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.
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
The article has been half finished on the iPad for quite some time. Somehow I lacked
the muse, the time and I did not want to deal with me and MSA excuse.
And so I sit in front of the watch the EM final Italy against England.
And, no I don’t hold to either nation. I have to think of 2006 and how cool that summer was, apart from my torn inner ligament and the thick splint I wore for 6 weeks. In 3 years the European Championship is in Germany and sometimes I ask myself how I will experience it.
I often have to think of Mrs. S. Barbara and Catrin know who is meant.
z
And while co-commentator S.Wagner was quite delighted by the fast leading goal of the English, I thought such a drop kick goal has Rafael Czischos of 1. FC Cologne in the relegation against Holstein Kiel also shot and Immobile has also already lost against the Effzeh 2:1, with the BVB.
Otherwise I suffer from the changeable weather.
Is the one just over there is the next already before the door.
Meant is the heat – in Cologne and Cologne’s environs they also like to say et deut.
Now it’s time to drink, drink, drink and sleep with a fan.
Attic apartment, that’s all I have to say.
If you try to optimize a condition, it is usually at the expense of processes that usually still work quite well. If I sleep without a fan, the heat accumulates and makes me even lazier.
If you sleep a little more or don’t do so much, you get problems with your muscles.
The fan hits my vocal cords. And since I currently have problems with speech and speaking, which is also due to the hardened jaw and throat muscles, sometimes no sound comes out. In the App Store I found an app similar to a speech computer, but without eye control.
Due to the temperature regulation disorder and that I can almost no longer sweat, it generally accumulates quickly in the body. The side of the body that is below is usually extremely warm.
I never thought that I would become a big fan of Esemtan Gel (an acting and cooling gel). And every time I see water, whether it’s a river, lake, ocean or pool I have such a desire to jump in. In my mind I have even built devices that would help me to get out of the water again.
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Running is also a thing that does not work so well.
After the first heat it still worked quite well to the music of Colonel Hati’s Frühpatroullie (Company A Song).
The power decreased with every day above 22 degrees.
I still had to go to Bonn for the final examination of the study and I’m now getting the medication in any case that was last week Tuesday and then it still worked quite well with the stairs and me. Especially when you consider that we left at 7:00 and returned at 18:30.
Thursday I wanted to the SPK change have only 7 steps managed, until 14.00 still rested on the platform and then an hour and much help needed until I was back in the chair.
I would like to apply for an electric stair climbing aid soon. A Scalacombi S36
Oh well, it’s just always something.
I remember how much hope we had in the Biohaven study.
Now we are almost 2 months away from the end of the official phase. And the question arises:
What happens next?
What are the possibilities?
There is the “Australian” Alerity with ATH 434, but they are only starting with phase 1.
And there is the Wendelsheim : modag with Anle. 138 b
They want to recruit affected patients at the end of the year. So far, so good.
I’ve already deteriorated since the start of the study, that I think I’m taking a
I think I’m taking a placebo or it’s not working as I’d hoped.
Especially my speech, mobility and balance have gone downhill!
Biohaven is about to go into an off-label study, so if I continue now I probably won’t be able to join modag.
I probably won’t be able to join modag because they don’t know yet how long the break has to be between two trials.
And how will I be after a year if I give up the guaranteed genuine Biohaven?
Will they even include me in the study and if they do, which group will I be in? Medication or placebo?.
And if I get into the drug group and Anle 138b works as described, So stops the disease by dissolving the protein clumps in the cell. How good or bad will my level be then?
Sorry, I haven’t been in touch for a while, I had a physical and mental slump, which culminated in the first week of my 30-day rehab in Loipl / Bishofswiesen. One or the other may now ask how I ever came to Loipl. I had the following priorities in, exactly the order
1) neurological specialist clinic 2) which therapies are on offer 3) rooms 4) surroundings.
Actually, I was lucky with everything, except for the food and the care.
However, the start was rather uninspiring. The first night I didn’t sleep, I didn’t know what the procedure would be – roughly speaking, we were a bit overwhelmed, the ward and me.
Not even a quarter of an hour later I found myself in a single room with a fantastic view on the nursing station, where I was to spend the next 6 days alone, 5 of them in isolation, mostly lying on the floor. I was so unstable as far as my steadfastness was concerned. They were painful days. If I went down just once a day, it was a good day. My tendency to fall did not earn me any points in nursing.
