Munich – Montreal

I finally made it. I’m at my cousin’s house in Montreal with no appointments and noticeably less stress. One would think that I’d have tons of time to write my blog now… But I’ve been luxuriating in my stresslessness and my cousin has me hooked on “Türkisch für Anfänger”.
But my head is so full of stuff now that I have to get some of it out. So here goes:
I think it’s fair to say that for the most part during this health challenge I’ve been able to stay remarkably calm. And I’ve kept my inexplicable optimism. There are two reasons for that:
For one thing, I absolutely believe that I have these symptoms for a reason. That there is something I’m supposed to learn here. If asked to describe myself in a nutshell, I would say that I’m a figure skater turned dancer turned Pilates instructor from Berlin and I have lived in London, Chicago, Tsuruga and Kobe. And now I get a rare disease that affects movement only?! That’s just too weird. There has to be a reason.
The other thing is that I think there are three big methods out there that are quite promising in dealing with ALS: Traditional Chinese Medicine (TCM), Ayurveda and Integrative Manual Therapy (IMT). And I am going to explore them one after the other or maybe mix them a bit, depending on what feels right.
So now it was time to start exploring IMT. That’s a fairly recent method developed by Dr. Sharon Weiselfish-Giamatteo. There are not a lot of experienced IMT practitioners in Germany. As far as I am aware, there are none in Berlin but some in Munich. And since my flight to Montreal was going through Munich, I decided to add a one day layover to go see an IMT practitioner that a friend of a friend had recommended. So I flew to Munich on Monday afternoon, spent the night at a friend’s house, had my appointment on Tuesday morning, and then went straight back to the airport to fly to Montreal.
Looking back, I don’t know what I was thinking, stressing myself out like that.
But it was worth it because the IMT practitioner was fabulous! Well, she didn’t start out great… by telling me what a horrible disease she thought ALS was and how cases like this were so upsetting to her and her colleagues. Uhm… Sorry to bother you? What am I supposed to say to shit like this? But she got better and it seems that she has some experience dealing with ALS and has had some success in treating it although she has not been able to heal it completely yet. She thought that my case was unusual and that there might be something else going on (which would be great!) because my paralysis symptoms have more spasticity than she has seen in ALS patients. And because my attitude is different: I’m absolutely determined to fight this and I’m convinced that there is a solution. She said usually ALS patients have an attitude of calm acceptance… What?! I cannot even imagine that! So, she basically confirmed a feeling I’ve been having this whole time: that this is not “normal” ALS, that my case is different and will be different. I know that sounds crazy and like denial but whatever… it’s how I feel. She also said that any kind of strengthening exercises (physical therapy) could be counterproductive. I had thought and felt that as well but… didn’t dare give up strengthening. I mean, I have to fight this muscle atrophy crap, right? I’ve been thinking about that a lot. I think she’s right, strength training probably puts more stress on my already stressed out brain to muscle connections. But I still think that movement is the answer (always), so I’m going to focus my training more on body connections and energy flow, with less ambition for pure physical strength or flexibility. She also told me that an increased need for sleep was quite normal, which was reassuring because I’ve been collapsing onto the couch after strenuous activity such as grocery shopping. I’m supposed to sleep a lot and nap whenever I feel like it. Yay! She also treated me a little bit: I was lying on some mats connected to some sort of machine and there was a strobe light… and it made the muscle fasciculations in my arms go away for a while. So I think it’s promising, that there was a reaction in my symptoms. I’ve sent her all my lab results (pages and pages) and she is going to look over them and talk to some colleagues and then make her suggestions how to proceed.
So then I took a cab to the airport because I was really exhausted and I just couldn’t face S-Bahn stairs and stuff with my pretty heavy overnight backpack. I also hadn’t slept well because I hadn’t slept in my own bed, and I hadn’t eaten since breakfast. Like I said, this whole Munich trip wasn’t terribly well thought out. So at the airport, I decided to accept the help Lufthansa offered, and was taken to the plane in a wheelchair and on one of those golf carts. Bit of a blow to my ego but I think it was the right thing to do because I really couldn’t walk very well. And I got to pre-board the plane which was awesome!
The flight was alright and I discovered two things in the in-flight entertainment program:
Annie Hall, what a great movie! And Elementary looks like a pretty cool series.
And then my cousin picked me up and life’s been good.

PS: I’ve been writing this post for three days and I think it’s coming apart at the seams a little bit and I was probably going somewhere else with it. But I’m going to publish it now, just to let you know that I’m still here.

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  1. I have always wanted to travel in one of those golf carts……! Ok, having got THAT out of the way – I agree, its interesting that the fasciculations responded to that! I am looking forward to seeing how that avenue develops. Was thinking about you today and asking Joann if she’s spoken/written to you. Miss your humour on Wednesdays. And other days too naturally 🙂 But Wednesdays have an Anja shaped hole.
    Hope Montreal is beautiful in the fall.

  2. I highly recommend the golf carts.
    And yes, it’ll be interesting to see how the IMT avenue develops. I’ll keep you posted.
    And I don’t know about Montreal in the fall… in November it’s cold!

  3. Keep fighting the fight.


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