Augie Nieto's New Blog

[Mtzu]

Augie Nieto of Augie's Quest has had ALS for ten years and does a lot to raise awareness and funds for research. It was through his efforts that I originally heard about ALSTDI.

He's started a new blog called Sh%* No One Has Said About ALS. In his first post, he writes "ALS sucks, so let’s talk about it." He's a very upbeat guy which, at least for me, is a good role model.

Today's blog title took me back a bit, "Top 10 Reasons Why It’s Good To Have ALS". It was worth the read.

Link: https://augienieto.wordpress.com/

 

[MaxEidswick]

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t o wall

 

[tripete]

I would add the Handicap Placard, yesterday we went to the beach it was crazy and no parking except for a handicap spot right next to the sand!

 

[Green Queen]

Absolutely Pete. We look everywhere for silver linings...my ACROD sticker is going nowhere! It is the best thing at shopping centres, hospitals, the cinema, etc.
dunno about everywhere else, but here, I wish the disabled bays were monitored a bit better. By the parking inspectors. The amount of times we park next to a car in a disabled bay with no ACROD sticker...VERY annoying!
One thing we have discovered, if we pay at a parking lot that isn't free, we actually get double the amount of time we pay for. We love that, too.
God bless, Janelle x

 

[Mtzu]

Pete, that's a good one. I just started the process to get a placard. And for the beach? Heck yeah! Great idea.
-Michael

 

[Nikki J]

I got curious and searched a few different states and their requirements. All the ones I looked at seemed to have some qualifying wording like neurological condition. Impaired ambulation etc that can certainly apply to ALS. Not so my state! Since I am lucky enough not to have arthritis, heart disease or lung disease but merely have ALS the only way I can qualify is when I can no longer walk 200 ft. It is my misfortune if the non handicapped parking available makes the walk much longer! Officially jealous and whining!

 

[MaxEidswick]

>Officially jealous and whining!

petition! you have my support

 

[Nikki J]

Thanks Max!

 

[CGARS]

here's a fun fact :
in Canada not only do you get all the good spots at the beach with a accessible pass,
it also substitutes as a fishing license!
how bout that, eh?

 

[Mtzu]

CGARS, How about that? That's great!

Nikki, that is justifiable whining in my book. Why do they make it so hard? I'm with Max. Support!

 

[tripete]

I asked my ALS doctor about getting the placard. He had the form right there at his office. He signed it and gave it to me. From there I just dropped it off at a Department of Motor Vehicles office.

 

[4tloml]

Nikki, could the doctor sign it for "lung disease" if pulmo tests showed compromised function? There HAS to be a way! My husband's form is in the file now to be signed Thurs. by PCP, because it seems a waste to spend limited walking on just getting to and from instead of the fun part. You are so articulate, Nikki--whining seems appropriate, maybe into the ear of someone who can make a change to that policy? More awareness of ALS now--wonder if they've even thought about it.

 

[affected]

In my state you can not only park in any disabled parking spot but:
* you don't have to pay any parking fees on meters
* you can park double the amount of time on any signed parking up to 2 hours
* if over 2 hours you can just park there all day

We found that sometimes the disabled spots were not even the best place to park! So often I would pull up in a driveway at the door of where we had to go, get Chris out, sit him in his wheelchair and then go park for free in a good spot.

 

[Nikki J]

Reduced lung fuction yes if the numbers are in the 80 s. I am truly fortunate that is not the case. I am pretty sure the way things are going I will qualify on the distance first. You are right this is probably an advocacy issue. Simply adding neurological issues that impact walking would do it

 

[tripete]

Lung function was my main reason for getting it. I can walk well enough (with a little assistance) but am out of breath so quickly that the walk from the lot to where ever I am going would make the reset of the "visit" miserable.

Generally I am not a fan of the govt. getting in our business but with a disease defining a death sentence I think there are more things that could be done.