From the 8th day it became better and I got a single room on a station, where one was self-sufficient. Yes, they were indeed self-sufficient. Among other things, I needed 4 hours to unpack 2 suitcases.
And also otherwise I needed a completely new time management.
In the morning Mirella had to come 3 times until I was ready for the day.
Which meant for me: 6.00 a.m. to get up. Those who know me, know that 6.00 is truly not my time.
The days were quite full, thanks to my very motivated partly also over-motivated therapists. If I had 2 x at the physio, that meant for me 23 stairs up and down 70 m without rollator run (thus at Tobis shoulder hacked)
and floor exercises. Sometimes the last therapy started also only at 17.00 o’clock, which had the consequence that I fell asleep afterwards directly.
If it wasn’t cooking or working, there were stabilization exercises in occupational therapy.
In addition, there was speech and voice therapy. One should not believe that speaking is so strenuous. A little relaxation therapy and psychological support. During the first treatments I had a real feeling of illness for the second time since my hospital stay, which I attribute more to my battered psyche than to my body decorated with bruises.
Each time I was exhausted after that hour. Until I asked for an increase in venlafaxine during rounds.
Together with the therapist we went in search of the good feel moments, which I should then perceive and enjoy more consciously. 3 days later the increased venlafaxine started to work, things started to get better. The fall frequency decreased, although it didn’t stop completely. Even the pounds were falling off, finally I was put on a radical diet . No half Nutella roll , no small glass of juice for it much rattatouille, almost daily.
Even though the last few days were almost galactic, I was looking forward to the Alex who would accompany me home. She took over the baton from Doro, who had brought me to Loipl. Thank you girls ,you were so great
After the very last application I was so exhausted, I just wanted to put my feet up for half an hour until Alex was there and promptly fell asleep.
After I woke up, I need 3 attempts to….
… Yes, finally to roll out with momentum and slide down the bedside cabinet. Already when I left the bed, I knew, immediately it would really hurt. And so it came then also.
It was good to be able to call Alex to pick me up from the floor. Or to help me.
Dinner, pack your bags, go to sleep, get up, shower, have breakfast, say goodbye, call a cab and off to Freilassing.
Once there, we were told that the hydraulic lift was not working and that I should be carried in. Nah, not with me ….
,,, with a little help I could climb in alone.
To get off 10.5 hours later in Cologne. Cologne in the evening: there is nothing more beautiful.
Even if I still notice from the last fall what, from the care measureless disappointed and 3 days after arrival still between 19.00 and 20.00 o’clock in the bed had, because nich always in the evening in the armchair fell asleep.
I will also next year again a REHA or a concept therapy apply, since I am of the opinion that each Reha one helps in any way nevertheless.
PS: Thanks to all package senders, you have saved me many a day!
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.
I was recently allowed to participate in a question/answer session , with a luminary in the field of atypical Parkinson’s syndromes.
In addition to the medical questions, it was also about dealing with secretions, in professional circles gladly also called Sekretmanagemet, which means it is more than just suction.
By the way, one is rarely satisfied : either it is too much, too little, too viscous or too liquid secretion.
Due to diseases and / or therapy elements (tracheal cannula), the physiological cleaning function (cough-cough) of the lungs is often disturbed, which can lead to infections (pneumonia). This must be avoided.
What all is involved?
1) pharmacological approach
Inhalation with physiological saline solution 0.9% (pzn 00808558 ):to moisten and care for the mucous membranes. In case of very viscous secretion, one can inhale with 3% saline solution.
If you inhale with Salbutamol (PZN 01448760) or Ipra (PZN 00652547)
These do not dissolve the secretion, but improve inhalation and, if necessary, allow a burst of cough.
2) mechanical approach
Especially we neurological patients often struggle with cough insufficiency. A cough assistant or cough assist can improve the situation.
In simple terms : it supports inhalation with positive pressure and exhalation with negative pressure .
It is recommended to “breathe” 3-6 cycles (inhalation+exhalation = 1cycle), either through a mouthpiece or mouth-nose mask.
The setting of the pressures should be adjusted by a respiratory therapist or dstationary if possible.
