Old 08-08-2018, 06:29 PM #1 (permalink)
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Default Rate of disease progression

I’ve read people on this forum saying “progression is slow until it’s not”. I’ve also heard stories about people diagnosed with ALS/ MND who look back and realize they had inklings of their disease years before diagnosis.

My own experience is that I may have had some signs of ALS a few years before actual diagnosis. My progression has been overall very slow, but the last several months, it appears to be speeding up, particularly in my hands, where the functional losses are quite apparent and mounting by the week.

I know progression isn’t linear and it can slow down, speed up, and even plateau rather unpredictably.

My theory is that the fewer viable motor neurons that remain for a given region (e.g. hands), the more noticeable the losses become and the progression seems to accelerate. For example, if someone has 1000 healthy neurons and loses 5, they won’t notice much change, if at all. However, if they have 10 healthy neurons and lose 5, the change is extremely noticeable. So it would follow that disease progression (assessed by functional loss) might seem to speed up over time as the number of healthy neurons remaining decreases.

Does that theory sound plausible? I’m curious what others think, and if others have noticed an apparent increase in their rate of functional losses over time.
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Old 08-08-2018, 06:39 PM #2 (permalink)
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Default Re: Rate of disease progression

I discussed this once with my neuro np and she agreed that there can be a tipping point where a small change in your underlying condition results in big functional losses in a short time
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Old 08-08-2018, 06:53 PM #3 (permalink)
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Default Re: Rate of disease progression

I agree, there are tipping points. My husband went from walking a couple of miles to a couple of blocks overnight. He also went to needing nearly constant (which later became 24/7) BiPAP overnight.
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Old 08-08-2018, 08:30 PM #4 (permalink)
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Default Re: Rate of disease progression

The first year I hardly progressed at all. Then I turned my ankle and suffered a bad sprain. I thought I'd never walk again. It was my good leg and it healed so I started walking unassisted again. From last Summer to this Spring, I noticed very little progression. During the past several months, both legs are weaker and the atrophy is apparent. My hands are extremely thin and the atrophy is also apparent there. Both feet have toes curled but I can still walk across the room on my heels and toes. I can no longer raise up on one foot at a time. For me everything, including progression, is compounded by extreme daily pain in my back which is now in my knees and other joints. Mayo even referred me to a rheumy to see if I had something else going on but my neuro expects it's fibromyalgia.

Karen, your theory makes sense to me.
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Old 08-08-2018, 09:07 PM #5 (permalink)
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Default Re: Rate of disease progression

Karen I think that is definitely true and I think it is more noticeable in slow progression. That is where people can seem to lose some functionality overnight and think progression has sped up for a while. Instead it may just be that going past that tipping point makes it seem to suddenly speed up.

For those like my husband who was rapid progression it made no difference so far as speeding up or slowing down. We reached tipping points in some area of his body every single week, literally. Still the same principal I'm sure, but none of the slow bits.
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Old 08-09-2018, 12:50 AM #6 (permalink)
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Default Re: Rate of disease progression

As we all know there are circumstances that may change progression.

There is a growing concern about PALS being anaesthetized for a
considerable time for an unrelated surgery. It is a big caution flag
for those with Alzheimers.

And the so often written about… falls.

Then there is the “person” and how a PALS handles getting a confirmed
diagnosis of ALS. The impact maybe rather subdued at first for some
or it may be devastating for others. The devastation carries on and they
just give in which I’d bet accelerates progression. Fighting is without
doubt the best approach but… for some it makes no difference.

As time and progression goes along for others... some may have the big
“reality hits” moment.

A diagnosis of ALS does not make one immune from anxiety,
depression, sadness, frustration, hopelessness and even fear flashes.

Any PALS who hasn’t experienced any or all of those emotions at
first or along the way is made of steel.

I’ve never understood those who almost proudly announce they
have been diagnosed with ALS. Whatever…

This is a devastating terminal disease. The same as one being told
they have terminal cancer.

