Question on progression

[Sprawl]

Hello all been quite a while since I posted, been a really rough year, but I have a question if I may...

Those that have lost use in your legs, can the leg muscles deteriorate before having drop foot?

I ask because I am having harder time walking these days, and have to use a cane. But I have no drop foot and still able to go on heels and tip toes. One doc informed me that it always begins at tips of appendages, ie feet/hands. The only other thing I can come up with is that my legs are just simply losing muscle due to drop in exercise because I fatigue so quickly. I believe majority of the weakness is coming from quads/hams.

Any insight would be greatly appreciated. Thanks.

 

[lgelb]

There is no reason to believe "tips" would or wouldn't fail before larger muscles like quads. Whoever said that is misinformed. Please take all necessary fall precautions, e.g. from cane to rollator to wheelchair as the disease progresses.

Best,
Laurie

 

[Sprawl]

Had to google rollator haha, docs told me that wont be an option for me since one arm is unusable. So for now the cane is staying until absolutely have to go into the chair... sigh that dreaded chair.

 

[WendyWooG]

Hi sprawl
For me there is no logic to how this thing is progressing, it started with dropped foot in my right leg and moved on to my left arm. My left leg is now affected but the weakness / atrophy is worst around my hip bum and thigh, there is no drop foot on that side.

I too don't use a rollator because the left arm is useless but I do use a walking frame it's a bit like a zimmer with tiny wheels at the front and walking stick ferrules on the back. It has kept me shuffling for several months when I was too unsteady with the cane, and is much more stable for me for transfers, although my carers do have to brace it now for me when I stand up initially. My O.T has said I will need a hoist soon but this is working for the moment.

Wendy x

 

[diagnosed2016]

My husband main issue is his calves right now (which leads to a kind of drop foot but not really- he can still to heels but not toes and his foot doesn't drag) so it would seem that there are other muscles can go first

 

[affected]

My Chris was bulbar onset and it really did seem to creep from his throat area down his body in many ways, but no true pattern.

With his legs he lost his bum, then his thighs, and he never developed a true drop foot on either leg. He did find it harder to lift his feet well, but it was more a loss of thigh muscles that prevented him from lifting his entire leg, rather than lifting his leg to find his foot dropping.

Whatever area of the leg or foot is being affect, please DO NOT FALL. The injuries can so totally change the rest of your life bringing pain and rapid progression.

Yes a PWC is hard to accept, but face planting and pain that may never go away is far worse. No good choices with this monster I'm afraid.

 

[Firefighter58]

Hi Sprawl, don't be afraid of help, affected is right I had two falls one was a face plant on the concrete driveway and the other was a backwards fall from the second step. of the basement stairs. Since then i used a stair lift and my other transportation is a cane or walker and for more distant journeys I use the wheelchair, all are better that a fall.
Al

 

[KimT]

Mine started out with cramps and fasciculations in my left foot. That was over two years ago. I can still walk on my heels but my calves (both of them) are very weak. Before I fell I was stil walking pretty fast BUT it felt like I was walking in knee deep water and I got tired after only 100 yards. Last time I was measured it showed weakness in my left arm, both wrists, and hips. The only pattern I have observed is the fasciculations. Started in left foot, then slowly crept up left leg. Then moved to right foot and right leg. Then butt, then back and ribs. Now both arms, face and the latest, tongue.

 

[Sprawl]

Sigh, guess I was just kinda hoping that it wasn't a progression. I appreciate everyones concerns, luckily I am not at the point yet that I will concede to a chair. I take smaller steps now, more like a shuffle and that seems to be working ok for now.

 

[swalker]

Sprawl,

I don't see it as conceding to a chair. Getting one does not mean you need to immediately use it much or even at all.

But, getting one while you still have good mobility will allow you to do things like

• adjust the chair to fit you
• figuring out what kind of wheelchair hauler you will get and taking the time to find a reasonably priced one that fits your wheelchair and your needs
• learn to drive the wheelchair and repair the inevitable dings you will put in the walls around you home
• not be completely stranded when the wheelchair needs to go in for the inevitable service during its first few months (mine had to go in multiple times to address minor to major items).

I encourage you and everyone to get the wheelchair early. You will eventually need it and getting it early is really a lot easier on you than getting it late.

Once you have it, you can use it as needed. Back when my wheelchair was new, using the PWC a few hours a day allowed me to do many other things during the day I could not have done otherwise. It also opened up the world to me again. I use it much more now and am so grateful to have it and the wheelchair van. I can go shopping (I love zooming around Costco). I can sit at a restaurant while my wife eats. I can zip out of the house and go for a "walk", which I could not do without my wheelchair.

Steve

 

[Sprawl]

Understandable swalker, i already have the wheelchair van so that will not be an issue. And I do have a manual chair for emergency use. But the only use that has gotten was a trip to the zoo with the kids, the VA has offered a PWC if I wanted it now but the renovations on house havent even started yet so even if I got it I cant get it into the house.

 

[Aussiemndcarer]

Hello sprawl, my Jim didn't get foot drop until he couldn't weight bear any more. His legs just turned to jelly he recollects.
Re house alterations; please think of mobile ramps.our OT gave us some rubber like ones that we could take with us and use if travelling. They could butt up to door ways with small steps. ( hard rubber like wedges that the chair could easily get up and over. They were good for sliding doorways too. We used one to get the shower chair up and over into the shower recess,hence no alterations were necessary.
For a larger step we had a ramp made from plywood and coated with non slip rubber like paint.

 

[chally]

Hey sprawl, I am also a vet and suggest you start requesting EVERYTHING ! The va is great but you must be very pro active and all things take time. Get the pwc now! As Steve suggest better to have it and not need it then to need it and not have it.
Check the vet sticky!
I had no way into my house with pwc while waiting for SAH grant to go through so I went to local hardware/ lumber store not big box store and kindly ask them if they would like to donate lumber to build me a ramp and they were more then happy to help . We did a little newspaper article on it so it was winwinfor everyone. Some friends built it in one day and I was then in the house with pwc . Good luck! Falls suck! Chally

 

[Atsugi]

If you must build your own ramp, make it solid. Instead of plywood holding up a 350-pound PWC and man, I suggest using 2x10 boards and actual non-skid (It looks like black sandpaper). I suggest a quart of exterior paint, tinted yellow.

It's all available (in the US) at Lowes or Home Depot.
See the ADA guidelines. At least one foot of length is required for every one inch of height of the ramp. Say you have a six-inch step up: You'll need a six-foot long ramp. Cut two of the 2"x10"x6' boards into triangles. Cut the remaining 2x10s (except two final ones) to be a little wider than your doorway, say, 42 inches. Paint all the boards on every side. Dry overnight. Then screw the 2x10s into the four triangles you made for the ramp. Then screw the final two boards to the sides of the ramp, to make two tiny walls on either side of the ramp. Finally, apply the non-skid liberally. To attach the ramp to your concrete, you'll need a hammer-drill and a masonry drill bit. TapCon makes a good screw for concrete.

Also, obtain a folding (aluminum?) ramp for traveling. I didn't use aluminum because it makes a lot of noise. I have a couple of aluminum ramps for free if anyone wants to pay the cost of shipping.