3) Air stacking is mentioned only as a matter of form and should be left to trained personnel,”:Air stacking” using hand-held resuscitator bags. This will cause hyperinflation and better ventilation of the lungs.
4) Suctioning secretions from the trachea.is not witchcraft, but one should still be instructed and be aware of what can happen. Atraumatic and as thin as possible (PZN 03390289 Ch10-Ch12) catheters should be used. To get the best result, the principle is “AS HIGH AS POSSIBLE, AS DEEP AS NECESSARY.” The better endotracheal suctioning can be prepared with other measures, such as respiratory gas conditioning, cough assistance, and the like, the lower the risk from “deep” suctioning. If possible, the complete secretion should be cancelled.
Now some will think : logical, why else do I do it?
Complications like mucosal bleeding, panic attacks or retching ( up to vomiting and low heart rate) can occur.
Please pay attention to hygiene.
Only use the “NO-TOUCH-PRINCIPLE” for short suction catheters. In this case, the sterile part of the suction catheter should only be touched with the sterile glove. Long suction catheters are used much more frequently. For safe disposal, wrap the catheter, e.g. in the glove. And put it in the residual waste.
Be well instructed!!!
Here is a small video to illustrate the procedure
5) Positioning and mobilization
Position changes may not only serve a decubitus prophylaxis or the well-being. By different positions also secretion can flow in accordance with the core sentence “PUT THE GOOD LUNG DOWN” from the lung parts by means of gravity in the direction of the windpipe. From here, with further measures, the secretion is to be obtained.
Just the reasonable mobilization provides a very good basis on which further measures can be built. Positioning in the paschal seat, or heart bed position, is usually only a minimum requirement here. More positive is the mobilization, on the edge of the bed or, in the chair and a gait training, change not only the ventilation in your quantity and / or quality, but also increases the quality of life.
6) ASE , Vibration ect.
Contact breathing, vibration, percussion, nebulization ( with an ultrasonic nebulizer):and simultaneous joint breathing and coughing usefully flank the above measures.
Breath stimulating embrocation (ASE) is an element of basal stimulation.
Mobile patients sitting on the edge of the bed or vice versa on a chair
-Immobile patients sideways position
-At least 1 hand is continuously on the patient’s body during the entire offer.
-The rubbing is done in skin to skin contact, so without gloves!
-A medium is used (W/O emulsion)
-The offer should be carried out in a calm environment without hectic rush.
-The fingers are not spread during the offer, but form a closed surface.
The rubbing should be carried out in a breath-synchronous way, but it is not possible to offer a 15-breath rhythm to a patient with a 40-breath rate.
-The rubbing is carried out on the right and left side of the spine, the spinous processes always remaining free
-The beginning and end of the rubbing are made clear
Descending: pressure in thumb and index finger
parallel to the spine
– Pressure in the little finger
– Uniform, low pressure of the whole hand
Also from basal stimulation, to support breathing, comes vibration.
To loosen the secretion or to find a better breathing rhythm.
find.
A facial vibrax, razor or electric toothbrush are suitable for this purpose.
The Tri-Flow (PZN04751855))
should also provide for a loosening of the secretion.
Breathe and cough together for a physiological breathing rhythm.
What to do in case of too much secretion (hypersalivation)?
Medication e.g. with scopolamine patches ( PZN: 00107146))
or Botox injections into the salivary glands. Tricyclic antidepressants also cause dry mouth.
Non-drug, there is little that can be done. For one, you can put a gauze wrap in the cheek pocket and direct it out. Depending on the size of the wrap, this is probably uncomfortable and also,if we have it in our head, we get it all.
Also one can tinker a suction like with the dentist. Please no “continuous suction for several hours
Who has questions or additions, which is helped here!
Marion@leben-mit-msa.de
I do not claim the right to completeness here, otherwise it would have degenerated even more 🙂
Yesterday, 3 years ago, my sister and I were in Belgrade for what was probably the last appearance of our Effzeh in Europe.
And tomorrow it will be two years ago that my new neurologist spoke the “magic” 3 words: “You have MSA”! In between there is 1 year.
