Mourning the loss of movements

[Scotiaspirit]

Last Friday night (week ago) when I went to bed I was able to bend my arm normally for the most part, had severe cramps through the night in both arms simultaneously. Upon awakening Saturday AM, I no longer able to move my arm at the elbow beyond 90 degrees position inward and unable to straighten my arm out. This disease is incredibly fast in how it is like a thief in the night robbing movement. Others who have lost movement, was it fast like this or more gradual for others? Thankfully I can position my arm to still type (today) but no longer can scratch an itch on my head, or eat with my right arm (I am right handed). Learning now to awkwardly feed myself with my left arm. When one arm starts, how long before it may hit left arm?

 

[azgirl]

Your thief in a night is a good analogy. Every morning I find myself waking up and checking out what will and will not move. For me my left hand, weak side, gave out months before the right side, but the progression seems different for everyone of us.

 

[tripete]

I have not experienced the sudden loss of any body parts but the more gradual loss. I am sure at some point things just wont work. I have had times upon waking where it seemed like thing stopped working as you describe but in a day or two they begin functioning again in a more limited manner.

I avoid mourning any loss as I consider those on this forum who have many more physical limitations than I do. As mine began with my respiratory muscles my breathing is much worse than are my limbs. My hands and feet (particularly the left ones) are rapidly loosing strength and fatigue quickly as are my core muscles.

I do not wish to minimize anyone's loss. That said, for me, I consider the many on this forum who have been completely physically ravished and have no use of their arms or legs. I mourn for their loss more than for my own limitation which pale in comparison. This gives me, what I hope, is a healthy perspective on what I have.

 

[affected]

I would have some massage done on the arm, and you may need daily massage to help relieve the tension.

My Chris was rapid progression, but that seems very fast. It could be a spasticity issue as much as loss of muscle control.

It's crap for you I know whichever way, but I hope some massage (either by your partner or make sure it's a massage therapist you truly trust and who understand ALS and won't try deep tissue or too much ROM on you).

I feel it is a healthy thing to acknowledge and mourn each loss so you can take joy in what you do have each day.

 

[bear1973]

I don't think there is anything more difficult about this disease than losing strength whether gradually or quickly. It's also not pleasant to actually witness the muscle loss as well.

As for me, there have been about 2 occasions where I can remember noticing atrophy overnight....it was very disturbing to see the changes in just one day...having said that, it's been a while since I've noticed a lot overnight....now I just notice that gradually there are things that I cannot due like I did a few months ago. Everyone seems to be so different with this disease.

I think it is important to talk about it though.....as a once very strong and healthy individual there are a ton of emotions that go along with losing strength...anger and despair top the list for me. The challenging part with this disease as well is that it doesn't really give you much time to grieve. As for me now....I go through the motions usually for a few days, then accept my new normal...and on the best of days, focus on what I can still do rather than vice-versa.

 

[Scotiaspirit]

My arms are a fraction of the diameter (especially in the upper arm muscles) as even compared to one year ago. It is like watching the body shrink from the outside in in slow motion, and not anything we can do but accept that new normal. A constant reset of the can do's and the can no longer able to do's. My fasciculations are now everywhere from the neck down (that I can outwardly feel). Even this far out from dx day, I still cannot get used to them, try to tolerate them so I do not go stir crazy, but they still give me the eebee jeebees. I compare it to trying to get used a new body that does not feel like my own (that I was used to the first five decades of my life).

 

[Scotiaspirit]

It could be a spasticity issue as much as loss of muscle control.

My doctor noted that it is very spastic in the area too. We are now 11 days out from when it happened, and I still have not regain the movement (bending at the elbow) but the feeling of tightness has alleviated some since that time. Slowly accepting it as a new norm. At least my fingers are still working enough that I can type yet, lay my arm on a pillow.

 

[Nuts]

My heart is with you and all PALS. My husband's losses have been gradual, so it's no surprise when he can't do something, but his mourning starts before movement stops. He's incredibly brave and emotionally self sufficient, so when he does turn to me I'm both unprepared and more anxious about meeting his needs. Acknowledgement and reassurance is all I know to do. I can't imagine living in fear that morning will bring an unexpected loss.



Big Hugs,
Becky

 

[SKlocinski]

I am always waiting for the other shoe to drop. Every morning when Tom gets up, I think to myself "Yes, he can still walk". And I am also waiting for the day when he loses the use of his thumbs completely. Lately he cannot always sit up in bed and I have to take his hands and pull him up. (We are waiting for a hospital bed from the VA). He can then swing his legs over the side of the bed and stand. He is also emotionally self sufficient but he is learning to open up a bit more which helps me a bit to know what direction to go in.

 

[affected]

Make sure you get lots of massage and good ROM on that arm - it won't fix it but it will keep it moving a lot longer and help lessen pain.

It is similar for the CALS watching the body deteriorate but I still cannot imagine what it would be like to watch it happening to your own body :shock:

 

[nebrhahe53]

It's horrifying

 

[Scotiaspirit]

I see my physiotherapist again on Monday of next week and hope she can work on it to see if it can be improved any at all. I still find myself trying to put a fork to my mouth, or take a sip of a drink, and the arm stops short, the brain wants it to go, but the muscles put the early brakes on, and ..... tough to get used to, but I am sure this is the beginning of more of these things yet to come as this terrible disease imparts its brutalities. On the flip side, I am very thankful that I can still type, still use my left arm normally, and trying hard to accept this new norm, wondering, what will happen next? I am grateful for the movement I still have with my left arm. It can always be worse.

 

[twitchykitty]

I hope physio can really work on that arm, you mentioned cramps before hand so with some luck maybe it's just seized up. I had regular massages until I could no longer get on the table. It was very noticeable how sore and stiff I am since stopping. R u on baclofen ? If not it may help.

I empathise with the twitching , for a year post dx it was a constant reminder of what was happening until it just became the norm

It's good to focus on what movement you have left, I found that helps take the edge off as you said, but I'll admit it's not perfect and I still have a mental hissy fit at times . Best not to think of what's to come but live in the now, unless of course it's in the practical sense

Wishing you a very slow progression

 

[Alex123]

Is it possible that the elbow got dislocated? That is what happened to me during the night on my knee, and 8 hour later I accidentally pushed it back in place. But I don't know if that can ever happen at the elbow.
Alex

 

[patoyeah]

Alex, u said accidentally pushed it back in.

did u know it was dislocated, did it hurt?

i have dislocated my knee cap, and popped it back in, many times in my youth... always noticeable, painful.


i am guessing, we feel what we feel, i am not sure how much we can control that, in the moment? for me spiritual / attitude work, prior to an event influences my feelings and experiences.... the hardest part might be finding something that works.

take care,

pat