It’s almost a year since I got my diagnosis, I’ll never forget that day. A year ago I had “my last unconcerned moments”.
I’m writing this now, to be a little closer to newly diagnosed patients, to provide some assistance to them and to show, that the earth is still spinning. I wished there was a place, where one step at a time would be told, what to do.
The diagnosis rolled over me like a train, turning my previous existence upside down and tearing it apart. This can, of course, be experienced differently for everyone. I live alone, my family 1000 km away, I have (intentionally) no children and no husband (I’ll do I’ve been I’ve been a time). I deal with things with myself alone, so the I did with the diagnosis also.
I have felt for a long time, that there is something wrong with me, but I blamed it all on stress, I worked a lot of overtime. But with a few tricks I cheated my way through life and I thought, one day a magic pill would come and solve everything.
I went to the neurologist, but mainly because of balance problems, I didn’t bring my other symptoms up, because I thought they were of a different origin. I had such problems on my high heels, I didn’t mind in the past, I drove with 18 cm car and I survived a beach party in sand (!) without any problems. In the office, or in the group of friends, I was known for my high shoes, and I still have many couples at home. After a year of antidepressants and a psychologist (who said I was fine) I was admitted to the hospital and a series of examinations were done – and they discovered it on MRI images.
I remember when the doctor told me, that they found something after all. That they found something was ok, I never heard of MSA before, what do we do about it now? Then the doctor told me, that we can’t do anything about it, the best we can do, slow down the development. She then roughly explained the disease, but she left out a lot of things (what a fucking task, I don’t want to tell anyone that). I immediately called my sister and cried. I sent an SMS to my work colleagues (I went to the office afterwards) that they shouldn’t address me at all, if possible.
Then I cried for two days and two nights, with no food and no sleep. I googled this thing, of course, and then I get overwhelmed. However, I tried to inform myself on serious pages, to avoid horror messages.There are such statements, like “life expectancy 6 to 10 years“, bad symptoms that can hardly anything help, wheelchair and feeding tube.
With my boyfriend, I have broke up one day after my diagnosis – what my heart had almost torn apart – we had however, not the kind of future-planning relationship, where I would force myself on him, as a nursing case. He digest it for a long time and he often asked why. We can organize a “little wheelchair” and things like that. Unfortunately, MSA is not a disease that would be solved with that. I thought, if he wants to know more exactly, then he googles himself, I didn’t told him much, why I decided that way. I just said, that I’m not the person anymore, he fell in love with. Of course it would have worked for a while, but where do you elegantly end? Waiting until he says “I don’t want to wipe your nose” would only hurt unnecessarily. I think, it certainly plays a big role, that you don’t like your body anymore and you don’t trust your own body, you see that you can’t do certain things anymore and it won’t get any better anymore. My ex asked for a meeting for months and often asked me, how I was doing, which only made me cry, until I blocked him on my cell phone. I don’t know his reaction but I made it for him too. He knows where I live, but he would never show up without an announcement.
When this first overload was over, I was forced to take my remaining life into my hands.
There is no time to deal with this diagnosis, there are existential things to crack down on one.
Now following things are common in Germany, I have no clue if you can use it.
The first thing I did was to apply sick. I lost my job shortly before that (I looked into it later, and it was also on MSA’s account) and I also thought, no matter, because it was very stressful, and I wanted to find something more quiet, anyway. Whatever the case, writing off sick should be the case, because all this stress and then going to work – that’s almost impossible.
I have searched a lot on the Internet, also sought advice and connection, above all I wanted to find a patient who has defeated this disease, but unfortunately this did not happen. But I found many other things. In this way I got to know Marion and finally I didn’t feel alone. We have exchanged extensively.
I have never dealt with anything like this before and I have had no idea what to do.
My recommendation (I have gained experience):
- Join a social association (about 5 Euro membership per month). They will represent and help you if you have to deal with different organisations. And you will.
