ALS Clinic #3 - December 10, 2014

Today was a long and exhausting day.  Kim and I got up at 5:30 this morning and were at Hershey Med Center Neurology at 8AM for my third quarterly ALS Clinic.  Fortunately the snow passed us by last night.  There was some good news and some not so good news.

My Forced Vital Capacity score was 84, down from 89 in September and 96 in May.  To be honest, I expected it to be worse because of the difficulty I have breathing at night, which is related to my chronic sinus condition.  While it was disappointing that it went down, I am happy that it wasn't worse.

The reflex tests were exaggerated indicating nerve and muscle damage.  Occupational therapy evaluated my arm and hand strength.  My right hand (dominant) grip strength was about 60 pounds, compared to 80 pounds for my left hand.  That explains why my handwriting is getting worse, it takes me longer to do almost everything, why I have some trouble shaving in the morning, have trouble opening things, and am dropping things frequently.  My weight was down several pounds also, which they have been cautioning me about.  It is hard to eat when I am at work, and it takes me a long time to eat a large dinner - about 45 minutes.

They didn't find a major loss of strength in my legs, but they feel very spastic to me and I cannot walk as smoothly or as quickly as I used to.  When they tested my ankles they found some catching, which may explain part of my walking slowdown.  However, I can still do 30 minutes on the treadmill without getting out of breath or feeling like I am going to fall, just at a slower speed than I used to walk.

The good news - swallow is still good, not much change since September.  Surprised everyone since my speech is completely gone for all practical purposes.  My blood pressure was good.  The physical therapist walked me down to the PT room observing me as I walked and then had me walk up and down 4 steps 3 times and didn't notice any balance, strength, or wobbliness issues on the steps or on the walk down the hall to and back from PT.  She did say that I walked with my head forward, but we think that has been the case for a while.  She suggested I should work on my posture and try to get my keyboard and computer screen raised more to my eye level to keep my head up.

The push is on for me to agree to let them install a PEG feeding tube to ensure that I am getting enough food and fluids and to help prevent me from aspirating food into my lungs.  The feeding tube would be directly inserted into my stomach and it would be fairly inconspicuous, although it might be noticeable if I wear a tight shirt.  The doctors, nurses, and nutritionist indicated it wouldn't limit my ability to travel or do any physical activities.  They suggested that I might want to do this sooner rather than later.

We also talked about a diaphragm pacer that may help me long term before I would need to use a non-invasive ventilation system such as a BiPAP.  Can often delay the onset of using an NIV by a year.  The diaphragm pacer system requires an external power pack that must be carried everywhere, which may be more limiting in terms of travel and normal activities.

Both devices could be installed at the same time on at outpatient basis.  Lots to think about and I am not in a hurry to make a decision on such important topics.

I also asked to be tested for mercury toxicity, and Dr. Simmons agreed to write the lab order for me, although he indicated that he didn't feel that we would find anything.  My first symptoms started a week after I received my flu shot last year.  I didn't realize that most flu shots contain Thimerosal, which is a preservative that has organic mercury in it. 

I have been severely grinding my teeth for more than 6 years, and I have a lot of large amalgam fillings in my molars.  I knew amalgam had mercury in it, but I was very surprised to learn recently that amalgam contains 50% mercury!  Mercury is one of the most toxic substances to the human body, and can cause sinus issues and brain and motor neuron damage.  My sinuses and gag reflex have gotten worse every year that I have been grinding my teeth at night.  I have several mouth guards, but my terrible gag reflex means that I often cannot tolerate one in my mouth at night.

These days, I grind my teeth 24x7 due to the muscle spasms in my face and jaws, and I can feel my fillings disintegrating, which means that I am ingesting more mercury into my body in addition to the mercury vapors that leach from the fillings.  Since the teeth are so close to the brain, sinuses, and eyes, amalgam fillings can cause significant bodily damage.  I am anxious for the tests and to see what the results are.  I am educating myself on amalgam mercury toxicity and treatments.

I gave three vials of blood for two ALS research projects today.  Heidi had trouble finding a vein in my right arm so we tried my left arm and eventually found a vein, but it came out as a slow drip, and filling 3 vials took more than 10 minutes.

We finally got out of the ALS clinic around 12:30 and headed to Panera's for a bite of lunch before driving over to Nyes Road for my annual dermatology checkup at the Hershey Med offices at 2PM.  No major issues again this year, but about a dozen sun damage places frozen off my face and head.  Finally got home around 3:30.  Kim and I were both exhausted!

The day was emotionally and physically draining, but all in all it was a pretty good clinic report.  So it's early to bed tonight after a full day missed from work and back to the office and PA Turnpike tomorrow.