Old 11-01-2011, 01:28 PM #1 (permalink)
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Default Well...this is a predicament

First off...I have no idea where to post anymore....so I find more often than not lately I have not posted at all. I have been diagnosed, so technically I am a pals, but I am still getting really extreme genetic rare disease testing to see if it could be 'anything else'.

Anywho..that is one predicament here is the other. Insurance sucks. Anyway, you all knew that. But finally I have gotten back to a PT who has agreed that I am a bad walker and is trying his best to keep me 'safely walking' which is coming to a close here soon, before assistive needs.

Ok, I walk but it looks horrible. Looks like I am a baby trying to take its first steps, all wobbly, can't go in a straight direction, and using whatever may be near by to hold on to THis is on a good day.

Today is a bad day...ok very bad as far as walking goes...because well I can't. I did a lot yesterday as it was halloween and we do a haunted house. I stood, walked way more than I should of...I tried to conserve energy but ya know...got caught up in the excitement of it all. Today, I can't walk. Got out of bed and was that surprised when I realized my legs had given up and I was on the floor!

So I slithered like I snake...down the stairs...scooting along..thinking one thing...if I can't walk I want to be able to watch t.v. (Ok, thinking obviously out of whack on this one but whatever...I made it down the stairs and to the couch.)

Since then I have tried standing up and down and I can do it for maybe 10 seconds and then fall back down. I believe my legs are just so fatigued from yesterday that is is a good movie couch potato day till my legs start to ...um function again....I hope.

Anyway, who knows where I am going with this, I forgot about 5 minutes ago when I started typing But, if I am unable to get up tomorrow...should I be contacting some dr. or something to get something so I can walk or get around? This may sound absoultely ridiculous...and I am not sure of anything anymore so if you have some advice for me that would be good. Also, if I am in need of lets say getting a wheelchair 'immediately' does anyone have some good advice/where I can get it...blah blah on this. Thanks
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Old 11-01-2011, 08:32 PM #2 (permalink)
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Default Re: Well...this is a predicament

If you have been diagnosed with ALS, you really need to apply for SSDI. I know you are young, so I don't know if you have enough credits.

But to answer your question: If you can still use your upper body, contact the doc that d'xd you with ALS and ask for help in evaluating you for a walker or PWC.
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Old 11-01-2011, 10:08 PM #3 (permalink)
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Default Re: Well...this is a predicament

wow, you rock!
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Old 11-01-2011, 11:45 PM #4 (permalink)
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Default Re: Well...this is a predicament

Kmen- you've been here long enough to know where to look to find help. Sorry about the leg thing. Usually most folks bounce back in a couple days unless you damaged something else in which case it's off to the doc.

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Old 11-02-2011, 10:43 AM #5 (permalink)
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Default Re: Well...this is a predicament

I agree with Al 100 percent. I too have overdone it a couple times and a couple days of rest I am back to where I previously was. I hope everything works out. I for one dont have aproblem with you posting in the pals section and hope at somepoint you post and say they found something curable!
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Old 11-02-2011, 11:18 AM #6 (permalink)
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Default Re: Well...this is a predicament

When I was first having problems walking my wife and decided to rename ALS to DLS. Drunk Leg Syndrome !
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Old 11-02-2011, 01:00 PM #7 (permalink)
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Default Re: Well...this is a predicament

Kel, contact your local ALS Assoc. They typically have a loaner closet with everything you can think of in it and will loan you things like wheelchairs, walkers or whatever you need for as long as you'd like.

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Old 11-02-2011, 01:53 PM #8 (permalink)
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Default Re: Well...this is a predicament

This is a lesson in not pushing ourselves to do more than necessary. i would definately call ALS assoc. for a wheelchair. And apply for SSI disability. I did not have enough hours of work for SS so I am now on SSI/Medicaid. They recently paid for my new power wheelchair, which I think you should get on it right away. I try to stay one "step" ahead of what I need, so though I can still walk a little, I have my Power chair now so I can learn to drive it before I need it. Good Luck! Hope your legs come back!
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Old 11-02-2011, 02:48 PM #9 (permalink)
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Default Re: Well...this is a predicament

I sure wish I could spell.
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Old 11-02-2011, 03:50 PM #10 (permalink)
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Default Re: Well...this is a predicament

HI Kell

First, let me say that I sympathize with the struggles. Really.

