Lost ‘Spasticity? Or Tone?’ Overnight

[Nanders]

Hello all,
I’ve been in rehab for the second tIme, for another fall. Nothing broken.. but I’m not able to go home anymore. Could be worse!
I’ve lost a lot oF both upper arm & hand function in last month.
I woke this morning & went to PT..went to stand in the bars & my normally tight calves/ankles & feet were ‘loose’ & I was totally flat footed ( first time in months ) & I could not stand. Also biting right cheek & lip.
PT noticed several facial muscles not working now. She said I’ve had a loss of tone.
I’ve just been diagnosed since Nov..& I have rapidly progressing case... but so much overnight ?
Thank you for insight & honesty!
Nancy

 

[affected]

So sorry Nanders.
Falls very often hasten progression I'm sorry to say. This happened with my husband - after every fall he would find progression and of course would never heal fully.
Rapid progression can feel like you literally see losses every single week and it's hard to adjust because things change again.
I hope the PT understands ALS and does not push you on anything as that could hasten progression even more.
Hugs, it sucks

 

[lgelb]

I'm very sorry, Nancy. It does sound like rapid progression, but if you were bruised in the fall, there could be some swelling that is temporary, even if you can't see it. Moving around to the extent you can and some range of motion exercises may or may not restore some function, but is always good for circulation. You might also ask the PT if she thinks massage might help.

Re the facial muscles, they can "fail" virtually overnight but not necessarily as a group, and usually not along with leg muscles at exactly the same time, so especially but not only if you hit your head in this or the last fall, I would ask if a small bleed or stroke can be ruled out.

--Laurie

 

[Nikki J]

I am sorry. They have not adjusted any meds in the last few days have they?

 

[KarenNWendyn]

I’m sorry. Glad nothing is broken, but I realize that probably seems like a small consolation.

 

[Nanders]

iThank you all for your insight & support.. it means so much to me!! My kids are just getting used to the whole diagnosis. The rapid decline is overwhelming them.
I’ve had CT & been cleared of any head injury.
I’ve still got some extra padding in mid section, so just soft tissue bruising.. lol
No change in meds,
At least I’m in a very nice facility where PT & OT listen..staff is good., & the 2 drs are knowledgeable in ALS.
I’m safe, comfortable & cared for. Can’t ask for more that!
Nancy

 

[KimT]

Nancy,
I'm so glad you're in a good place and the doctors and staff get it. That will go a long way in your care.

 

[blitzc]

Nancy,
God has blessed you with such a postive attitude! Do you live alone? Is that why you can no longer return home? I certainly pray that this place continues to offer you great care.

 

[Nanders]

Hello,
Yes I did live alone & my 3 kids came in alternately to help with bathing, laundry, cleaning etc. It got to be that I needed 24hr care. They have jobs/families lives of there own to live. I was approved for long term care thru Medicaid so here I am, close to all of them. They visit 2/3 times a week... just to hang out or my dtr does my nails
It’s good for everyone!

 

[affected]

So glad you have a good facility there - you can relax on many fronts now, and your kids can enjoy visiting you and doing nice things with you.