But back to the away tour. At that time I usually had terrible back pain and somehow, I just didn’t feel well. All in all. My physical condition left a lot to be desired, I guess I need twice as long for everything, I was reluctant to walk in emergencies and riding my bike didn’t work out so well anymore. What do you do then, you treat yourself, that was the silver tour with the Effzeh to Belgrade.
In the morning at 04.00 o’clock I picked up Marga and we went to the airport Cologne/Bonn. I always loved it when dozens of cars with K-FC license plates on the freeway were heading in the same direction. When you encourage each other at the rest stops because you are already playing against the descent again.
You tease with the fans of other clubs. Oh man, how I miss those times.
I like to remember the 1st away trip to Leverkusen where we won 4:1 (2x Poldi, 1x Nova, 1x Jajalo). Or the 1:0 victory on the Betzenberg. The statio trip to Hammburg to the Milerntor, where we were in the block of ST. Pauli we were in the 3. min through Clemens in the lead. I think you heard me through the whole block. We had so much fun with all the sea bears around us.
Or even that you took the bus to Berlin for one of the most boring 0 : 0 in contemporary history.
Belgrade was my last trip out of town. Apart from the Poldis farewell game from the national team (what a goal) which was played in Dortmund.
After a year where it mostly went downhill, tomorrow will be the day with the magic 3 words. When Dr. F then asked if I would see myself working again, I answered, I would like to know but not how. From his side came a
“Neither do I, do you currently require sick leave?”
PURE RELIEF
Since then, I have thought and had conversations with my PDL, I could do something like this with consultation. Well, as I have often said/written/read, the first year takes away the bureaucracy, the 2nd year Corona
A beautiful St. Nicholas Day to all of you 🎅 And 2nd Advent
I often read that caring relatives ask for tips on suctioning or other care tips, that patients are concerned about whether it is part of the clinical picture to no longer be able to roll around alone in bed at some point.
What am I getting at? Well, actually it’s all about positioning. We store canned food, not people. Maybe I can give you some suggestions and tips.
Why do we actually change Posirion? So that the mother doesn’t get sore or the grandfather doesn’t open is the most common answer given to nursing students.
But the prevention of bedsores (decubitus propylaxis) is not the only reason why one should change position from time to time. Other reasons include avoiding pneumonia (pneumonia prophylaxis)
Promoting well-being, pain relief, promoting orientation in space
Prevent the patient from swallowing (aspiration prophylaxis)
Thromboses and spasms should also be prevented.
How often one should turn or be turned depends on factors such as skin condition, circulation, pain, etc., if I stay with us neurological, non-operated patients.
Basically one can say:
A) The softer the mattress, the more difficult it is with independence. There are special Parkinson’s mattresses, where movement impulses promote the patient’s own movement, erection should be easier and the microstimulation will release any existing tensions. E.g. of Thomashilfen https://www.thomashilfen.de/thevocalm
B) Otherwise, as many aids as necessary and as little as possible should be used.
The optimal concept for neurological patients is LIN = positioning in neutral position.
I know, the term is not the most current but only few say positioning.
LIN improves the passive mobility of hip and shoulder, as well as comfort for patients.
It requires more material than conventional positions, which stabilizes the patient and allows him to relax. The heels, coccyx and sacrum are relieved by evenly distributing the body weight. The risk of decubitus is reduced. In addition, the muscles are no longer so tense, so the patient also relaxes.
Sitting bed
To prepare for activities such as washing (if it has to be done in bed), serving food, receiving visitors, etc.
Back (lying down)
At night for back pain (when the patient has no problems with the skin, blood pressure or lungs.
On the back the cervical spine and head are sufficiently supported in extension of the spine (neck roll). The frother roll under the ischial tuberosity reduces the risk of the patient slipping down and a thin blanket is modelled on each side of the body. The feet are supported with cushions in the direction of the back of the foot. The arm position is close to the body.
For the seat bed, the footrest is lowered, if possible.
Lateral position
For more torso stability, the chest and abdomen can be fixed with an abdominal bandage / cloth. Attention ⚠️ Pay attention to the breathing !
Which is still important ⚠️⚠️⚠️Auf the body temperature achten.!⚠️⚠️⚠️
Who is uncertain. Try it out with neighbors, friends or relatives, if Corona lets you do it again.
Speaking humans can be helped here: marion@leben-mit-msa.de
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/
