When ALS Gets Real…Life Doesn’t Change

ALS has been a disease I was diagnosed with that has had little, if any, negative impact on my life.  This is because the support and love from friends and family have made any limitations I have run into seem insignificant compared to what I have received.  Inwardly though, I have wondered how I would feel about this balance as the disease progressed.

Two years and three months have flown by since August 2016.  I have lost about fifty pounds, however I still eat well and have no dietary restrictions.  I do eat slower though.  This is to insure food goes down the right tube because an occasional object will attempt to run naked down to the quad (Old School reference for the uneducated).  My weight loss translates to muscle loss, which in turn leads to loss of function.

I cannot walk and chew gum any more.  Falling is an ever present possibility, but the rescue can be just as dangerous.  The last time I fell one of my rescuers, who will remain anonymous, clocked me in the head twice with a camera lens.  Grip strength and pinch strength also have been dramatically affected.  It’s amazing how often we grip or pinch to open items – jars, zip bags, just about anything that is in packaging.  My speech is different now and often needs repeating, unless the person I am talking with cannot understand me and they just kindly nod their head and smile not wanting to offend me…you know who you are.  🙂

So, ALS is starting to get real.  It is starting to chip away at my independence.

The balance is still way in my favor!  Love y’all.

1 thought on “When ALS Gets Real…Life Doesn’t Change”

  1. Graham & Dawn,

    Love you guys! Hope all is well in Cincinnati.

    There was a new drug approved for Wernig-Hoffman disease or spinal muscular atrophy, an ALS-like motor neuron disease of infants, Spinraza (nusinersen), an mRNA oligonucleotide agent administered ‘intra-thecaly’ directly into spinal fluid….may be worth discussing with your Cincinnati neurologists, maybe some application in ALS patients?

    Latest recruiting NIH studies on ALS: https://www.clinicaltrials.gov/ct2/results?cond=Amyotrophic+Lateral+Sclerosis&term=&type=&rslt=&recrs=a&age_v=&age=1&gndr=&intr=&titles=&outc=&spons=&lead=&id=&cntry=US&state=&city=&dist=&locn=&phase=4&phase=0&phase=1&phase=2&phase=3&fund=0&fund=2&strd_s=&strd_e=&prcd_s=&prcd_e=&sfpd_s=&sfpd_e=&lupd_s=&lupd_e=&sort=

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