- Apply immediately for a disabled person’s identity card, from the day you apply for it, you will be able to take advantage of the benefits. You can also apply online, you have to google a bit. In Bavaria these are the welfare offices. Don’t get fobbed off with anything below 50% (a social association will be useful there). For example, they have only given me first 40%, which is totally over reality.
If you speculate on a severely handicapped parking lot, you will only get it with the mark aG in the severely handicapped pass – which you will hardly get. I have a certificate from my doctor, it doesn’t help. As long as you can walk, have your eyesight and your both legs, you won’t get it, no matter how often you fall on the street and no matter how hard you suffer from incontinence.
- Apply for a care level by your health insurance company, but be smart and prepair yourself beforehand.
A social association can also help.
The health insurance company sends the a person from the MDK to your home, and I believe they earn on every rejected case.
No false ambition or pride, getting care level 1 is a big thing. For example, I got zero points at the first visit, 4 or 5 points at the second try (contradiction) (for care level 1 a little more than 10 is necessary). I could have sued on the social court afterwards, for which I simply lacked the energy. That I cannot put on support stockings without help, cannot clean windows, have difficulties in the bathroom, everything belongs there. And, she doesn’t care what tomorrow can be, she only cares what is at the moment.
A care level means financial and/or practical help.
- For all those who live alone: apply for home emergency call. With the Johanniter or Maltesers or something similar. If there is a risk of falling, it is a good feeling “not to be alone” and promotes mobility, because you are more confident. And, with an approved level of care, the health insurance company covers the costs.
- Get a Euro key for disabled toilets (a disabled person’s identity card is required). With this key you can unlock the toilets all over Germany. There is also an app that shows all disabled toilets nearby. With GPS, Internet is not necessary.
Important for all with incontinence issues! Costs for the key: 23 Euro.
- Rehab. It’s gonna end with retirement. That’s a hard one to swallow, but that’s how it is. It makes sense to delay the rehab, there is sickness benefit one and a half years, and tis is usually more money than the pension. As long as you are on sick leave, your time will run into the pension fund. But beware, the alliance can/will provide you with a retroactive pension, i.e. at the time when you were on sick leave.
Before you can claim your pension, you have to do a rehabilitation (in my case it’s approved 4 weeks, plus here in the rehabilitation the doctors have added another week. Marion was 8 weeks in rehab!).
In rehab there’s something like “occupational therapy”, that’s a bit hard, because you’re shown what you can’t do. There will also be a test with the help of which the doctors can explain why you should get the rent. The association would of course send you to work. I was still working on my diagnosis (about a year ago), but in a year I have worsened so much, that it is almost impossible.
Which I don’t (yet) know, how often you can do rehab. In my case it is difficult to say what it will do, because I also do a lot at home, but it will do something. What you can/should do is a complex therapy (as a rule you can do twice a year), which many hospitals offer and it takes 2-3 weeks (it is also called “small rehab”), the program is rather designed for Parkinson’s, but you get an individual care.
The whole topic of rehab is a huge mountain of paper.
- Request, if necessary psychological help. I asked my family doctor for help, there is a service that can helps (he gave me a phone number that you can call, and there recommend 3 free psychologists). But it can also take a while. If you need urgent help – which wouldn’t surprise anyone – contact your doctor.
- Prepare yourself to educate medical staff, also doctors, but also your relatives, because this disease is very rare.
- Take care of your will and the future. No simple subject, your GP and the person of your trust will help you.
- Do a lot of sports, exercise, talk a lot. Stay active and do challenging things. PT, OT and speech therapy are obligatory.
If any of you think of anything useful, you are welcome to write in the comment field.
Now, a few months later, I see that life goes on despite everything and I continue to fight – was wondering in the first two months, why should I? So that the misery lasts longer? A lot is happening in research at the moment, who knows, maybe we will experience helping medicine. And then we want to be in good shape, don’t we? And don’t expect what’s predicted, most doctors are just poking around, and I’ve met a lot of patients who have exceeded the 10 years survival prognosis by far and are not in a wheelchair or on feeding tube.