Welcome to my Blog!

First, I would like to thank everyone who has reached out to my family and me over the past five months.  Your compassion is truly touching and immensely humbling, making me feel like a real-life George Bailey.  I need to thank my sister Shea and the corps of family and friends who have taken on the lion’s share of what you have seen and heard to date.  A special thank you to Michaelson Homes and their fantastic crew.  Each of these folks’ kindness and caring has allowed Dawn, the kids, and myself the time to refocus and to reprioritize, which until recently I did not know how important that would be.

It is now time to share my voice.  I plan to use this blog to let folks know about my health as I realize that is a common concern and question.  However, I also plan to comment on other topics, so reader beware.  I promise to blog only on occasion and will try not to prattle on like my aforementioned sister.

Today, I shall cover where my health is today and how my ALS journey began.

Currently, I have weakness and muscle atrophy in my left leg, which has led to my biggest issue – foot drop.  The foot drop causes me to adjust my gait and thus to limp.  Running is out of the question unless someone yells fire multiple times.  I can walk unaided, but I use a walking stick for added stability and, more importantly, to get people out of my way.  It works like a charm.  I also have muscle weakness in my left hand.  I notice this mainly doing small motor skill activities like twisting a jar top or buttoning my shirt.  However, my strength overall is not bad, I can do 40+ pushups and knock out 10 pullups.  I do these around once a week to give myself an objective metric to gauge progression.  I plan on hitting the gym on a regular basis to try and regain some of the aerobic stamina I feel I have lost.  The fun part about this is that everything I do is an experiment and I am in control, as the medical world has made very little progress with this disease.  What better way to battle this SOB.

My every day symptoms are frequent muscle spasms and the occasional cramp.  The spasms occur in all parts of my body and they range in feeling from a quick twitch to a vibrating cell phone.  Yet, these are never painful.  What could be classified as painful is the cramping.  Like the spasms, I cramp in all parts of my body (feet, hands, legs, arms, back, stomach, and neck) and I believe people know what a cramp feels like.

The good news is that over the past five months I have had minimal progression.  Not just according to me, but also my neurologist.  The more he sees me the more he tends to agree with all of the people who believe that I need to see him for neurological problems other than my ALS.

I was diagnosed at UC Health back on August 16, 2016 with a second opinion from The Cleveland Clinic confirming the diagnosis on August 30, 2016.  Knowing what to look for, I would say I began showing symptoms back around the spring of 2015.  I tore a ligament in my left knee in college and began to have problems with that knee in 2011.  In early 2015, the muscles in my left leg noticeably started to atrophy, which I attributed to my left knee.  No worries, I will get it fixed later.  In the fall of 2015, muscle cramping at night came more frequently, so I ate more bananas and drank more water.  I also started to lose control of my left big toe.  Once again, I attributed this to my left knee.  By January/February of 2016 I developed a limp.  Folks began to ask me about it and I figured I could wait until the end of lacrosse season to get it fixed.  In May of 2016, I finally went to an orthopedist, who had an MRI of my knee and lower back performed.  He also had an EMG performed by a physiatrist.  The EMG suggested that I may have a motor neuron disease.  I saw a neurosurgeon, who was not much help, and then a neurologist.  A few tests later, including another EMG, and the neurologist confirmed the physiatrist’s findings.

So that is it in a nutshell.  Hope this helps answer questions you may have had, but felt awkward asking.  If it does not provide answers, feel free to ask.  There is no bad or awkward question.  The more I know and the more you know, the more quickly we may approach a worthwhile treatment for the disease or maybe even a cure.

Game On!

10 thoughts on “Welcome to my Blog!”

  1. Thanks for the update coach! For those wishing to get up to speed on the latest bio-medical research and find the cutting edge of science for ALS (and other related diseases) good places to start are:

    a. Cochrane Neuromuscular Disease Group: http://neuromuscular.cochrane.org/cochrane-neuromuscular

    b. Get familiar with http://www.clinicaltrials.gov for latest on phase I, II, III trials of interventions and drugs to extend life and reduce adverse effects of ALS. For example there is a trial recruiting patients in KY, Cleveland, N. Carolina, and a few other states aimed at reducing cellular inflammation associated with ALS motorneuron disease: Safety and Efficacy Study of NP001 in Patients With Amyotrophic Lateral Sclerosis (ALS) and Systemic Inflammation.

  2. Love reading your stuff and as always hearing your unique perspective on anything and everything.
    Got to speak on you at Lovett chapel last month to raise funds and awareness.
    Carry the Fight brotha!!

    Running Bear

  3. Thank you for the update Graham! We join so many in praying and cheering for you. Game on indeed. Kevin Burke

  4. Well done Graham! Look forward to reading more.
    Would love to hear your take on the B2B trip.
    Best, JG

  5. Sending lots of love as I head back to the Himalaya, Graham! I think you’re all amazing, fight on … Perhaps a trek in the Himalaya is just what you need! Incredible things happen out here … (-: xo

  6. Hey Graham!! You’re a fighter and a warrior. I always knew that about you. Seems those skills will be in high demand . Thinking about you and the days long ago.

  7. Graham, hope all is well. I pray for you every morning, and for Dawn and the family. Would love to reconnect soon and grab a beer, coffee, anything. Go UNC, and go Graham-bo!


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