not totally glad to meet y'all

[affected]

Hi Pecas, we really do hate getting new members as we would like this place to become obsolete, but since you are here now, you will find that we all lean heavily on each other and the support is amazing.

These early days after diagnosis are really wild, you will be up and down and all over the place - totally normal! You will find some settling of this, and your family will be going through all that too. Be kind to each other and help each other get over this huge shock.

Keep using this place, you will find you give as much as you receive here, even when you aren't expecting it.

 

[MaxEidswick]

>I was diagnosed June of 2014. Just 6 weeks ago.

hard to believe, Lynne

 

[GregK]

Welcome to the most helpful club that you never wanted to be a member of. 8^|

 

[adozi]

Get an AFO (ankle foot orthotic) for the for the foot drop. Simple, plastic, inexpensive, order online, should be about $30. Sorry you find yourself here. It's not going to be easy, but you aren't alone, and there are great people here.

 

[Mediasmart]

Glad and sorry to meet you Pecos

Get what you need and make sure you are as comfortable and safe as you can be. Don't fall. Keep your weight.

Some of the folks here, (Adozi, Max, Tillie, Nikki, Atsugi .... so many more, are some of the finest and bravest people I've ever had the pleasure to talk with. Engage them. They know so much.

 

[pecas]

Adozi, my doc told me to wear cowboy boots as an AFO. While I have several pair (I am Texan, after all), I took the opportunity to purchase another pair that I was eyeing last season. Medical equipment and all. They work quite well! Let's call them Texas AFOs.

 

[GregK]

Whoa! My boots have about 1/2 inch of dust on 'em as I've not worn them since I got my AFOs...
Just how bad is your foot drop?

 

[pecas]

It's not as bad as I'm sure it will get. Is there a scale? She was very specific about pointed toe, raised heel, and high shaft, to stabilize the position.

 

[BlueEyesOhio7]

@Max >I was diagnosed June of 2014. Just 6 weeks ago.

hard to believe, Lynne

(Sigh) Yes, Max it's true. It seems like a lifetime ago ;-(

 

[MaxEidswick]

>(Sigh) Yes, Max it's true. It seems like a lifetime ago ;-(

yes, but hopefully years to come

 

[adozi]

I planned to wear purple ones to my wedding, but they got to be too heavy. :-/ Well, the important thing is that you know there is a solution!

 

[krnNdug]

pecas,

Sorry to meet you here. Your story is very similar to mine except we blamed everything on my back/nerve damage. Even your story with the neurologist was similar, she said it could have been a stroke, or a bunch of other things. She didn't even finish the EMG of all 4 limbs. She knew.

We went on a cross the country trip and we were fortunate enough to visit your fine city. We also were there the day they had the Spurs parade down the river which we saw from our room at the Drury. What an experience.

I have lurked mostly on this site.
Good luck.

Doug

 

[nebrhahe53]

So sad to see more good people felled by this monstrous disease. Only someone who has experienced it can begin to understand the emotional swings.
On a positive note I don't worry about flying anymore- figure I'd go a lot easier in a crash not that I'd want anyone else hurt.

 

[Mediasmart]

.... figure I'd go a lot easier in a crash not that I'd want anyone else hurt.

LOL there is a certain amount of gallows humor on here so please understand and don't take offense. No one who has ALS takes it lightly. However, developing and showing a bit of bleak humor actually helps those around you deal with what is happening; i.e. if you cry they cry, if you laugh they may not smile but they won't cry. Folks take their cue from you and how you handle it.

This is one club that in spite of everything, membership does have certain privileges.

 

[MaxEidswick]

>This is one club that in spite of everything, membership does have certain privileges.

Harold, couldn't have said it better