Early signs of ALS in my experience

Back in 2004 -so roughly 5.5 years before my diagnosis- I began noticing odd things.

Over the holidays that year I was stumbling alot. I fell in a parking lot of a King Sooper in Parker Co. while visiting my brother for the holidays. I chalked that up to exhaustion along with dozens of other stumbles in the following years. I made excuses for lots of things…I had a high powered executive position, “The Hot seat” they called it, which demanded 70-80 hours a week.

It was difficult for me to wind down at night, so I often had the experience of working intensely for long periods of time and the crashing over my vacations. I was a bad friend, if I didn’t also see you at work and a non-involved family member. I share this because I believe the constant press of that work enviroment had alot to do with how I developed ALS. But more on my pet theory later…suffice to say that most people who contract ALS are type A movers and shakers, elite athletes especially in football and soccer and combat military veterans. Keep in mind only 10% of ALS is familial, a full 90% of people who develope ALS do so spontaneously.

Early warning signs and their rationalizations:

Stumbling over pavement and occasional falling (perhaps from a newly dragging foot).

Occasional double vision from afar- for a few months when I looked across the room at the wall clock there would be 2 of them before there was 1 image, just a momentary blurring, I just figured I was getting old.

Muscle twitching in the eye area and across my face.

Trouble breathing in the missionary position during sex: what I thought was me getting fat was really weakened muscles in the diaphragm.

Making odd noises while breathing when sleeping or when relaxed from drinking alcohol: I began to have an involuntary growl as I exhaled especially after a night of drinking more than 1 or 2 drinks.

Easily winded frequently where you were not before, again I thought I was just gaining weight and out of shape.

I lost 1/2 a shoe size with out the corresponding weight loss.

I noticed my hands looked skinnier, which was odd given I hadn’t dropped more than 25 lbs and was still a good 50 lbs over weight at the time.

My speech began to slur temporarily in the middle of a 12 hour workday.

Speaking slower, this may be almost imperceptible at 1st…I noticed when I was leading a training program it was harder and harder for me to get through all of the material in the 5 hour classroom.

If I tried to do sit-ups I would get horrible charlie horse like cramps in my abdomen from under the ribcage to my pelvic bone.

If I tried to stretch out my thigh by grabbing the top of my foot and pulling it towards my butt, my hamstring muscle would cramp severely.

If I turned at the waist sharply or when handling weight I would get a stabbing muscular pain along my ribs, which was only alleviated by touching my toes and perhaps pulling my vertebrae apart in that position -this is probably more of a chiropractic issue but I wanted to mention everything I can think of.

A new and perhaps slight difficulty opening jars or twist tops.

Occasionally dropping glasses or beverages, spilling things, being clumsy in general with one’s hands or in your balance

Nerve pain in the ball of your foot while walking longer distances.

Suddenly spitting out a drink unwillingly, or frequent choking while swallowing.

Now not all of these things happened simultaneously and many were separated by months or weeks in occurance at 1st. It’s strange how we can acclimate to a quirk or a pain as human beings. In my mind I was just turning 40 and knew I was a good 65-70 lbs over weight. I was walking long distances from time to time but not regularly exercising or working out to any of my old capacities. it’s only in retrospect that I see them all together as a series of early warning signs that something is up.

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4 Responses to “Early signs of ALS in my experience”

  1. Lynne Jordan says:

    This is so informative and I have totally attributed so much to weight gain myself – a lot of the sympoms you mentioned. No wonder you didn’t see it. wow

  2. Ann Palmer says:

    I just read the article in today’s Tribune, and my heart goes out to you. However, I wanted to extend some hope to you since for about 10% of people with ALS the disease is long-term and chronic, not necessarily terminal, and they are doing research all the time and might come up with a new treatment. I have a childhood friend whose had ALS for 9 years and counting, and he still enjoys life, albeit with limitations. He uses a child’s erasable writing board to communicate, and that seems to work well. Just a thought of getting a light-weight writing board that children use. Anyway, I hope and pray your illness is the long-living form that becomes chronic. Please don’t give up hope; my friend has been sick for 9 or 10 years.

  3. Kathy says:

    Can you give me a little more information about your symtoms? I’m having a lot of problems including those you mentioned, but now I’m having excess headaches, severe back pain, and watery eyes for the last ten weeks.

    I’ve had pain for awhile now, but I’ve noticed it becoming more cumbersome in the last four years. I’ve been through many test with no real diagnois, can you recommend any one test?