My Family's Journey Through ALS - Facing Reality

My Family's Journey Through ALS - Facing Reality

The doctor scheduled us to come back in a few weeks to do another EMG and a second, more in-depth MRI.  I’ll go into this later but let me tell you that driving to NY with my father is not exactly relaxing so the thought of going back was not enticing to me or him!  Never the less we made the appointments and him and I drove back to NY with him checking his watch every 5 minutes and complaining about the traffic, yelling at people that cut us off, definitely not the person you want in the passenger seat when your negotiating your way around NYC.  We were there a good part of the day and had to go to 2 different locations for the tests, we headed home afterwards knowing nothing more then when we came.  We had to go back a 3rd time for the results.  This time I think both my brother and sister came with us, maybe more I’ll have to get back to that.  We sat in the doctor’s office and he showed us pictures from a medical journal about what the frontal lobes of the brain were supposed to look like, my dad’s were bigger then normal apparently, so the diagnosis was one of 2 things.  He said you either have frontal lobe dementia but the fact that you show no signs of dementia would make that less likely.  The other is a motor neuron disease but he never said ALS, which wouldn’t have mattered because at the time we had no idea what it was.   He wanted my dad to come back for a PET scan to determine which one it was. My father looked at him and said, “Can you do anything for either one of them?”  The doctor said, unfortunately, no so my dad said, then thank you but I’m not coming back for any more tests and we left.  We still didn’t have any indication of what was wrong with him, what to expect or what to do for him.

Driving home I thought, now what, we still didn’t know why his speech was getting worse, why his left leg seemed to be 10 times heavier for him then his right and why he continued to choke on liquids which are seemingly very easy to swallow.   We still never thought of ALS, mostly because we didn’t have any idea it could be that or what it even was, no one had mentioned it up to this point.

Like all people trying to research a disease we Googled  Motor Neuron Disease and ALS came up but I think we still thought, this can’t be it, this is fatal, there’s nothing they can do and it looks like a horrible way to die but the symptoms were right there on the page, all the things he’d been experiencing.

He insisted he wasn’t going back to NY for further testing and I think we just thought he would miraculously get better, we just didn’t know where to go or what to do at the time. .  We weren’t sure what was wrong, or didn’t want to admit that it was ALS, a fatal disease that didn’t look like something anyone would ever want to deal with.  My sister Darlene and I talked about it quite a bit and discussed that we did believe that’s what he had and talked about how to prepare for what it said to expect although everything we read also said everyone was different.  It also said the life expectancy for most ALS patients was 3-5 years.  I believed we had more time, so we just went about our lives for a month or so but the reality set in, he was getting worse, tripping more, getting hard to understand, and choking all the time.  

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