Take the possibility of falls seriously

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Clearwater AL

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Get Real
Early (new) PALS or slow progression… don’t fall. Take all considerations
to prevent them.

Over three weeks ago I took a bad fall smack on my tail bone (coccyx and
sacrum). I’ve had the epidural shots. Little relief. One of the most miserable
hurts I’ve endured. Years ago I broke two ribs close to the spine… after a
week I was at least able to get comfortable with the right chair with pillows.
With this, there isn’t a comfortable chair in the house. The only relief is to
lay on my side in bed.

But, (Big But) I’ve lost a lot of the mobility I had previously. Getting on and
off the commode is more of a struggle, climbing stairs, walking with the
rollator and getting out of chairs… I can’t sit in very long.

This is my opinion…I’ve read where some posters have written they were
able to regain some mobility from some PT, meds, exercise and etc.

From all I have read here and related web sites, this is (again) my opinion
with ALS, “Once you lose it… it’s lost.” Maybe some of our very ALS knowledgeable
members can expand on regaining something lost is possible… I worry this
has accelerated my progression.

Take the possibility of falls seriously if you are an early PALS (as I call it)
or your progression is fortunately slow and you still have considerable
mobility.
 

affected

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So sorry to hear this Al 😔
I once had a fall and I don't know if I broke my tailbone or not, but it took over 6 weeks to heal and was terribly painful.
But the losing mobility as a result of course was not part of it for me, so I'm really saddened.
Falls for PALS, ones that are not even that serious can be so life changing.

Sorry I can't help with regaining something lost, that seems to me, to happen randomly to some PALS, rather than there being a way to do it.
 

EricInLA

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Sorry for your fall, Al! Such a coincidence you post this today. I was roller blading along the beach yesterday and fell because the wind had caused sand to fill up a section of the concrete bike path and I got stuck in the sand and went down. I scraped up my knee (the least of my concerns) and I think I did some damage to my already-depleted arm, which braced my fall, because it's painful and not working quite right today. I know I shouldn't be doing this activity but it's one of the physical activities I can still do because it doesn't require much from my weak arm and hand. So I'm reluctant to give it up. But maybe I will.
 

KevinM

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So sorry for the falls Al and Eric.

Al, let me echo what Tillie said about the pain and lengthy healing time for a tailbone bruise or micro fracture. I slipped on our wet walkway years ago (before ALS) and the pain was intense for at least a month or more. I’m hopeful that once it heals you will regain some function. Right now I imagine the pain is limiting your ability to move much at all.

Eric, it sounds like your fall was freakish and not related to balance or weak legs. I’m optimistic that your arm will recover from the trauma of catching yourself. I’d hate for you to stop rollerblading since it sounds like it’s a great source of enjoyment. Perhaps a good wrist and elbow brace for your weakened arm, so if it happens again there will be some support. Either that or try to catch yourself with your good arm, silly....(easier said than done, especially since your dominant arm is affected and it is hard to retrain your natural instinct). Hoping for recovery for you both, Kevin
 

Nikki J

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I am sorry you are in so much pain Al and I hope you feel better soon

you are right of course falls are bad and can accelerate progression they can even kill. we have lost members from falls.

the not regaining lost function is absolutely true when it happens from dying motor neurons. It is not always true when the lost function is from an acute event like yours. If the issue is not from motor neurons people can heal and pt may help. But if you lose muscle because of decreased mobility that is not going to come back either

my sister had major surgery when her disease was quite advanced. Pt did help with her recovery though she did not return to pre surgery baseline
 

affected

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I will note too Al, that while my tailbone was really painful, my mobility and even my posture was really impacted. So I can still hope that, as Nikki notes, you can gain some functionality back when the pain is over.
 

frankb

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sorry about your fall Al. i have noticed a weakness in my body with each fall. my last serious fall resulted in no longer being able to use my rolator and thus i a am either in my power chair or in bed. i can no longer sit in a normal chair because because i can't can no longer stand up from the chair. lift chair is a no go. falls are a real bummer.
 

old dog

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I'm one of the people who has been able to regain a little strength and slightly improved mobility after a severe illness. My formal diagnosis is ALS, but I'm referred to as a typical PLSer. I don't have the significant muscle wasting most ALS patients experience. Don't hesitate to try a round of PT once the pain subsides which I hope is soon.
 
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