When is a fall not a fall?

[Clearwater AL]

The most common notation of PLS found in practically every medical publication is... "PLS is a slowly progressive motor neuron disease." One of the reasons the criteria for it's diagnosis is 3 to 5+ years of exclusion and observation before a diagnosis is confirmed. A confirmed diagnosis does not accelerate the progression. To go from weakness in one leg (or both) to a PWC within a matter of months is as rare as PLS itself. It just might be something else.

Ok, wrote all that to say this... don't let our brains accelerate the progression. The fortunate scenario of "slowly progressive" is that it gives us time to "improvise, adapt and accept." We have to change the way we walk (slow down, smaller steps), pick something up, bend over, lean, stoop forward, climb stairs, get in and out of chairs, reach for something. Focus stops falls. Focus but don't give in. After my 3rd injury fall I did give into just one thing (for now)... the cane full time. And... I have become more aware (focus, concentration) of what I am doing now when I am on my feet. It may hurt if I don't.

But, do NOT focus on this... your progression. It may become perceived progression.

 

[Green Queen]

G'day Al, you are so right. Being anxious about...well, everything...is not a good idea. I must admit that since I have joined this forum I have been able to relax about everything.
Progression is definitely not something to aspire to!
Thank you for your wise words.
God bless, Janelle x

 

[MaxEidswick]

>We have to change the way we walk (slow down, smaller steps), pick something up, bend over, lean, stoop forward, climb stairs, get in and out of chairs, reach for something.

yup but you fall it is the fastest way to progress ...


also remember the rules:
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects
#7 don't do stupid things

ALS is about living, not dying!
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ok well, we take what we get and be glad for what we have
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If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

 

[avnl]

M has poor balance and has occasionally fallen even with the rollator, I think it is time to order the PWC. He is of a different opinion. We have had the injury fall, he broke his hip in March 2013. Then there are the loss of dignity falls with head scrapes. I tell him if he falls and injures himself again, I will kill him.......No my heart will pause and I will take a deep breath and carry us both ahead.
Concentration is indeed the key to falling less. It was odd. In rehab, the PT person was on Michael's side that to use a wheelchair is giving into the disease and would cause quicker loss of muscle. We have a Zinger which has been great but it is not comfortable for long term sitting. M has horrible hamstring spasms particularly the side that the hip was broken on. I have been saving medical insurance for covering a PWC. Alas, M is not a veteran. I also think it is time to get a lift/hoist....So we are in the land of the unbalanced keeping upright.

 

[Green Queen]

Gee Anna, after reading what I have here, I wonder what that PT knows really of this disease?
I use my stick or Henry or wheelchair when I'm too tired for even controlling the scooter. I do understand where Michael is coming from, I think stubbornness is something that grows (for me at least) but at the risk of sounding rude, just don't let his stubbornness become pig headed ness or stupidity!
Good luck with the options presented to you for a chair and hoist.
God bless, Janelle x

 

[Green Queen]

Also, I can't believe I'm telling you all this...
Yesterday I decided I didn't have time to put my AFO on. Didn't fall, but rolled onto my ankle. HURT!
Am I EVER going to learn!? I'm serious! What will it take to teach me!

J x

 

[cheerleader]

Avnl, your comments point out (once again!) that many PT and other medical people don't understand this disease.
Hope you can convince him not to listen to the clueless people on this journey! Good luck.

 

[AKmom]

I should point out that I walked around for 17 plus years without a pwc. I walked around 15 years without afo's, although I could have used some earlier than I got them. It took about that long to get the correct diagnosis. I moved from one state to another and my diagnosis came very late in the game compared to many here who seem to get it in the 3 to 5 year range. Not knowing what I had and getting so many wrong diagnosis's had made it so I would try harder to condition myself. Not knowing why I seemed to always be prone to tendon sprains and tears.

I was falling frequently, yet I would pick myself back up and continue to move. I broke many bones, but kept on walking and doing what I could do to keep moving. My pain levels grew and I learned to tolerate more pain without drugging myself to oblivion. Relief came with a diagnosis as I then knew what to expect and adaptation of my activities.

I slowly started to step down from things I once had done, but no longer could do because of either physical disability or energy level. Coaching, scout leader, set design for play productions, teaching art and photography (event and people photography, I still do other types that do not require me to stand) the list goes on. However, everything that I gave up, I found something else to take its place that I can still do. I became a travel a gent who specializes in accessible travel. I still do scenic photography but have broadened my specialty of digital art and have been learning film editing. I also am thinking about trying to start making jewelery. Something I had learned in high school in a sculpting class and enjoyed.

My point in saying this is, life continues and progression is slow, keep learning to adapt and stay busy. Never let a day go by that you do not use what you have left, to the best of your ability. It helps me to feel not only productive, but I am doing things I enjoy.

If you can avoid falling by adapting and using devices that are made to keep you upright, then do so! Believe me when I say, you do not want to have to deal with the pain that comes from years of abuse of tendons. Making them take the brunt of the work that my muscles failed to do. Live life to the fullest!

 

[amysgarden]

My husband had his first "fall, but not a fall" when he rolled out of bed from sleep. That is a new one but denies it was a fall, no injuries thankfully. I think his core muscle strength is so low that he was unable to control himself while turning in bed.

 

[Green Queen]

Amy, I haven't fallen from bed 'yet'. We bought a king size bed however Wayne doesn't really get more room as I'm quite scared about rolling over and falling out (not that there's 10 in the bed...)!
Not having control to roll properly is becoming an issue. I may have to invest in a bed rail.
I'm glad your beloved didn't injure himself, going from sleep to injury wouldn't be fun.
God bless, Janelle x

 

[Tractor Boy]

Welp! I did it this morning; I "fell" in the bathroom! Just yesterday I was a self-proclaimed "Mr. Focus, Mr. 100% Concentration, Mr. Awareness of Every Step" and advised others to do the same. Well, unfortunately I "took my eye off the ball" (for one second), slipped a Iittle transferring from commode back to PWC, and down I go! For some reason, after I performed a "half gainer with a full twist" on the way down, my butt miraculously located itself on my PWC arm rest. I immediately felt like "Mr. Stupid." I'm OK, just embarrassed. Rule #1=Don't Fall!

 

[MaxEidswick]

>Rule #1=Don't Fall!



Ditto that!

 

[bigmark1954]

One thing I have learned about falling is....THE BIGGER THEY ARE, THE HARDER THEY FALL!
I was goofing around with a buddy (sparring and wrestling) a few months back, lost my balance and fell hard on asphalt. He continues to remind me, that I actually bounced.
Occasionally I forget that I am a gimp, and pay for it dearly. When I do fall it seems like I go in slow motion, I usually have time to say "ohhhh sh!t" before I hit the ground.

 

[Tractor Boy]

Big Mark, I think we've discussed this before....you say you fall in "slow motion." When I fall, I don't have time to say "oh sh!t." You're a big guy, so you must catch more wind resistance on the way down! Lol

 

[bigmark1954]

Big Mark, I think we've discussed this before....you say you fall in "slow motion." When I fall, I don't have time to say "oh sh!t." You're a big guy, so you must catch more wind resistance on the way down! Lol

IT IS RELATIVE TO THE EARTH'S GRAVITATIONAL PULL! Yes...we may have discussed this before, but I can't even remember what I had for lunch yesterday. Forgive me TB, I hope the stories were the same, so no body thinks I am fibbing....you know how stuff gets embellished down the line(Brian Williams come to mind)
I am glad you are paying attention to my fodder!:shock: