Hello Again

[BlueEyesOhio7]

Hello all,
I haven't been around in a while. I hope you are all ok - well - as ok as you can be.

I was diagnosed 1 year ago June 17th. Seems like a long time ago although only a year.

This has been a LONG year for a lot of reasons. Mostly good. I have grown so much emotionally and spiritually. I am finding talking my eyes off myself VERY beneficial, LOL!

I believe this is a long, hard road - but, I notice God is there for me every day. It never fails and it's always different. If I am paying attention I see it. I will turn on the radio and hear JUST what I need. I'll open my devotional book (Streams in the Desert) or my Bible and I get JUST what I need. But, I want to take my eyes off myself to do it.

Blessings,

Lynne (in Ohio)

 

[MaxEidswick]

>I was diagnosed 1 year ago June 17th

happy anniversary!

remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!

 

[Green Queen]

Lynne when all this started for me, my counsellor at the time said that God gives every cloud a silver lining.
As a family we look for silver linings daily...and seem to find them.
God bless you on your journey.
Janelle x

 

[Nuts]

Hi Lynne. We, too, find it helpful to look at the positives as much as possible. Glad to hear from you!

 

[BlueEyesOhio7]

Well Max, I violated rule #6. I was trying to throw something away in the waste bin, had the door open, rammed my right food into the door jamb. Then I panicked and pushed the joystick on the pwc in the wrong direction further adding to my dilemma and pinning my foot to the door jamb.

Foot has healed. Hopefully I won't do THAT again OUCH!

Lynne

 

[Annie's Phil]

Well Max, I violated rule #6. I was trying to throw something away in the waste bin, had the door open, rammed my right food into the door jamb. Then I panicked and pushed the joystick on the pwc in the wrong direction further adding to my dilemma and pinning my foot to the door jamb.

Foot has healed. Hopefully I won't do THAT again OUCH!

Lynne

Lynne et al,

Another dangerous scenario to be aware of happened to Annie when adjusting the tilt and height of her chair at the bathroom vanity. The vanity was wheelchair accessible, and if the arm of the chair wasn't tilted up, the joystick would fit under the countertop. One day, with the joystick under the countertop, she started adjusting the seat position with the joystick. After some movement, the joystick came in contact with the underside of the countertop which caused the seat to continue to drive upward into the countertop, which deflected the joystick even more... Her legs took the brunt of the force, but fortunately didn't break anything, although she was hurt. She was able to get the chair turned off and called for help. I came running and was able to extract her from the trap.

So might I suggest adding to Max's rules:

Never allow the pwc to get into a position with the potential to trap the joystick or otherwise cause it to self-actuate.

 

[MaxEidswick]

>remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving, don't ram wheelchair into immovable objects, Never allow
the pwc to get into a position with the potential to trap the joystick or otherwise cause it
to self-actuate.

 

[Green Queen]

Max that's going to my wall.

I too have violated rule six.
Queen Victoria Building is really old (for here anyway 1898) and has old lifts that you can see out of. When we were there, we hired 'fake henry' so I could get around. Because my Henry is suited for my left hand and fake Henry isn't, I went the wrong way and got my arm stuck between lift doors. Very dazed and confused afterward. The bruise was bigger than Texas!
God bless, Janelle x

PS not sure why but there's this phrase, everything is bigger in Texas...hence the phrase I just used. I don't know...maybe our brains are upside down too...

 

[MaxEidswick]

>everything is bigger in Texas

true, even down there

 

[anderkling]

Lynne, good to hear from you, and to know the Lord gives you the right word at the right time. Yes, it's a hard road we're on, but we don't walk alone and afraid. His grace is sufficient. Phil, what happened to Annie happened to me recently. I was in the bathroom at the vanity, trying to get something from the bottom shelf. I accidentally bumped the joystick, and the wheel got caught under the vanity while the arm of the chair pinned my arm against the vanity counter. I screamed and my husband came to my rescue, lifting the wheelchair away. I was badly bruised and in shock. Since then, I've been conscious to always turn off the pwc when I'm not driving.
- Charlene