Physical Changes

I really hope that in writing this blog I can answer the questions I get asked regularly.  One of the most common, concerns how my body is physically changing and the impact these changes are having on my life.  It isn’t as easy as googling “effects of ALS”, because just as no two snowflakes are identical, neither is the presentation and progression of ALS the same in two individuals.  Some people notice a weak leg or arm as their first symptom while others may have difficulty speaking, or walking without their foot dragging.  Still others find themselves getting winded as they climb a flight of stairs, or having trouble swallowing certain foods.  Besides the onset of symptoms there is also a huge variation in the rate of disease progression.

People want to know how I am changing and adapting physically.  For those who don’t know me or my journey as well, I will start at the beginning.  In May of 2016 I rolled over in bed one night and reached for the glass of water sitting on the nightstand.  I grabbed it, but midair I felt like I was going to drop it; my grip was really weak and holding on required deep concentration. Over the next few weeks I started having trouble holding a pen and performing tasks requiring fine motor skills.  Finally, after about three months and no improvement, I went to see my family doctor.  She thought I had carpal tunnel.  Oh how I wish!  Four months later, in December 2016, I was diagnosed with limb onset ALS.

From my right hand, arm and shoulder the weakness began spreading to my left side.  In February 2017, I noticed that my left hand was beginning to lose some strength.  Today, I have lost a significant amount of muscle in these areas. I can no longer lift a utensil to feed myself, nor can I brush my own teeth or hair, or use my fingers to type or change channels with the remote control.  I still have movement in my arms and hands and can lightly grasp objects.

Walking became a struggle around the summer of 2017.  The strength in my legs remained, but because my legs were so stiff I moved like the Tin Man, ready to topple over at any moment.  This extreme stiffness, referred to as spasticity, occurs when certain muscles are continuously contracted.  It is a very common side effect of ALS.  In December 2017, because of a few wipeouts, I started using a walker and by the summer of 2018 until today I get around mostly by wheelchair.  Although I have definitely lost some muscle in my legs, they continue to be fairly strong, my left one in particular.  I am still able to weight bear and walk short distances with assistance.

I started experiencing further ALS symptoms in October 2017, when I could feel my voice changing, getting hoarse and not as loud.  Early 2018 I began having difficulty swallowing certain foods and would choke if I tried to drink too quickly.  Today I rely mostly on a computer to help me talk, although people I see regularly can still understand a little of what I say.  I will often attempt to spell a word but it can be quite a challenge if the word contains a b, c, d, g… any of those that rhyme, because with my voice the way it is, all of the letters sound the same;)  Frustration for all involved!  Five months ago I had a feeding tube placed in my stomach to help supplement my nutrition.  I use it mainly to keep me hydrated, take supplements and have my dinner.  I still eat breakfast smoothies and pureed soup by mouth.  The last breathing test I had done over a year ago revealed 50% capacity and less when lying down; I am sure that those numbers are lower today.  I am very grateful that so far my breathing hasn’t really impacted my daily life.

As you can see I have undergone many physical changes over the last three years and wanted to bring you all up to speed on what my present reality entails. When speaking of my physical condition I prefer to use the word changes as opposed to decline; changes can be adapted to, but decline just sounds so negative and hopeless.  I will share more about the adaptations I have made and why I choose to be hopeful, in future posts.

Thanks for reading ❤️