyone can complete the study under the same conditions.

While the two of them enjoyed local “specialties”, I had a lumbar puncture with Dr.G-E and Mrs. E on the agenda. All the information I received seemed so familiar, except that I was standing in front of the bed and not sitting on it. But that was in another life.
The puncture was unpleasant to bad, so I would prefer a local one next time. The lumbar puncture is part of an optional study, where on the one hand the concentration of the drugs in the liquor and on the other hand they also examine the proteins and why they are deposited there of all places.
After a successful puncture, the patient should lie still and drink a lot.

And then came the moment to take the tablets! In lateral position like in the morning at 6.00 o’clock. Somehow I had imagined it to be more spectacular. I don’t know, only that I had to stay there for another 4 hours for observation !

There was information on the net that the drug would be available for 48 weeks after the study.  So the right one not the placebo.
Mrs. E. said it would be different from country to country, but there is the possibility that the sponsor would continue for 48 weeks and no one would take the placebo anymore, but all would take the drug. But it depends on the results and the “sponsor”!

Now we have to wait and see!