But..


1. If you have been diagnosed by two doctors with ALS-- you know that you can apply for SSI.
2. You know that if you are unable to walk that there are loaner closets for things like wheelchairs.
3. If you literally can NOT stand without falling--that something is going on. Seriously. Slithering down the stairs? Seriously? Now, I've had my legs go out and had to go down the steps one step at a time on my butt using my arms--I have no idea how one would slither down them.
4. If your legs are that weak from ALS--no amount of PT is going to 'fix' that. You need aids for walking--obviously. You know that. A competent PT knows that. My neuro FIRST VISIT insisted I use a walker based on my spastic gait alone for safety. Any competent doctor would. In my case, it won't work well due to my arm weakness--so now I use a walker on wheels at home and a scooter when I'm out. How in the world can a PT make your legs safe for walking? If it's foot drop, you need a brace. If there is no strength in them--it's not rocket science-you need to use aids.

It doesn't matter if down the road they rescind the ALS diagnosis--you apparently have it now--and regardless, symptoms and signs need addressed.

Where to post? This is, in large, a RANT. I have made several of them Rant away....but don't be silly! You don't need us to tell you that you shouldn't be walking unaided if you're falling.

Others with ALS are able to go quite a while with aids like walkers, AFOs and canes--but if the strength isn't there--a cane won't keep you on your feet.

Hopefully, I won't be bombarded for being mean--I'm not intending to be.
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Old 11-02-2011, 09:56 PM #11 (permalink)
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Default Re: Well...this is a predicament

I will say a major concern is not falling and breaking something, so getting braces, walkers or chair should be on some doctors agenda. Please, please try to make someone help you.
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Old 11-04-2011, 07:36 AM #12 (permalink)
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Default Re: Well...this is a predicament

Hi Kel

How are things now?

Feeling any better?

Thinking about you.

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Old 11-10-2011, 11:31 AM #13 (permalink)
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Default Re: Well...this is a predicament

Well I can walk again...very wobbly and my left leg will give out on me if I stand alone on it. PT is looking into braces or some sort of supoort for me. Still no definite diagnosis, als diagnosis I found out was retracted for the time being..so there goes that help for the loaner closet... ...still waiting for those 'rare' genetic disease tests to come back...hopefully in the next couple of weeks.

Notme, I was trying to add some humor to my post because I didn't know how else to feel when I couldn't walk. I kind of armied crawled and did the step thing like you did to get down the stairs.

Everyone else. I don't mean to upset anyone with this post. I realized after the fact when Al posted, that I have posted something like this before. I am having bad memory problems so I am sorry to 'waste your time'. I just didn't realize I had already asked it. If someone could tell me where I may 'revisit' my posts so I can refresh my memory ,possibly I could look at those before posting anything further. Thanks.

Kel
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Old 11-10-2011, 12:14 PM #14 (permalink)
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Default Re: Well...this is a predicament

Hey Kel, your not upsetting us. All of us have been at your place at one time or another. Feel free to pm me any time you want. I'll listen. I know your really concerned as you should be. I'm worried about your situation and hope it's something treatable.
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Old 11-10-2011, 12:31 PM #15 (permalink)
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Default Re: Well...this is a predicament

Yes, me too (what Susan said)

You're not upsetting me either.

About social security, even with a solid ALS diagnosis you would have had to paid ss taxes (worked) for 10 years to qualify to receive social security benefits. So, you are so young that this is probably not an option for you. You might qualify for SSI and Medicaid.

I personally thought "slithered" was cute. Keeping a sense of humor has been proven to help people be healthier, regardless of what is wrong with them.

If you want to read some hilarious accounts that our member's have shared in how they dealt with growing disabilities, do a search of BethU's posts. Also, there is one by Al, something having to do with mowing the lawn... I will find it and post a link to it here.

http://www.alsforums.com/forum/peopl...wn-mowing.html

To find what you've written in the past, click on your name to view your profile page. Click on the statistics tab, and you can view either by post, or by threads started by you, what you've written. I don't know how far back chronologically you can go though.

I hope the latest testing you have exposes a treatable condition. good luck, and keep finding the positive.

Last edited by rose : 11-10-2011 at 12:44 PM
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