Travel with MSA

I am in Canada now for a few days! Seeing the Ocean, was on my bucket list, besides I have two cousins with family here and my godchild whom I haven’t seen for over 30 years now, you can say it’s since the baptism. She’s became a pretty young woman by now.

I wanted to make this trip as long as I am capable to travel. But I was excited about the travel anyway.

The distance from my home to the airport is about 50 km, I had a supernice offer from a friend, I could have take a taxi, and he would take over the costs – but I wanted to make this experience, to go out on my own. Maybe on my way back home I’ll take the offer? I’ll be more tired.

So I had to take the bus to the city train, then the city train twice, change trains once. I have a rolling suitcase which I can pull relatively easy beside me and it should work with the walking stick. If necessary, I can still take a taxi from the city train station. That was the plan.

I packed only the most necessary things, so that the suitcase is not too heavy. So I left with a half empty suitcase.

The biggest challenge was to know where the next toilet is, I like to know that and I like to have the possibility to use it, no matter if I need it or not.

So I was getting off in the morning, in time, to have enough buffers. 

The ride was exhausting but it worked. Every time I had to get in or out the train., I had to plan every move. I was there in time. 

At Munich airport I had to walk a long way, until I found the check-in. From there everything was easy, I booked a Assistance Service, that means they push or drives me, where I have to go and I get to board the plane or transport bus first. I sat the first time in my life in a wheelchair. That was a strange feeling.

I was really proud of my self when I arrived at the airport, to make it.

I had to change planes once in London. The flight to London was uncomplicated, there were only millions of children in the plane and all of them was screaming. But the short flight to London can be endured, and I had to wait a good two and half hour, there to change. Arrived there, I was driven from one terminal to the other by bus, which was an eternally long journey. There I was “temporarily stored” in a lounge, where all handicapped people had to wait. Being in London was a bit melancholic, because I planned earlier to go with my ex-boyfriend to London, but now everything cames different.

Then came the long flight to Vancouver. Fortunately I had a place on the corridor-side. I would recommend it to everyone to ask for it. Besides, I would recommend to refuse eating airplane food, if fine motor skills are an issue. I didn’t dare to touch it and almost let it go back, as it was. It’s all tiny and packed, I knew if I touched it, it would end in an accident. The worst thing is about the long flight, I had time to think about everything, the whole life, the disease..

All in all, you can handle the flight. A long flight has always been annoying. Compression stockings and medication ready.

Jetlag is of course annoying, and in the afternoon I am already tired. Inside me I seem to dry out, here is still hot and everywhere air condition is running, which certainly does no good in addition, dry eyes, dry mouth and constipation torture me a little bit. 

Now I enjoy the care of my sweet cousin and try, not too much to get used to the pampering program, because I will miss it at home.

Photo: Screeny / photocase.com

Let’s go to Canada!

Sleep twice more! I am super excited. I’ve been packing in my head for days now and hope everything goes smoothly.

I have flown before several times in my life but this trip is different. I want to do it as long as I can, see the ocean, see my cousin. My dear cousin is there and looks after me, fortunately, and there I am well looked after.

The way to the airport – which I want to do alone – is a bit exhausting, but with my little suitcases it’s almost like driving a walker. At the airport I booked a wheelchair service, they will push me from A to B and I will be allowed to board the plane before everyone else. Once I have to change planes in London.

Then there is a long flight. What I have in mind is foreign health insurance and an emergency description of my illness in the wallet, if something happens, then they know immediately what I have. But nothing will happen. Support stockings for the flight (sigh, I hate them).

The landscape will be beautiful – Vancouver and the island…I will report from there!

The three days of Condor or Marion on the road in cologne

Today, I somehow don’t wake up properly, I am tired without end, but I can’t get enough sleep. After the last night it was 5 hours. In total it was the last 3 nights, 13 hours, which is a bit tight for me. And that although I have three mega exciting days behind me 😉
Thursday I had to go to Sürth to do something. I drove back with the KVB (Cologne transport companies). I can see in my mind how many people collapse and shake their heads. For the uninitiated our beautiful city, this is our public transport and it has almost traditionally a mega bad reputation.


The bus stop, I was told, is about 15 minutes away! So for me then approx. 30 minutes. I know, that doesn’t sound like much, but it was very warm. I wondered if I should accept the lady’s offer to call a taxi, but I thankfully refused. There was enough water on board. And go! Without shadows along the road, while the sun was burning. Sounds like an apocalyptic movie or a western, so I felt. I had to take a few small breaks to drink a sip. And the ascent to the train station was really exhausting. Fortunately there was an elevator down to the tracks. I wouldn’t have noticed it earlier 😉 Getting on the train with a walker is not that easy, but I was helped every time immediately, which is very nice and I also thanked and smiled friendly. However, one feels very ill. Getting out at Neumarkt was no problem. Elevator -1 floor up – check ! To find an elevator to the top, which was not defect, turned out to be a bit more difficult. At the top of the Neumarkt it was called line 1 or 7. When I sat well, call my sister and tell her when I will be in Weiden West. It was exhausting but ok. Arrived at home I was glad to have made it alone.

