Sorry, I have questions

[Green Queen]

Good morning all.
As you know, I have a 'kind of' diagnosis of PLS or it's variant Mills Syndrome (6 neuros can't be 'kind of' wrong, can they?) Still waaay in early stages and even though I think I'm asking the right questions...am I?
So, if anyone can answer these to the best you can, I would be extremely grateful.

I'm pretty sure Mills is unilateral, but how far will the progression go?

What do all these Meds do? I get leg spasms at night...for that?

When my leg spasms, the worst part is just before the spasm, the build up. Not sore, but very uncomfortable. 'Normal'?

When my leg does spasm, my foot shakes uncontrollably for a second or two after the spasm stops. Again, is that normal and does it have a name?

My hand is doing the fist thing. When I notice it I open it out as best I can. Will there come a day when I won't be able to open it?

Lastly, does anyone wear the AFO that attaches to laces (I think). I wear a carbon fibre AFO ($$$$$$$) that is big bulky and heavy and I need two different size shoes. I would like to try something so I can wear some prettier shoes...I'm a girl! It's my job to want pretty shoes! Anyway, I don't want a lot of expense to try something if it doesn't really work.

THANK YOU for taking the time to read my ramblings and respond.

God bless, Janelle x

 

[Tractor Boy]

Janelle, the uncontrolled shaking may be a condition called "Clonus." The shaking can last from a couple seconds to a minute. To me, the word "Clonus" sounds like some distant planet in outer space!

 

[Green Queen]

Thanks TB. I have clonus when my foot is on the ground and have often wondered if the two were part of the same family so to speak? It's a marvel to watch, especially as it is something so uncontrollable.
I will be honest though possibly deny ever saying this, I agree with the planet thing just maybe not the distance as I can't but help think of "Uranus" when thinking of clonus!

 

[Nikki J]

Hi Janelle I hear you about the afo issue. What you are describing I think is specifically for foot drop. Is that your only problem with your leg? If you have weakness elsewhere I don't think it would work. If you are talking about something else could you describe it in more detail?

 

[Green Queen]

Hi Nikki. I have foot drop, but unsure I guess if that's the only problem or main problem. My ankle doesn't work anymore and neither does my knee. Or toes, only the darn babinski. When I walk I swing my leg from the hip. I can bend my ankle and knee, but need help with the ankle. The knee is movable on its own, depending on whether I'm wearing the heavy shoes etc. it also bends during the night and now hurts to straighten out in the mornings.
I hope this helps you help me!
I NEED pretty shoes!
God bless, Janelle x

 

[Nikki J]

That swing is because of foot drop. I do it too. Makes it hard to pull a rollerbag when traveling. That is how I noticed mine. But it sounds like you have more issues as do I. I have ankle and calf weakness. The afo is supposed to 1 keep my ankle from collapsing 2 keep my foot from dropping and3 provide support for my calf to preserve strength. The orthotist ( who is very experienced with MND my clinic sends everyone to him and he has worked with MND pstients for 30 years) told me that as my thigh gave way it would somehow help a little bit too. I think because it is preserving the thigh muscles from having to work to hold up the lower leg. He also said getting the afo early would help preserve strength
I wish I had good news on shoes. The footplate on my afo was trimmable and he made it close to my foot to length but the plate is wider plus the way my afo is it needs to push out on the inside. I have yet to find anything cute or stylish that works. Neither has my sister who tried harder than I have. Look up the vain girls guide to ALS. It was written by a comedian who had ALS. There is a lot of truth there. She did say hang on to your cute shoes you can wear them when you are in a chair 24/7. We are finally getting some nice weather here and I have some really cute sandals. Oh well

 

[Tractor Boy]

Janelle, if I had to migrate to a distant planet, I would much rather go to Clonus rather than Uranus! Just saying! TB

 

[Green Queen]

Thanks Nikki. All makes sense, I've pretty much always known I can't give the big AFO up due to my ankle. Yet more denial...Loved the Guide. Thanks so much for that!

TB...yeah. No argument there!

God bless, Janelle x