My annual ALS clinic appointment

Berlin has a big University Hospital called the Charité and they have a special clinic for ALS and motor neurone diseases. I had my first appointment there last year to confirm the ALS diagnosis (more about that in “The story so far” if I ever get around to writing it). My plan is to go about once a year to see if they have any news and to hear what the “experts” have to say about my particular case. It’s usually quite depressing and difficult and it takes me a while to get over it, so I can only handle that once a year.
I just had my appointment this year, on Monday, December 2. And I want to tell you about it. There’s good news at the end, I promise. But we’ll have to get through some scary stuff and something infuriating first.
So.

The scary (nagging suspicions confirmed):
I was asked if I can still turn over in bed by myself. And I can. But it’s difficult. I haven’t been sleeping well because I keep waking up. I assumed that was because of my SI joint pain. But I’ve also noticed that turning over in bed is a struggle and I’ve had this suspicion that that’s waking me up. So… scary. What if I keep waking up? What if this gets worse?
Then they asked me if I had trouble talking. And I do. I can’t talk as fast as I used to right now and sometimes I have to really concentrate on my pronunciation to say some words clearly. Really scary. What’s next? Take away moving and talking, I feel like there’s nothing left of me.
And then they asked if I had noticed any unwanted/uncontrollable laughing or crying. Yep. Laughing. Which, I guess, is better than crying. But really weird and annoying. I mean, it’s not like I laugh out loud inappropriately. It’s more of a mimic thing, I can’t always control the broad grin in my face. Which makes pronouncing some words even more difficult. And I can’t control my laugh well when something is funny, so I stopped watching funny stuff on TV while eating… But really, this sucks. I feel like, on top of everything else, I’m losing my mind.
They also noted that the symptoms of paralysis in my legs had gotten a lot worse and a lot more spastic (I’d noticed that, too).
And the doctor tried to prepare me for what he thinks is ahead, with sentences like “You have to realize that it’s not going to get better.” ” You will not be able to do that for much longer.” “It’s going to get worse.” Sigh. Thanks a lot. To be fair, he said all this in the context of telling me what help would be available and maybe for some patients that’s important to hear. It didn’t work for me. For one thing, I don’t think it’s possible to prepare someone for this. And fortunately it’s not necessary because ALS progresses very slowly. It’s not like I’m going to be completely paralyzed all of a sudden. It’s a slow process and during this process I think it’s up to me to decide how much I want to struggle with something before I look for help. And… NOBODY KNOWS HOW MY SYMPTOMS WILL PROGRESS, so SHUT UP.

The infuriating:
I’m 168 cm (5’5″) tall and weigh 48 kg (106 lbs.). In other words, my weight is ridiculously low. I know that. I try to eat a lot, while still eating healthy, and it’s a challenge. And I’m not a stress eater, I’m a stress-not-eater and it’s been stressful. But the infuriating part is this: During my last ALS clinic appointment, one year ago, I weighed 50 kg (110 lbs.), so not really that much more but nobody thought to talk to me about diet and nutrition and the importance of maintaining my weight or gaining weight. This year they were all over that! They informed me that there is a definite link between weight loss and the progress of ALS symptoms. And if I lost anymore weight, I would make my symptoms worse. And they are telling me this NOW, as opposed to last year. I feel like I’ve lost a year in which I could’ve really done something, and diet was such a big thing for me this past year anyway. What’s the point of going to this horribly depressing place, when they don’t give me all the information I need anyway?! I was really upset and yelled at the nurse, the doctor and the nutritionist they (finally) had me talk to. She explained to me that while a healthy diet is important, in this case it’s all about calories. While a healthy person my size needs about 1900 kcal per day, with the ALS symptoms I need about 2500 kcal per day. So, for the first time in my life I’m actually counting calories. They prescribed high calorie shakes to add to my diet and I make sure I eat lots of nuts and avocados and I’m adding cream/butter to pretty much everything. It’s not exactly fun but it’s not as hard as I thought it would be.

The good news (finally):
My symptoms are progressing very slowly. If the “average” ALS patient has a speed of 1, I have a speed of 0.4. And the doctor said that’s unusual for such a young patient. Typically if someone gets ALS at a young age, the disease progresses very fast. Not me. And that was a big relief because lately I wasn’t sure if my symptoms were progressing faster than before. I think that was because I’m running out of options: when the first symptoms of paralysis appeared, it didn’t make much difference to my life but now every bit of paralysis added really makes a difference to the things I’m able to do. So, to have confirmation that my symptoms are still progressing slowly was a big relief. And to hear that that is unusual was pretty great, too. I’ll take anything above average or unusual!

So, that was it. Deep breath. Sigh of relief. Until next year.

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