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Early progression

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Xandr0s

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Hi Guys, my ALS has been very slow and even static for a period of over a year. But in my recent tests, early neurodegenerative changes have shown up all over my body.

I guess I'm trying to figure out if I'll start collapsing all together or I'll experience periods of deterioration in various parts.

Physically, atm, I only have weak hands, and tongue. And my legs get fatigued after excessive exertion (I do tend to like walking a lot). This leaves my everyday life largely unaffected as I adapt - so far!

Thank you for reading through,
 

Nikki J

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Did you have another emg? Was that the testing that showed neuro degeneration? An emg can show issues in advance of symptoms so it could indicate impending spread. That doesn’t mean instant paralysis though. I have weakness in all my extremities but I am still functioning

More often than not if you are slowly progressing you will stay slow though it is not a rule Try to use this information to make any needed changes in your living situation
 

Xandr0s

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I did have another emg. Thank you for sharing your personal experience. I guess you are on slow progression as well?

Tbh this is the toughest part, to try and plan for it when you have no idea how it'll pan out. Now I have degeneration in all extremities and jaw/tongue. I guess with time, It'll be evident on where I'm weakening more and adapt accordingly. For now, I guess I'll just condense down whatever I wanted to do in life and continue living the best I can unless I need major changes.
 

Nikki J

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Yes very slow progression here. It is a great blessing but it does make it easy to procrastinate making changes. Definitely live your best life but if you know something needs doing do it early. I delayed moving and it made it much harder than it needed to be. Good luck
 

KarenNWendyn

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I also have EMG changes and weakness in all regions of skeletal muscle but manifest failure primarily in the legs and hands.

Different body regions can have their own rates of progression.

I echo Nikki to live your best life possible but to anticipate changes and prepare for them.

Eg, do home remodel early, get the Advanced Directive done ASAP, get financial affairs in order, and start voice banking before your voice goes. Also — big one here — strengthen your ties with family and friends and build your circle of support while you have a chance.

One advantage of slow progression is that you have more time to prepare, so make the most of that advantage.
 

Xandr0s

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That clears out a lot of things for me with regards to progression. I would hold off on Advanced Directive given I am far from the state where it'll be hard to do so. I'm only 24 so I don't want to put more emotional stress on my parents - I do have an idea of what I want, I'll just loop them in with time.

It definitely is an advantage, to have more time to react and adapt.
 

lgelb

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An advance directive, should anything happen (which doesn't have to be ALS-related) should actually reduce family stress. So whereas you may be progressing slowly, I would still get it done, so it is done, and gives you a context to speak with your family so that they know your wishes and are at peace with them.

I agree with the rest of Karen/Nikki's advice as well. Hope for the best, prepare for the worst, and then get on with your best life.
 

wishmobbing

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That best life possible sounds good. Lots of good advice here. I did all the advance directive and legal stuff even though I wasn't the one diagnosed with ALS and might live to be 90. Life is always terminal and has surprises galore. This disease makes you think about stuff others avoid until it's too late.
 
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