The Good, The Bad, and The Ugly

I’ll start The Ugly

THE UGLY (what I don't like)

- Falling down (it hurts!)

- Ongoing grief (i.e.; I am constantly losing my abilities, so there's always something new to grieve the loss of)

- Struggling to turn over in bed (this is strangely hard and I can see the day when I won't be able to do this by myself)

- Choking on food or water which can cause me to have laryngospasm (When this happens to me, I know I’m fine but the people around me don’t. I just need to relax my vocal cords – which takes me perhaps 5-20 seconds before I’m back to normal - The only YouTube video I could find with an example is this one of an infant – listen to the first 20 seconds).

-  My left-hand “claw” (my hand has lost almost all ability to do any fine motor actions)

- Using forearm crutches to walk

- Walking really, really, really slowly

-  Using a walker in the mornings as I have so much trouble with balance in the early AM

-  Getting fitted for an electric wheelchair….and getting a loaner from the ALS Association Loaner Closet

- Dropping things

- Getting up out of a low chair (or even worse, a low toilet without handrails)

- Being so disabled that people hold doors open for me

-  Using a button hook to dress

- Having to wear an AFO on my left foot due to foot drop

- Listening to people telling me about their aches, pains, or minor health problems (do they really think that's the same thing I'm going through? I know they don't but it's weird when people do this)

THE BAD (what I miss)

- Running

- Walking

- Hiking

- Biking (on a normal 2 wheeled bike)
- My nightly beer (3 times I've fallen after having some beer - twice after one beer and another time after a half of a beer!  So I've sworn off beer until I'm in a wheelchair - NOT something I look forward to)

- Fixing things

- Working with tools in my shop

- Giving up my dream to fix up/rehab our 1966 27’ Airstream, and having to sell it instead

- Traveling in our Airstream trailer (we just finished a one month trip to northern California – which I fear will be our last)

- Talking normally

- Typing with six fingers (I'm down to four - three on my right hand and only the index finger of my left)

- Oh, and did I mention running?

THE GOOD (what I like – not many things but there are a few)

- Strangely Susannah, Lionel and I are closer than we have ever been and Susannah and I are in some ways, more in love then ever

- Family and friends

-  Riding my cool 3-wheeled recumbent HP Velotechnik Gekko fx bike with a Bionx electric torque-assist motor

- Having people hold open doors for me

-  Eating anything and everything I want (they want me to gain weight!)

- Great parking spaces

- Getting to ride those motorized disability carts at Safeway or Home Depot.  Unfortunately they have a sign on them that they can't be taken out of the store.  I figure I'll break that rule someday when I find another gimp who's game for a race in the parking lot

- Oh, and orgasms.  Because of the hyperreflexia that’s seen in ALS orgasms are kind of a full body experience.  Enough said.