On Fridays the BuLi game day begins. Usually I start the day with sending 10-15 reminder short messages, so that all players have given their tips at 7:30pm. This reminds me of the matchday summary I wanted to write. You don’t get anything :-). I quickly get to neuro-PT and finish it afterwards. Small camera, scarf, jersey on (this season no. 22 Jorge Mere) and off to Müngersdorf. First home game, everyone is there earlier, you have to greet and discuss first. My club has given me a disabled parking lot (if the pension office would be so uncomplicated) and I can go through the media entrance. <3 effzeh <3 I give the walker to the Red Cross and then walk slowly to my place. 6. row is well feasible (also without railing). Because of the parking lot everything is more relaxed. The game was less relaxing. We had a new chain of four, 2 players gave their BuLi debut. The conditions could have been better. But in the end the “BVB” needed Brand’s substitution to win. They change Brand and we Höger, where I’m always afraid that he’ll get a red card immediately or tear the cruciate ligament. The replacement of Cordoba due to injury didn’t do us any good. He also dropped out against Freiburg. Congratulations to the “Schwarzwald”. We deserved at least one point. Nevertheless, I was proud and satisfied with the boys. 78 minutes we had them on the verge of defeat and it would not even have been undeserved.
Around 1:30 o’clock I was in bed! Getting up the next morning didn’t look so smooth.


Saturday should be the day, the flight over Cologne, which had already been postponed, was on the agenda. Bonn Hangelar, a cute little village with an airport for motor and glider pilots. Of course we arrived a little earlier and had a cold drink in the shadow of the tower. To our pilot Patrick, I had mentioned before the wishes concerning the route and had asked whether I come due to my restriction at all into the Cessna.
When it was clear which “our” Cessna is, I was reassured, there was at least one kick and the entrance is not so high. Nevertheless I needed support when getting in, but it is warm in there. That looks cute when the pilot puts an Ipad and a map including a checklist around his thighs to do this checkup.
And then it started. The Rhine up to Cologne over the cathedral. It is really the most beautiful station chapel in the world.

Along Aachenerstraße to the most beautiful stadium in the most beautiful city of Germany. When you then see the north curve and your place… <3 past

Brauweiler to Berrendorf to the brown coal mine. It looks like the earth is a disc after all and simply stops here.

Via the airport Nörvenich, Godeshöhe (Venusberg University Hospital) we went back to Hangelar. I got well out of the plane on my own, climbed over the wheel. And then: I’m still standing well!!!

I was already rolling over the meadow. When I stopped laughing, Patrick was already there. Marion – quadruped stand ect. no that was nothing for Patrick and before I knew it I stood on my feet! And I am really no elf at the moment. Only that I did not stand stable and tilted almost like a board to the back. In the end everything was good and with the stick and breaks I arrived intact at the car. But it took a while until my legs belonged correctly to me again and also my sense of balance was halfway under control.

But it was a great experience and I have to do it again because of the pictures. ? and my sister was so inspired that she even drove highway! ?

 

 

Season opening or the obstacles of an active life

Today was the season opening of the “effzeh” on the stadium. At the opening of the new season the team will be introduced, autogramms can be obtained, the fanshop can be visited and there will be a lot of events around the Müngersdorf Stadium. Last year I could not participate because of my pronounced circulation problems. This year I really wanted to go. However, for such activities, a few conditions must be fulfilled.

I should have slept at least six hours.  My legs should be light rather than elephantlike.  Stockings are absolutely obligatory, no matter what weather or temperature. Medication must also be on board, as well as a bottle of Effortiltropfen. A backpack with approximately seven kilos pack for support, so that I walk a little more upright. Not every restaurant or cafe is suitable for walkers. My blood pressure should already be at 90 mmHg systolic.  My pain should be at 4 NRS moderate (if 0 is symptom-free and 10 is the worst thing you can  imagine)  and a lot more!

Depending on which combination of the above requirements are not met, I can cancel again and take a seat on the exchange- bench. If I will have the chance to change in again is uncertain. So for the same day. I don’t want to whine and I appreciate the days when everything works out (like today) and yes, I know it can be worse but sometimes I’m depressed and frustrated and sad or just sick about the situation.

