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.

Leave a comment


  1. Lianne

     /  September 19, 2014

    Well I don’t think that doctor gave a very fair assessment. It sounds like you are very motivated and do go to all kinds of therapy. I think your limits are very reasonable. The doctor, who, I’m assuming, has no physical limitations, should really try to consider it from your point of view.

  2. Thank you, Lianne! And I really hope “better late than never” is true in this case…
    I’ve been thinking about this a lot and it feels like considering patients as individuals is too much to ask at this clinic. Maybe because it’s a research facility and I’m just one of their subjects. Which would also explain why I hate going so much… Anyway, it’s not me, it’s them. Thank you for backing me up!


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