Strength, Spacicity...Progression

[Ms. Pie]

Oh, the steps. It's much easier to go up the stairs with them than without. Going down is a bit more challenging but easier than without the AFOs. Driving is no problem but I find it easier to engage the gas with the right and break with the left rather than move the right back and forth.

 

[tammyg]

One in a trillion, my dad. Dam wish it was the lottery! He started with the bulbar first and worked it's way down. We thought he had a stroke at first. Of coarse it got worse and he wrote lots of notes. I think I am the only one who could understand him when he did try to talk. Dad was lucky he could still drive his car til the day he went to "The Party in the Sky" and God stopped the suffering. I think the feeding tube helped. for awhile as far as strength and energy and weight. It had just started in his legs when....My whole world crumbled June 15,2009 @ 2:10 am

 

[old dog]

Ms. Pie - Find your comments about AFO's very interesting. If I only knew what an AFO is. I assume it is some kind of orthotic.

Old Dog

 

[old dog]

Bad Balance

I am a 72 year-old female and was diagnosed with PLS in August, 2011 after approximately two years of trying to find out what was causing my problems. My spasticity and general weakness has progressed at a rapid rate during the past year. A year ago, I could walk without assistance most of the time, although I had to be careful because of foot drop and poor balance. I then started using a cane and now have to use a walker full time.

I am interested in your comments about baseline numbers. I have been told I am strong, but the only tests that have been done are gripping hands and pushing with arms and legs as the doctor holds the limb to create resistance. Does your neuro use some sort of machine that puts a number on strength?

I now realize that I may have had some symptoms for years, but the disease did not become problematic until I had a severe bout of flu which may have been H1N1. When PLS did attack, it was as if all the areas of my body where I had ever experienced difficulty suddenly became nearly inoperable. The bulbar muscles have been severely affected, and I am rapidly losing the ability to speak. In approximately 2 1/2 years, I have gone from being a realitively healthy person with very few limitations to a disabled person requiring assistance with every day tasks.

Has anyone had a similar experience with sudden onset?

 

[stephannieb]

To the original question - it does seem logical for your strength to still be good, but for your balance to be going. My mom has it, and with her, we've actually seen an increase in strength (due to working out) but her balance continues to get worse. She's uses a rolling walker all the time now.

 

[stephannieb]

Old Dog - That's how it happened with my mom. She too might have had symptoms for years, but went from walking mostly normally to very slurred speech and a full time walker over the course of about 6 months. And then she's remained about constant at that level for about 2 years now. It's such a curious condition.

 

[Ms. Pie]

This is what my Ankle Foot Orthosis looks like.


Fooie, how do you paste a picture here?

Heck, I'll just make a video of mine later to show you.

 

[Ms. Pie]

Well, if you go to my profile and look in the trip to Grand Rapids photo album I posted a picture of my AFO. If you g***le carbon fiber AFO you can see a video in how it works.

 

[old dog]

Ms. Pie - Thanks!

Old Dog

 

[Bad Balance]

I am still ok on the cane and can do short distances without if I am careful.

Balance is an issue. Especially if I loose it in the backwards direction. That is a certain fall and I worry that sooner or later I will break simething as I do fall often.

No special machine...they test my strength as was described. Same as you. I need my upper body strength to help and to throw pottery on the wheel, so I hope it will last a bit longer.

I am afraid to exercise in fear that I will use up my remaining capacity. Feeling a bit low lately, but I cannot let the negative feelings control. We are fortunate to have more quality time.

 

[momap53]

If balance is an issue, you really need to consider switching over to a walker. Get one with a seat and brakes. It's just too risky to try to continue with or without the cane. I was finding that I was thrown off balance by the simplest things, opening the fridge, a cupboard door etc. I've been so fortunate that I didn't do any major damage with my falls. Why put your body in jeopardy when there is a tool readily available to you that will help you avoid the serious consequences associated with a fall? It's always an adjustment when adding another device but the more quickly you can adapt to this change the more you'll be able to do and you'll have some peace of mind. So will your wife. ER's are NOT a pleasant place to be. Try to imagine what your life wold be like lugging around a cast, or being laid up in bed with traction, surgery, or worse. Get some AFO's. Give 'em a try.

 

[brayden722]

I had the AFO's that went up to just below the knees for a year. My knees have become very weak so I was fitted a few months ago with a full leg AFO. It was quite costly but well worth it. It has three stages depending if I am sitting, walking, or standing for a period of time. IMO, they have given me the independence that I may not have been afforded without them.

 

[kevinw]

Strength, Spacicity, Weakness, Full Leg AFO's.....all I know is that I am soon going to have to give into my pride and use a walker to get to the bathroom in the middle of the night. It is just scary to get up in the middle of the night and have to walk that 30 feet, I don't know it seems confusing? Like stumbling with stiff legs, but weak knees, I attempted using just a cane, but there is no strength in my arms (in the middle of the night), if I were to start going down. As for now I "wall walk" to the bathroom, bumping into pictures and light switches...

 

[notme]

Bad Balance,

I worry about you. PLEASE start using a walker--it's so much better to be safe than sorry. My docs insisted (two of them) and I wasn't in nearly the shape you seem to be in!