I didn’t fall asleep until 4am. last night, but I slept until 10am. The 30 minute walk through the shady city forest was ok. Arrived on time for the presentation of the team. Old “Hennes” had his last official appearance. Some may explain us people of Cologne for crazy, because we celebrate the change of our mascot like a true player transfer and if the current “Hennes” birthday has reported the TV live and the press crowd in the Cologne Zoo where the reigning “Hennes” in the small Home of Billygoats lives is unimaginable! The crowning finale of the team performance – we (50,000 visitors) sing the club anthem together. A walk around the meadow, one or two cold drinks and a shopping tour through the fan shop later we made our way home. After 5 hours we were flat.

It was nice 🙂

 

First week at home

What I was looking forward to, on my own bed, standing in the kitchen myself and cooking or baking something. The three Cats, other TV programs except Kabel1 and Vox, on real Wireless, LTE, Cologne and much more.
But what was ahead of me in this first week, holy shit I should have hung on for another ninth week.

I was at the Customs office, the Public order office, the Road and traffic office, Health insurance, Pharmacy, the Neurologist (because it was so nice, twice), the GP, the City administration, in the Medical supply store to measure stockings, brought the walker for inspection, birthday gifts, shopping and much on the phone, With the Alliance, the Health insurance company and many others.

Tip 1: Never forget to fill out the form G0512 and send it to the federal government, if it is the one who pays for it. Otherwise there is no money.
Tip 2: when filling out the application for a disability pension, I would always ask for help again. I got it from the city administration. Everywhere I would have got an appointment only in September, with the city administration it took exactly 3 days. Besides there was a list of the necessary documents. And I filled them up with all the findings and reports I had. And ask before how long you are still in “sick pay”. So that nothing gets lost. I am glad that now everything is on the way. Contradiction with the degree of disability, pension, “MDK”, movement (ok approx. 20 boxes are still to stow). Only the tax for this yeas is still pending.
In the evening I was usually so down that I fell asleep in the armchair before 9pm. Mostly so deep that my sister had problems to wake me up for the 10pm medication. And when I was in the bathroom after and wanted to go to bed, I was awake again ? Thank God the podcast season started with the preparation for the Bundesliga. Drei90 and the FC podcast are my favourites when I wake up at 3am.

I already cooked and baked. And the first time I made “cauliflower schnitzel”. I say, the cauliflower was very tasty but: what a mess is that with the breading.
Oops, almost forgotten: On the 18th of August it goes into the air! We fly with a Cessna over Cologne. I chose the Rhine, the cathedral and the “Müngersdorferstadion” ( ? ).

And at the end of the week my new phone comes with the contract extension ? Those, who know me, know which color it will have.

I did it!

I celebrate every time I can still do it myself: Cutting the grass. The problems will start, I think, if I can’t do it myself. That’s the advantage of living alone. If I had a man, he would say “Leave it baby, I’ll do it”. And I would watch lemonade drinking from the terrace, in my comfortable armchair, and rust.

But I have to admit that mowing now takes three times as long, because I have to sit down every 5 minutes and rest. I choose a weekday, that is not too hot, and so that my neighbors are not at home, so that they don’t watch my ballet in the garden, or when I crawl under the trees. Most of them don’t know, that I have an illness, they will think I am drunk…

Otherwise cutting the grass is like driving a walker. Like shopping with a shopping cart. But every MSA patient knows this trick. I have to wait until the sun is gone, if I didn’t have the trees I have to work around and mow under, it wouldn’t be so hard.

I still profit from the fact that I can still sweat, and I do that extensively, and gasp, sometimes I have to crawl, or I fall, but that is not bad, on the soft garden soil.

So, now I take a shower and then I’ll have a little glass of champagne to celebrate!

Photo: complize / photocase.com

One step forward, two backwards

I have been diagnosed with MSA-C for half a year now and since February I have been consciously doing something about the decay. Of course it’s hard to motivate myself, because it’s like a fight against windmills. I have to do a lot of work “just so it doesn’t get much worse”. That is of course frustrating. I often think that if I had done so much while I was still healthy, I would have a perfectly trained body.  And then there are the exercises of speech therapists and OT which really cost time. But I have time now…

I intend to do my exercise program every day, plus every day something in the household, like sorting out my wardrobe or cleaning the fridge – and the day is filled with it and over. People ask me what I do all day since I stopped working. Well, maintain my beaten health. It doesn’t get boring. And since I get out of breath very quickly, everything with breaks and that takes time.

Of course there are days when I don’t feel like moving. Then I stop and stare stupidly into the television, then I need something which distracts my brain. I am in pyjamas all day long and eat ice cream (all this has been a secret until now). I think that has to happen sometime. But the next day I still feel guilty.

