His first ALS-fall

[NeedCourage]

:shock:

(Please forgive the length of this...)

Hi friends.
Need to blow some steam… and know that I can do that with you — and you will still like me! : )

Today, Toby took his first BAD so-called "ALS fall". His ankle just roller over and he crashed into the dresser and fell hard onto the tile floor - hitting his head pretty hard.
OH MY GOD>
I’ll just make a little list:

I checked to make sure he was alive.
I quickly assessed that no bones were sticking out and no blood was spurting.
Seriously. I settled him down and got him to lay still so I could see what was what.
Appeared to be no injuries BUT
I could not get him off the floor.
Previously I had gathered a couple of neighbor’s phone numbers for such a time when you don’t want to call an ambulance or police.
Sooooo
I ran, hobbled really, outside and across the street hollering “LINDA LINDA .. HELP” …
Her name is … Leslie.
no joke.
No one home.
I then called phone of second neighbor - busy line - and then one minute later no answer. (She doesn’t like me so I’m suspicious - if you know what i mean.)
Running back to my house after trying across the street again…. saw a youngish woman, fortunately not too small - who said,
“Do you need help?”
I BURST into sobs and said yes, I need to get my husband off the floor…
She came in and we were able to right him. Ironically, I’m more bruised than he.
The man next door whose phone was not answered was oddly enough peeking across the fence into the house saying, “Is Toby ok ?”
Hmmmmmm…

I’m so A N G R Y I could throw an elephant. No, wouldn’t want to hurt anyone or thing … maybe beat the heck out of some pillows….

Anyway, now for the punch line:

We were just getting ready to walk out the door for an appointment to get him measured for foot/ankle braces! Talk about timing.
We were able to get there for our appointment and
The plaster? casts were made. We will go back in a week or so. Also have the name of a good physical therapist who works with ALS folks
along with any other neuro problems.

I’m babbling - I KNOW but it feels so good.
This was my worst day yet.
My nerves are shot and I find myself getting tense and short with T occasionally. I feel horrible but we were not the perfect couple before this
and now it’s so damn hard - communicating mostly.

I don’t mean I holler or ***** or anything- it’s just that I become sooo tense/tired and I’m over-watching him - and he ‘appreciates' it - but then he’s tense, too.
Natural on both ends.
I just hate this more than I can express.
I’m struggling.
My body is giving me heck - which is not helping. I’m the one in pain most of the time - ironically. T, thank goodness, has none.

Well, I guess that’s enough for now.
Tob is across the room in bed watching a baseball game, and I’m sitting here with Doriann Grey (kitty) at my side. It’s quiet.

Thanks for listening - and mostly for caring.
Love - and later,
Nancy
PS I’m not even going to read this over because I’ll not post it. I know me. lol.

Ciao for now!
xo
Hanging in there by fingernails...
Nancy

Thank you to anyone who got to the end of THIS novella.

 

[cheerleader]

Oh, Nancy, rant and rave all you want. Life as a CALS is not easy, as all the responsibilities fall on you that were once shared. Living on a precipice is hard. Hugs to you, my dear, as you continue to do the best you can. I'm so sorry for your tough day.

 

[Barbie]

feels good to get it off your chest, right? you did good, you both survived. all you can do is laugh about how absurd it all really is. hang in there!

 

[NeedCourage]

thank you ladies... your words are much appreciated.
time to go turn in with my fella...
love you!

