Saturday, June 6, 2015

ALS Clinic in March…. (Part 2)


So back in early March I went to my first ALS Clinic.  At that time the only thing going on with any impact on me was some left foot clumsiness.  This meant I walked more slowly and by this time I had stopped running.


When I first went to the clinic they had me fill out the ALS Functional Rating Scale-Revised which can be used to predict survival time.  Here’s a copy of my ALSFRSR at that time:






And here’s my score plotted on a survival curve:


The first clinician I met at the ALS Clinic in March with was the Respiratory Therapist.  He performed Pulmonary Function Tests (PFTs) on me.  Interestingly in all my years attending in the hospital I never had a PFT test, although I had seen a number of them done.  To make a long story short – the Forced Vital Capacity (FVC) is the most important test.  This test is done by breathing into a tube – taking the biggest breath you can, the exhaling as much and as long as you can.  It sounds easy but it’s remarkably hard.  It took me 4-5 tries before we got a good result. 

The reason why the FVC is important is that people with ALS die from respiratory failure because the muscle that help you breath stop working.  ALS has very few therapies which extend your life.  There are currently really only two – a drug called Riluzole (Rilutek) which extends life by an average of 2 months, and using BIPAP at night (it’s similar to CPAP).  BIPAP extends life by 18 months on average.  When your FVC gets to about 50% of predicted, they put you on BIPAP.

Well the good news was that my FVC was 110% of normal – possibly due to my running.

Other things that were covered in the clinic included the natural course of the disease, the need for possible Voice Banking, ordering a cane as well as an AFO, and started me on the medication Riluzole. 

At end of the visit they scheduled to return in three months to check how thing were progressing – that follow up clinic visit occurred earlier this week.  I’ll post an update soon about my most recent ALS Clinic visit. 


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