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mom

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Learn about ALS
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FL
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Jax
I still haven't made it to the ALS clinic- they don't take my insurance and I don't have the money right now. It is really ok though, I figure if I have it I have it and the longer I wait the more likely it will show up. (Of course there could be some denial and I will admit I am kind of afraid of doctors right now :)

I need some advice. I seemed to have leveled off for a few weeks but something seems to have knocked me for a loop this week. I am having a horrible time walking. My knee keeps buckling. It was doing this some before, but now it is scaring me (and those around me). I am really afraid of falling- more at a store than at home. Have any of you experienced this? I have been lucky so far- have either been able to catch myself or just fallen against a wall. My balance being off doesn't help. I am resisting a wheelchair. I have to stop frequently to rest and even that doesn't help. This is so frustrating. When do you know it is time for a wheelchair?

My arm is also getting worse. It takes forever to brush my hair- forget anything else above my head- my arms shake uncontrollably. Do wrist braces help with the wrist weakness?

I also have some symptoms not consistant with ALS- mild tremors (though some of what I thought were tremors the PT told me were my muscles shaking from over-excertion). And some autonomic problems (I can't remember the last time I sweated and temp regulation is off- if I start shaking from being cold it takes a long time to stop). If this sounds like anything anyone has heard of that I may have not been tested for please let me know.

The PT told me I have true weakness- to keep doing my stretches but that was all he could offer. I wasn't getting muscle strength back. I feel like he gave up on me. I don't know if he ever contacted my neuro.

Guess I need to let the neuro know what is going on. I think I am too stubborn sometimes. My kids are too young for me to be sick- lol- I know that makes a lot of sense.

Thank you everyone for everything- everyone here is so nice! I think it is true that people with ALS are the nicest people you could ever have the pleasure to meet :)
 

Al

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May 25, 2004
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Reason
PALS
Diagnosis
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Country
CA
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Hi mom. I reread your old posts. So you have seen the neuro and had the tests that were inconclusive. The ALS Clinic really is the place to go. Have you thought of using a walker or Rollator as some are calling them now. I started using one a couple of weeks ago and it really helps. Less tiring to get around and a place to sit and rest when you do get tired. Before that anytime I went anywhere that had a shopping cart i took one whether i needed it or not. It does help having something to hang on to. Hope you get things sorted out soon. AL.
 

ellisa

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Joined
Nov 13, 2006
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Belle Chasse
Mom,
I also have problems now blow drying and fixing my hair now. Can not hold blow dryer long enough to dry hair and have trouble brushing my hair and teeth too. I am almost to the point where I can not hold a brush to fix my daughters hair, but I am fighting that one tooth and nail. The other morning she asked me if she was in trouble because I kept beating her in the back of her head with the brush. Poor little thing went to school with hair looking like a rats nest. I too fought the wheelchair and walker but have had to finally give in because it was so heart wrenching having my 5 year old daughter trying to help her mom try to walk or see me crying because I struggled and still struggling to simply walk to our car. I felt it was not fair to her or my husband so I surcomed to the chair and walker. Stay strong this site is wonderful.

God Bless
Ellisa
 
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