 

[Green Queen]

Nancy...wow!
Thanks for getting it all off your chest...it really sounds like you needed to!
I hope Toby is ok emotionally after the fall. More than hurting me, my major fall left me scared. Scared of what damage I could have done, and scared of it happening again!
When you get Toby's AFO, make him do himself a favour and actually wear it! With hindsight all of my near misses and THE fall have been barefoot...
Take care of you.
God bless, Janelle x

 

[Gracious99]

Raymond took his first fall tonight too, scared the crap out of me and him. He got tangled in a blanket and fell and hit his head, poor baby, fortunately he was able to holler pretty loud still and my boys were home, so they helped me get him off the floor. It would be pretty tough to do on my own, so I need to plan for that possibility. Hope the adrenaline has worn off for you Nancy, hang in there! ��
Grace

 

[amysgarden]

Contact emergency services (fire department) in the morning and get their 24 non emergency line. It is for situations like this, they can help with a "lift assist" and you are not taking them away from some life saving call. It reaches 911 dispatch but automatically registers as non emergent. They come as soon as possible (no lights or sirens) and help lift back to bed or wheelchair. I just got our programmed into my phone after a fall.

 

[Gracious99]

Thank you!

 

[Green Queen]

Falls are just as emotional for the carer. I hope you have recovered from the fright of it all, gracious.
I'm so glad that we have this forum to share stories as you and Nancy have.
It certainly makes me feel better to know that I'm not alone on this journey.
God bless, Janelle x

 

[affected]

Nancy, my sister in pain.

Oh sh!t (I spelled it right this time Mark!)

Seriously, organise that call to non emergency fire dept and don't attempt to get him off the floor again.

I'm so glad there was no blood nor bones sticking out.

I felt the whole thing as I read your post. Having had so many falls with Chris, 2 of them being serious injury falls I feel your pain. I had all the shock reactions and I would relieve it for days after. I still will never forget feeling like I was looking at murder scene from some movie on that last bad fall Chris had. Having our PALS in an ER is seriously not fun and downright scary as they just don't understand ALS there, they are emergency teams after all. You want to avoid doing that trip with him!

It's not truly their fault, and it's sure as heck not yours. I hope this fall at least has a positive in getting him to take safety more seriously and for you to get more equipment from whatever supports you have. I'm sorry I forget if you have a hoist yet? If not, one needs to be organised for you and soon.

Take lots of deep breaths and rant here as you need.

 

[Gembead]

So sorry to hear about Toby's fall, but pleased that no real damage was done, but it is a great reminder to our CALS how careful they need to be. Hugs to you both.
Love Gem

 

[Nuts]

I'm glad you can come here to rant. Now, let's talk about you, sweetie. If you hurt more than him, please please please divert some of that over-watching attention to yourself while you can and try to deal with you.

I hope Toby's AFOs help. My husband found himself less stable in them, so we get more use now that he's not walking (to help keep his ankles stretched out).

The falls are so emotional, especially early on. We've had so many that I don't get as worked up anymore (please God, don't give us a bad one just to get my attention). Yesterday I rushed into the men's room for the first time when my guy went down while tranferring in a public restroom. I announced myself on the way in, but all I could do was sit with him waiting for help. Fortunately we were in a hotel and someone called for security to pick him back up. Every stage has new challenges, and all too often it takes falls to convince our PALS to make adjustments. i could see in his face that he knows family restrooms are in our future, and it's painful.

Acceptance is the only thing that gives me peace, and it's something that I have to work to hold on to. A sense of humor is also essential for holding back the tears. We both agreed that he was fortunate to take that fall in a place with a clean floor...

 

[MaxEidswick]

>Oh, Nancy, rant and rave all you want. Life as a CALS is not easy

Ditto that!

 

[NeedCourage]

The camaraderie here is second to none.
I am a loner - and as such have a small world - which doesn't help in ALS!
Thank goodness my T and I are still madly in love! Yes we are.
We have had a great romance for 45 years (with a few logistical interruptions) ... and it continues....

Thank you again friends. You make my world so much less lonely,
and help so much to endure.

Love 'n hugs to all who responded, read or are part of this forum.
My heart genuinely goes out to each of you.

Nancy

 

[gooseberry]

Hi Nancy, I have been wondering how you guys are doing! Glad you got that off your chest....hopefully you visit us if possible a little more so we can listen and give some support. I wish you had someone to help you...hugs, Steph