Looks Like We are in A Falre Up Sort of Speak

[wewillbeatthis]

Hello,

I refer to the last two weeks as a flare up cause my mama has a mild case of lupus and when she is going through stuff the doctors refer to it as a flare up..

Dad the last couple of weeks seem's to be struggling walking. He is slower, when I see him he is holding onto to things all the time. When I ask why he says that he feels much safer and does not want to fall. Why is it that he goes through times when he is secure and will walk all over and then times when he will not? Any thoughts?

 

[dana]

Have you thought about getting your dad a walker? I know that by getting one, it seems like the disease is getting worse because he would be depending on the walker, but it might make him feel safer and more willing to walk around. Just a thought.
Dana

 

[MarciaA]

My sister describes her legs as going between feeling like slinkys and stilts. She's gone to a walker and/or cane pretty much all the time and it does make her feel much more secure. Her walker has a seat on it so that she can sit down whenever she gets tired. Good luck with your dad!

Marcia

 

[wewillbeatthis]

We spoke about a walker and he just says that he is not ready for that. I don't know we are going to just let him be and he will tell us when or if he wants that.

Actually this weekend he was doing really well. I really think it is all a frame of mind with dad. He has always been one to over think things.


We will see thanks for your reply..

Jen

 

[Al]

One thing about the walker. I don't have a lot of strength in my hands so if I start to go down the walker isn't going to help. Now I have suggested to the wife she could Duct Tape my hands to the walker and I might not lose my grip. Same with the cane. They tried to get me one but no muscle left in hands and it hurt more to hold it. Couldn't put weight on it even the one with the upper arm brace. So I just walk real careful and make sure I point my toes up.

 

[wewillbeatthis]

Al,

I am going to mention this to dad about trying to walk with his toes pointing up and see if this makes it any easier for him... Have you ever tried the AFO's?

 

[MtPockets]

Canes might help

When I first started getting balance and leg problems I tried a cane and then began a collection of canes. I have all kinds now even one that was in the family for over 125 years that has alligators, frogs, and other stuff carved on it. Maybe if you started with a nice cane as a gift he might give it a try and it could help him keep his balance. Just a thought.
God Bless and have a great day.
AL

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[wewillbeatthis]

Mtpockets,

Dad does use a cane.. we have bought him so many and he refuses to use any other then the ugly one that the doctor gave him.... I think that he feels more stable with the grip on that one... He says that the others are either to thin, to slippery he always has some excuse but bottom line is he does not want to use any other but that one... Dad is hard headed... No nice way to say it... I love him with all of my heart and he is a great person but he is hard headed....

Jen

P.S..

do you have any suggestions on where I can look online for canes... The ones I have odered he did not like...

 

[dana]

Jen,
Have you also thought about getting the paperwork in order for a wheelchair? If your dad is having trouble walking, the wheelchair might come in handy faster than you think. I know for my dad, it took a couple of months to get the chair, and from what I have heard, that is fast. Don't wait until you absolutely need it, because then it will take forever to get it.
Dana

 

[Al]

Sorry wewillbeatthis but I'm not sure what an AFO is. I'm sure I'll feel dumb when you tell me because it's something simple right? AL.

 

[wewillbeatthis]

No question is dumb Al

It is an Ankle Foot Orthotiec (I may have spelt that wrong).... The PT mentioned it to dad....

 

[Al]

I was right it was simple. Up here we just call them Orthotics. I have them in all my shoes. I have real flat feet and after I was diagnosed and had muscle wasting in my feet he adjusted them. I'm due for another adjustment now. Maybe next week.

 

[JAndrew]

I was right it was simple. Up here we just call them Orthotics. I have them in all my shoes. I have real flat feet and after I was diagnosed and had muscle wasting in my feet he adjusted them. I'm due for another adjustment now. Maybe next week.

Hey Al,

were the flat feet caused by ALS or have you always had flat feet? I ask because the Neuro that I saw sent me to a Podiatrist that immediately noticed how flat my feet are. I never really had a high arch in my feet, but he said the arch in my right foot nearly touches the floor. I have posted here before and I have other symptoms as well, so Im started to get worried all over again.

Also, did you have any cramping or pain along your arches prior to your feet going flat? About 2 weeks ago I had significant pain in my arches with some occaisional cramping along the arch. No twitching, but I had some tingling (mainly at night).

Are there other Neurological disorders that can cause muscle wasting besides ALS or is losing your arches a "tell-tale" sign?

Jon

 

[Al]

Hi Jon. I always had very flat feet. When I was working I wore a 9 1/2 shoe with insoles (orthotics) for my arches. After a while I needed a size 11 not realising that it was probably more flattening from atrophy. Now I need a 13 wide because of swelling. Can't remember any specific arch pain though.
AL.

 

[freddiesnetty]

Hey Al, Freddie is going to go and get fitted for his afos this week, should I buy him new shoes to be fitted with or wait till afterwards? I don't know that the afos will help, he was supposed to get them earlier on but at that point he was still very mad about all of this and pretty much refused everything....He is now decided that they may help him walk a little bit better....do they help you? His one foot has drop foot so bad, I am hoping that they will help him..