How is Patrick Doing? #1

The question is often asked, "how is Patrick doing."  So, we've decided to write occasional blogs that answer this question...

For background, Patrick's first symptom was feeling fasciculations or twitching in his right hand in May 2012.  By September, weakness in his right hand set in that prevented him from doing the simple task of squeezing finger nail clippers.

After a fall, while kneeling in front the house, Patrick and I decided that he should see his doctor.  After a visit, the doctor referred Patrick to a neurologist.  After an initial visit with the neurologist in October, Patrick had an EMG, nerve conduction test and an MRI of his cervical spine.  In a follow up visit with the neurologist in November, the neurologist gave a probable cause as ALS and referred Patrick to the Forbes Norris ALS Clinic in San Francisco for a second opinion.  In December, the neurologist in San Francisco confirmed our worst fear. 

An ALS patient's most difficult area is where their first shows symptoms appear.  For Patrick this is his right hand, and by far this is his most challenging area.  He has lost strength, has limited fine motor skills and cramping in this hand.  The only positive thing is that Patrick is left-handed which we've heard is often the case, it affects the less dominate hand first.  It's interesting the things they know like patterns and yet so much that they don't know.

Fine motor tasks like buttoning your shirt, turning the key in the ignition, or opening a water bottle are difficult or no longer possible.  Fortunately, we purchased a new vehicle last year that has a push button ignition, voice activated navigation and phone, and has an easy shift to put it into gear.

Since driving the new vehicle doesn't require fine motor skills he still drives without problem, although getting in and out must be done with care. Sadly, the Corvette with its key ignition and 5-speed gear shift along with sitting low to the ground has made driving the Corvette for Patrick nearly impossible. This saddens both of us since he's always been such a classic car guy and drove it every Friday, affectionately called "Corvette Friday."  As I've said, ALS is a series of losses...

One of the consistent symptoms of ALS are the constant fasciculations, starting first in Patrick's right hand, they have progressed to his right arm and shoulder and now to his left side.  These make it difficult for him to sleep and he'll often tuck in his arms in an effort to limit them, since it makes sleeping uncomfortable.

Another of the symptoms of ALS is a heightened sense of nerves and reflexes.  We've all been startled or jumpy - this is increased with ALS and I've startled him a few times over the past month.  I patted his arm at one point and he said it create an unpleasant jolt in him.  At Christian's birthday party at John's Incredible Pizza Place all the flashing lights and sounds in the amusement area, were overwhelming to him and he couldn't spend a lot of time in that area.

Patrick continues to be the fastest walker in the household and at Disneyland we continued to struggle to keep up with his walking.  Occasionally his balance will be a little off and he does drift to the side sometimes but I doubt you'd notice much other than a little stiffness in his walking.  It's difficult for him to stand in one place for any period of time, staying in motion is easier.

With the loss of motor control, Patrick has to pay greater attention to his movements, complicated motions that require multiple muscles are difficult.   By thinking about the motions necessary and moving slower he has less balance issues and is less likely to fall.  At this point, he's only fallen a couple times over the past few months and it was when he was squatting down to do something.

With ALS, the body is continually working, which causes fatigue and burns a lot of calories. One of the first things they tell you, is don't go on a diet, an ALS patient shouldn't lose weight. Patrick gets a lull and his energy level dips dramatically in the late afternoon each day.  We are trying to recognize this period and adjust activities accordingly.

Based on the discussions with the doctor, Patrick is considered a slow progressor and will likely go beyond the usual 2-5 year life expectancy.  Since he first noticed symptoms back in May, 2012 he has seen changes throughout the year, but it does appear to be progressing slowly.  At this point there are no changes in his breathing or swallowing which are the life threatening aspects of the disease.

I wish this post were more uplifting but frankly ALS is an awful disease and the constant series of losses and challenges are difficult.  Patrick continues to amaze me with his attitude and spirit - you can't choose what is thrown at you, but you can control how you manage it. 

A huge thanks to those of you who help deliver Girl Scout cookies, open water bottles or doing small acts when you see a need.  It uplifts the spirit!