Summer 2024 

What is it like to me?  

Robin

6/24/24

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I have ALS .  I also have cerebral palsy, and essential tremor, and scoliosis .  All three were present befor the ALS and took off like a rocket since the diagnosis.  Or even before the diagnosis, one of the immediate problems in June of 2023 was remarkable weakness in my right leg.  .  Several months later when an EMG was done, there was no finding for that leg.  Could have fooled me.  the drool and the speech problems were also early harbingers.  I have had to let go of the medical professionals who assured me that it was aging and cp.

I blame the weak bladder muscles on the scoliosis. Again it was present a long time before the diagnosis. 

The reason I cannot see very well is that the ALS have made my neck muscles very weak.  This was a surprise.  I expected to have problems with my hands, I didn’t know the problem was going to be my neck. 

The two aspects of ALS that have really blown my mind is being non verbal and the fact that this beastie has destroyed my relationship with food.  I can no longer swallow.  This is truly ironic for someone who spent several decades as an active member of Overeaters Anonymous .  I am being kept alive by formula that is poured into my feeding tube 4 times a day.  This is the aspect of “bulbar onset” that probably killed my grandfather relatively quickly, given that he was diagnosed in the early 60s.   I give thanks for tube feeding every day because I am very aware that without it, I wouldn’t have lasted this long.

So I taken both of these aspects of ALS and made them a conscious part of my spirituality , My church had Jazz Vespers last week and it shook me to my core.  I felt for a minute that I was touching heaven.  Likewise I can imagine that there will be a great feast when Jesus comes for me. 

The excess saliva  aka the Drool.  Again this was an early sign. Right now it mean that I spend my day with a towel wrapped around my neck   I try not let it destroy my self worth. 

The other one I try not to take to seriously is the overactive bladder sometimes incontinent. there was the famous occasion when our train home was massively delayed Iit was also an old fashioned train without a restroom.  I did fine until we arrived home. I stood up to climb the stairs and promptly rather publically wet my pants.  Just part of my reality. `The days I stay dry it’s really listening to the urge.  Breakfast includes meds  and it all adds up to a lot of water.  Your motning includes multiple trips to the bathroom.  Again, acceptance.

It’s called a power chair.  I made the decion after a series of falls.  Also because one became available. 

https://ppcmem.org/

Leaning to drive has been a real challenge.  Everything from making sure my foot doesn’t get caught when I am going round corners to learning to back carefully out of a narrow bathroom.

I am getting better.  However it is a real challenge. 

As I originally thought about this project on Sunday morning, another word that I heard was sedated.  My morning meds include several that sedative qualities. I have my moments when I can own sedation.

Why am I here?

Father Michael said that people were amazed that I was in church. Where else would I be on Sunday morning?  In the early 80s when Jesus first entered my life I decided that I could give him Sunday morning.  I have received incalculable riches by just showing up! As young adults my boyfriend and I courted by showing up for the same services. In this season I am at risk for depression.  Getting dressed and going to church is important self care.  Plus T brings me.  I cannot underline that enough. We have built a family rhythm that says, this is what we do on Sunday morning. If I started to refuse to go to church he would be within his rights to report me to my doctors for depression.

The day may come soon that I show up on a "vent." If I cannot show up for church with a breathing mask on, where can I show up?

There is another very real aspect to it. I am now spending my days in a power chair Until we build a ramp, Church on Sunday is my opportunity to get out!