finger movement

[Hjlee]

Hi all,
It's been long time that i havent ask questions on forum.
your response really helped me regarding how to treat and take care of my mom. I really appreciate your help.
Now i have another question to ask in case you might experienced same thing
My mother diagnosed on August 2017. Now she is on trach/ gallbladder tube/ G-tube. She cannot move her body including neck, arms, toes, foot.
she can still capable of drink some water through her mouth, open her mouth, moving her lips, using eyetrack for typing.
those past few months, she can only move a little bit her thumb on both side.
Few days ago, my mom seems to be very happy and i asked her why. And then suddenly she showed me her finger movement. she was able to move her index finger and pinky finger on both hands which didnt have any movment. it was not like full motion of movement but I was able to see it was moving. Have you guys experience this? do you think it is temporary? we havnet seen neurology this year but only her PCP. should we have some other test?
Thank you in advance.

 

[Nikki J]

My sister regained a small amount of movement in 2 fingers about 8 months before her death. We hoped it was related to an off label medication she had started several months earlier The doctor increased the dose but she did not improve any more or regain any functional movement. There was absolutely no doubt about her diagnosis. 3 neuromuscular opinions and a positive FALS mutation. Sorry not to be more encouraging. Your situation may be different

 

[KarenNWendyn]

I suspect it is just temporary. Transient improvements occasionally occur in ALS, probably due to reinnervation. But generally, denervation outpaces reinnervation, meaning that progressive loss of function is the overall trend. Sorry.

 

[Dee Dee 0617]

It doesn't matter if it is temporary or not. It matters that she has control over some part of her body for however long it lasts. I can still wiggle a little on some days, and I smile. Celebrate everything, anything! When we are all fighting so hard to find a foothold the wins are few and far between all the losses. Yeah your Mom!! Whoo hoo! Lift her arm up to scratch her next itch. BTW itches are the most frustrating thing to try to convey the location of without a voice.

 

[Hjlee]

My sister regained a small amount of movement in 2 fingers about 8 months before her death. We hoped it was related to an off label medication she had started several months earlier The doctor increased the dose but she did not improve any more or regain any functional movement. There was absolutely no doubt about her diagnosis. 3 neuromuscular opinions and a positive FALS mutation. Sorry not to be more encouraging. Your situation may be different

Thank you Nikki for sharing your experience! I don't doubt about her diagnosis but was wondering if it was one of the common symptom for ALS patient. Next year will be 3rd year of her diagnosis and I am very concerning about her new symptoms.

 

[Hjlee]

I suspect it is just temporary. Transient improvements occasionally occur in ALS, probably due to reinnervation. But generally, denervation outpaces reinnervation, meaning that progressive loss of function is the overall trend. Sorry.

Hi Karen, thank you for your opinion. Just wondered if this was overall symptom for ALS patient or not

 

[Hjlee]

It doesn't matter if it is temporary or not. It matters that she has control over some part of her body for however long it lasts. I can still wiggle a little on some days, and I smile. Celebrate everything, anything! When we are all fighting so hard to find a foothold the wins are few and far between all the losses. Yeah your Mom!! Whoo hoo! Lift her arm up to scratch her next itch. BTW itches are the most frustrating thing to try to convey the location of without a voice.

DeeDee you are right! our family is feeling thankful for everything

 

[KimT]

Any time your mom smiles, it's a win.

 

[jethro]

@Hjlee dont take me wrong, but many pals have same experience. remember nelda buss? her case was similar. she had a good support. if she fell, she will get hurt seriously and her recovery would have been impossible. her recovery started almost the same way. i am strongly convinced that, although als is considered as lethal, many of pals somehow reach the point of return/recovery, but they die of injuries, respiratory problems and havoc als related, and they are too weak. they simply dont survive long recovery.

keep her muscles alive as long as you can and know how. use ems ie.. neuroplasticity and neurogenesis are terms that no neurologyst wants to discuss about.
cure is within pals.
good luck

 

[Clearwater AL]

If I could add this concerning hand movement... with some PALS eventually the
fingers have a tendency to curl upwards (backwards to the back of the hand)
others the fingers will curl towards the palm. Not sure I worded this right.

Don't now if this is the right place for this comment but eventually it may/will
happen. karen? Nikki?

 

[KarenNWendyn]

Seeing OT to assess for hand splits may help with finger curling.

 

[KimT]

Two years ago my toes decided to curl and I got blisters on all my toes. I still had very good grip strength and decided to do my own PT on my toes. I didn't have drop foot, only weak ankles. I tried all these contraptions from Amazon but nothing helped.

I did the only thing I knew. I rubbed magnesium oil and THC on my feet each night and massaged them. I focused on bending each toe upward. I also found better sneakers with a wider toe box. I kept it up to the point that my back hurt from bending. I'm not sure what happened or why but the curling stopped progressing. They are the same that they were two years ago. I bent them hard, sometimes several times a day. As much as it hurt my feet, I walked barefoot or in soft slippers. Sometimes things happen and there is no explanation. Every PALS is different.

There is so much we don't know about this condition. I don't even classify it as a disease because everyone has a different experience.

 

[jethro]

ill share my story if it deserves completely to be told.

 

[KarenNWendyn]

There is a lot we don’t understand about ALS, and everyone who has it is so different. It likely is a collection of different diseases which all have the common connection of progressive motor neuron degeneration leading to upper and lower motor neuron signs.

We’ve veered a bit off the main topic which has to do with improvement of finger function.
If anyone wants to discuss a different topic or share a different story, feel free to start your own thread so as not to hijack. Thanks.

 

[jethro]

i wanted to continue with my story about my toes (fingers and toes are in my language the same) which improved, but i dont find it related to any kind of als improvement. topic improvements (few) on me are meaningless, so they are not important even to mention them (even i did). i am writing about myself, but as it is known, everyone is different.