Wednesday, 25 September 2013

A Good News Day

This entry is late today; I was at the ALS clinic all morning. On ALS Clinic days I face the choice of getting up extra early to make sure I can write, or leaving my blog until after the clinic. Today was no exception and I chose to write this after the clinic visit. This way I can share the results in my blog, with a simple update. Except nothing is simple with ALS. Most of these visits are about how much I have declined and what losses I have faced or will be soon facing. Today was different; today was a good news day.

First, my condition seems to be stable at the moment. These periods of stabilization with ALS are very common. Sometimes they last for only a short while, sometimes they last months and even years. In my case, with lower limb onset and slow progression, there is every reason to believe that my condition will remain relatively stable for many months. On the other hand, it is always possible for this damnable disease to change its mind and ramp up with very short notice. So once again, as always, I am compelled to live day to day. Perhaps that is a good thing.

Second, my lung capacity is stable. I have been doing Lung Volume Recruitment with a breathing bag and it appears to be helping my lungs sustain. In addition the doctor found no evidence of moisture collecting in my lungs, also most likely due to the LVR which helps me cough out any phlegm. So all in all, I can breathe easy for a while.

On the downside, the swelling in my feet is becoming problematic. They are concerned that I am developing blood clots, with the attendant risk that those clots might break free and travel up to my heart or lungs, not a good thing. So I am now scheduled for an ultrasound tomorrow at 11:30 AM, where they will rub goo on my feet and pulsate it with sound waves to see what's happening in there.

So I guess you could say it was a very good news day. Slowed progression is always good news. Strong breathing is always good news. While there no way of reversing what has happened to my legs and diaphragm, at least for the moment things are not getting worse. For ALS, that is as good as it gets.


  1. Notwithstanding your current issues being as nasty as they already are, going along with "as good as it gets", I'm happy for you, this is good news.

  2. I'm glad the decline in your ALS has plateau for now. Hopefully this standstill will last months if not years.