What a difference a doc makes, Part 2

A few weeks ago my Ayurveda doctor came to Berlin. Which was wonderful because I really wanted to talk to him and this way I didn’t have to go to Nuremberg (or India!).

I had been getting frustrated and stressed about taking the Ayurveda medication six times a day. This is apparently not uncommon for European patients. He explained that typically Indian patients would take their medication more or less when they were supposed to but mainly when it suits them and fits into their daily routine. European patients on the other hand often set alarms (I did.) and that can become stressful (Yes!) and feel like the medication is controlling your life (Exactly!). So his advice was to be less European, get rid of the alarm and play it more by ear. Oh… Oh no…  I am apparently very European (German and structure-needing!), so this suggestion really made me nervous. It took me about a week to switch off all six alarms. But I did eventually and I’m much happier for it.
The other thing that makes my life a lot easier is that I’m allowed to put the patchouly-incense-tasting powder (that turns to slime in my mouth) into capsules. Well, I can’t do it myself, so shout-out to my dad who does it for me – thanks dad! And while I am acknowledging parents… I don’t think I’ve mentioned that my mom (who always says she can’t cook) has been cooking the most delicious Ayurvedic food for me. Thanks mom!

My Ayurvedic doctor was really strict about one thing though: I have to sleep more and specifically go to bed earlier. I had been going to bed around midnight… And really I should be in bed by 10pm. At the latest. We talked about creating a bedtime ritual to help me fall asleep. But I realized afterwards that I already have a ritual: going to bed IS my ritual! The normal going to bed stuff (going to the bathroom, brushing my teeth, closing the curtains, taking my clothes off…) that would take a healthy person maybe 15 to 20 minutes, takes me an hour. So, that’s my ritual. And just before turning off the light I do a short 3-minute Kundalini yoga meditation, which takes me… 3 minutes!
At first I thought it would be impossible but by now lights out at 10pm has become normal for me. The fact that spasticity and pain don’t allow me an uninterrupted night’s sleep is a different story…

But the main thing was that the appointment in general was encouraging and reassuring. I feel like I may finally be on the right path. The disease has been progressing despite the Ayurveda medication but maybe progressing a little slower… I’m not entirely sure, it’s so hard to tell. But I feel better in general, more stable. So, here’s hoping!

My semi annual ALS clinic appointment – What a difference a doc makes, Part 1

The appointment was July 8 and… What can I say, I’ve had a lazy summer.  But I haven’t forgotten (it’s usually a memorable experience) and I want to share what happened.

So. It looks like I’ll be going twice this year. Although I hate the ALS clinic. And I was reminded why at the beginning of this visit: I had to go to the bathroom and their toilets are really low, making it difficult for someone with less than perfectly healthy legs to sit down and get up.  And at the sink the faucets were high up and difficult to turn. At the ALS clinic. Where surely I am not the only one with symptoms of paralysis in the hands, arms and legs. So I wonder: Are they purposely trying to make patients feel bad? Or are they just thoughtless? It’s probably thoughtlessness but… Yikes!

Things got better though. (Really, I am not being sarcastic.) My last appointment I had a male doctor who was really negative (“Everything is going to get worse and you better get ready for it”). This time I had a female doctor who was much nicer and less negative, and that became apparent almost immediately: I always have to take a lung capacity test at the beginning of every appointment. Last time I scored 95%, this time only 78%. I was a little upset about that, especially since I hadn’t noticed any changes or difficulties with my breathing. And this wonderful doctor said: “Well, don’t forget that we only looked at 3 breaths for this test. So, if you don’t have any trouble breathing in real life, I wouldn’t worry about it.”  Okay then, I won’t!

We also talked about my weirdly overactive gag reflex and she said that probably wasn’t ALS-related. And now I feel stupid for having mentioned it in this blog at all but there you go, that’s part of my situation, too: whenever something weird happens, I generally assume it’s my ALS getting worse. Not this time, apparently. And my gag reflex has calmed down considerably, so who knows what that was.

Another fun topic that usually comes up at these appointments: medication. Riluzol.  That’s the only medication available for ALS… uhm, “treatment”. It can prolong the patient’s life by about three months (as shown in the clinical trial to get it approved). So I decided not to take it, it doesn’t seem worth it.  And… I don’t want to go through my entire thought process but since this is the first time I’ve mentioned Riluzol, I would like to briefly share what the different doctors (all neurologists) with whom I talked about this, had to say:
Doctor 1: “It has horrible side effects, I wouldn’t recommend taking it.” (The information about side effects is apparently not true, so maybe this guy should’ve just stuck to talking about football players who have died from ALS…)
Doctor 2: “I don’t know about the side effects but since your ALS is progressing slowly, it probably wouldn’t help you much anyway.”
Doctor 3: “It doesn’t have very strong side effects because it doesn’t have a very strong effect. Unlike chemotherapy for example, which has a very dramatic effect but also dramatic side effects.” (I love it when doctors make sense!)
Doctor 4, when asked how and how long I personally would benefit from taking Riluzol: “I don’t know.” (I also love it when doctors are honest.)
Doctor 5: “You should definitely take Riluzol. In our experience it can prolong patients’ lives much more than three months.” (This is anecdotal evidence which usually doesn’t count for doctors. Unless it’s their own anecdote…)
And at this appointment, Doctor 6: “”It has very few side effects, so why not?” Like I said, this doctor was really nice but… That’s a weird reason for recommending a medication! So, thanks but no thanks.

Anti-spasticity medication on the other hand I was happy to try. Well, not happy but desperate enough, since I had been waking up from pain and spasticity in my legs every night. The doctor prescribed baclofen, wish I guess is an anti-spasticity classic. I’ve taken it twice and it doesn’t really work for me. It takes the spasticity away at first, making me all wobbly. But the effect wears off by 3am, so I wake up like I always do.  And I don’t really like taking medication, so I gave up on it and was sleeping better anyway for a while. But lately the spasticity has gotten worse again and it’s creeping up my back now, so I will be looking for different options.

We talked about one more thing that was… difficult: an advance health care directive. Specifically, I should think about how I feel about things like a stomach tube and ventilatory assistance. I know this, of course. I’ve just been successfully ignoring it. Terribly mature, I know. But I’m thinking about it now. I don’t have a conclusion yet.

So. To end on a lighter note, turns out the nice female doctor wasn’t all that… We talked about my regular appointments and she expressed surprise at the fact that I only go to physical therapy once a week. I explained that I go to physical therapy, occupational therapy, psychotherapy and osteopathy, and I benefit from all those appointments and they are important to me. But that also means I’m really busy and I can’t do more than one appointment per day because I get exhausted and it’s nice to have one day off. Also, I practice on my stationary bike every day and I do my physical therapy homework and I’m sure I do it right, being a former Pilates trainer and all. Anyway, in her written report she said: “Patient is not motivated for a higher frequency of physical therapy.” Uhm… Thanks a lot!

I’ll be back in November.