Whether all that is useful? To be honest, I don’t know. My neurologist is satisfied with me. She says it could be much worse. Besides, I know other patients who are about my age and stage, and they are in terribly bad condition. But I also know patients who have been struggling with MSA for years and do their exercises diligently on a daily basis and are in the same shape as I am – or hardly worse.

Of course, the decision has to be made by everyone for themselves, I think these exercises are good for me, going for a walk every day is good for me – also psychologically. I recently rode my home-bike for 30 minutes, now I won’t do that because I’m afraid that I’ll fall off.


My own gym in the living room

These things you can buy all for little money on the Internet. And you can be inspired by PT and ask your trainer what exercises you could do at home. Yoga on DVD is also good (beginner mode). Many exercises can be done sitting down, even lying down.

My blood pressure is better than it was in January and the hot, painful feeling from the thigh has disappeared. I adress it to training. And I know what happens after a break of two weeks: loss of appetite, weakness, digestive problems, sleep problems, sluggishness.

Surely giving up becomes a topic later, one resigns. I don’t even want to think about it today. In any case it applies to now, which went yesterday, must go today too.

Photo: schiffner / photocase.com

Calories, Calories, Calories (written in nurse mode)

For people, food represents one of the central areas of activity, which is also closely linked to pleasure, experience, stimulation and, of course, interpersonal communication. However, eating is not only for the purpose of self-preservation, it is also a social act. In the advanced stage of the disease we consume too little food/fluid. And so we present our care and relatives with a problem. The question that arises here is: Why is this so? Is it just the MSA or is it just the wrong food? (Food biography) If there are swallowing or chewing disorders, can I still smell at all? Am I perhaps already disoriented because I drink too little?

The goals of food intake can be:

Eating as a social event between caregiver and patient
Daily structure (food ritual)
Appetite stimulation
Promotion or rediscovery of resources
Promotion of movement – guidance for independent eating
Depending on our limitations, it is necessary to find out individually how and to what extent the funding should be provided.

Animate with scents (if the patient can still smell). Make coffee / tea. Squeeze fresh juices.

Also the establishment of a small chat corner with coffee, tea, juices and biscuits, where one can withdraw, seems meaningful.

Food and drinks should be offered in a recognizable and unmissable way.

The use of unbreakable crockery, drinking aids and active hand-giving are possible aids to self-help.

Increased consumption of fruits and vegetables strengthen the immune system.

If necessary, create a drinking plan.

Another variation of the independent food consumption is finger food – it may not be larger than one or two bites and should neither be too hot, too sticky, nor too hard.

Sometimes it is necessary to serve puréed food. Then it is to be noted that the food is freshly prepared and puréed.

If the calories are no longer sufficient, you can add Fresubin Shots (high calorie/taste neutral) in the dessert, drinks etc.. Or offer a Fresubindrink yoghurt.

Sometime the time comes where you have to think about a PEG.

These tips and tricks were developed with basal stimulation in mind. If you want to know more about basal stimulation (how does it help me in caring for my relatives and how can I as a well-groomed person benefit from it). Or do you need finger food recipes (muffins)? How can such a food biography, a drinking plan look like?

Write to me: marion@leben-mit-msa.de

Aids: Curse or blessing?

Recently I read a post which said: “We delayed the wheelchair as long as possible”.
OK, first of all: everybody has to find his own way and I don’t criticize anyone else for his decision.

Yes, also for me it was a surrender before this disease when my boss visited me in the university and insisted to take the walker with me to the evening mobilization to the cocoa machine. The nurse of the station had put him to me. I appreciated him with no look. That went to me everything clearly too fast. Until my boss came and meant we take this now with us. Oh nooo, must be that? It had to be probably, she is there little talk ready!

Hardly I was dismissed and with my GP I got a prescription about speech therapy, physiotherapy and about a walker! Well, I think he can be placed anywhere. At some point I need one!

So let’s go to the sanitary house! It must be red and suitable for off-road use! My health insurance company gives 70 Euro in addition! Wow! After 39 min trial with three different models came a Dietz Walker Taima XC, color red-metallic. He got a cup holder, an umbrella (of course in red), an Effzeh bell, Effzeh stickers, a Hennes (mascot of the “effzeh”) and a lock! It has a weight of 9.1 kg and with the pneumatic tyres it is suitable for outdoor use!

Now it was placed in the hallway, always somehow in way! Until it was somehow so far again that the blood pressure was just a little over 60 – ok, he was in the right place!

During the following walks around the Geissbockheim, Alex and of course my boss insisted that the thing come along. That’s how we approached each other!

I’m still not his biggest fan but he makes it possible for me to go out alone. I am not dependent on additional help. I drive downtown, go to the stadium and meet up with friends. He makes for a better gait pattern, which of course helps me when I’m on the road without him! God knows it’s not as it used to be but it’s still possible! Only differently!