Hopefully if a PALS is struggling with emotions they talk to their
Neurologists so he/she can arrange counseling. Mine has.

Progression is the lingering scary part of this disease.

Last edited by Clearwater AL : 08-09-2018 at 12:55 AM
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Old 08-09-2018, 08:12 AM #7 (permalink)
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Default Re: Rate of disease progression

Tipping point for sure.

Once a loss happens never goes back,on to the next loss which seems to come on fast

Do all the things you can while you can

Tell everyone you love them
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Old 08-09-2018, 10:07 AM #8 (permalink)
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Default Re: Rate of disease progression

my progression has been almost exactly linear with a few blips. Yes I believe thereis tipping point where enough neurons die that you wake up one day and suddenly something else won't move but for me this has marched along in a linear loss of neurons.

two blips of decline were due to major falls that never healed. One positive blip that lasted four months when I was trying lunasin and regained core strength and short time use of right hand. Could have been placebo.

my progression is on average for those of us on five year plan.
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Old 08-09-2018, 02:24 PM #9 (permalink)
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Default Re: Rate of disease progression

I am right there with ya azgirl.

The odd thing is with people even family they are not on daily update and so innocently treat me as the last time they saw me.

No biggie just observing

Love ya
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Old 08-09-2018, 09:30 PM #10 (permalink)
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Default Re: Rate of disease progression

Perhaps progression is more linear than what I perceive.

I perceive the progression as a quantifiable loss of function. But there is probably progression happening all the time that slowly degrades things until I finally notice that quantifiable loss.

I do believe my progression slowed down quite a bit when I quit work. I worked a demanding job that I loved, and it took a lot out of me. When I stepped away from that, the physical stress on my body was greatly reduced and my progression seemed to slow down.

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Old 08-10-2018, 05:34 AM #11 (permalink)
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Default Re: Rate of disease progression

Yeah, a tipping point for sure.



Krissy's disease progression, although it was rapid, could be represented by a long linear downward line, with a rapid drop at both the beginning and the end. So there was, at first, a sudden drop when she went from seeming well to losing use of her foot. Then the linear decline as she lost about one function per month. Then "bam," in August she was hit by a slew of losses--about one every few days. That was her last three weeks.


There were no clues in advance. She would just wake up each day and yet another function was gone.


(A few times, the loss of a muscle was preceded by twitching a few days prior.)
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Old 08-11-2018, 10:05 AM #12 (permalink)
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Default Re: Rate of disease progression

Thank you all for your input.

The “tipping point” concept resonates with me. Clearly some critical mass of neurons dies to reach the tipping point for a given region.

My hands have been getting weaker. Last night, suddenly.... just like that, I was not able to remove a contact lens (I did eventually get it out but only after resting the hand for several minutes before trying again).
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Old 08-11-2018, 10:30 AM #13 (permalink)
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Default Re: Rate of disease progression

Karen, just interested... you can share on this or not.

What emotion did you feel realizing another thing was failing? Somewhat suddenly.

For me when something fails or is failing... sometimes I get a flush of fear. I think
about days to come. What next.

Again, just wondering if you wish to share.
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Old 08-11-2018, 11:32 AM #14 (permalink)
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Default Re: Rate of disease progression

Al, pretty much the same as you. Anger, fear, and wondering “now what?”

The hardest loss for me was my ability to play bassoon. I feel extremely fortunate to have been able to play it for a year following diagnosis. My hands started going downhill around March. I made numerous ergonomic modifications to keep playing the instrument, and it was far from the skill and technique I had in the past.

Then on 7/20/18 came another tipping point for me. I could only play a couple minutes and then my fingers would be hard to move and would also spasm. I feel like my heart has been ripped out of my chest.
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Old 08-11-2018, 04:30 PM #15 (permalink)
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Default Re: Rate of disease progression

Karen,

I bookmarked your performance. I know it's little consolation but your music will live on and it will enrich the lives of others.
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