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mimi0727

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Joined
Dec 30, 2008
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Learn about ALS
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US
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PA
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Reading
Hi all,

I read so many queries on here about twitches/fasiculations and although I've experienced them for over a year and they can be disconcerting or uncomfortable,frankly, they are the least of my problems. The weakness, loss of function, mobility and independence and atrophy are much harder to deal with. My shoulder started wasting first, it is now very visible through clothing.The left shoulder angles down from the neck with the shoulder rolling forward and now the arm has rotated and there is muscle loss on my back at the shoulder and arm pit area. My left hand was next and is now flat with sunken in areas between thumb and index finger, base of thumb and palm.The thumb is now at a strange angle.Fine coordination and pincher grasp are difficult.I practice picking up buttons, coins, cheerios and pick-up sticks to work on dexterity.My left foot now has sunken in between between big and 2nd toe, base of all toes, tendons stand out and heel. The sole of my foot looks like it was scooped out.Limited ankle movement and big toe, cannot spread or curl other 4 toes. I'm sure this is what effects my balance. Any recommendations for braces, supports, aids, or supplements to help with the cramping of foot and hand? I am using a cane presently, the chiro recommended a walker because of loss of balance, but I found it harder on my left shoulder, any suggestions? My next neuro visit is Feb. 9th and I plan to ask for PT or OT. As always, thank you for any suggestions.
Blessings,
mimi
 
I'm on my way out the door, but has a doctor mentioned a possible diagnosis?
 
mimi,

I can totally relate to what you are saying about the atrophy / weakness. This for me has been absolutely the worst part of my symptoms. Just the other day my boss was complaining during our workout that I wasn't 'pushing it enough, and I finally had to tell him that I had 'something' going on with me and I am getting it checked out in a few weeks when I get home. I am finding that my workout strength is going down in a slow steady way when it should be going up.

Then to top it all off I was looking at my arms and my affected arm has at least an inch less on it around my forearm and bicep and I have a big dent near my elbow. This is all on my affected / dominant arm. I also have the 'flat hand' on my affected side, arghhhh!

Sorry I don't mean to hijack your thread I guess I was just reading it and felt I could relate and venting sure does feel good right now. :p

Has your neuro suggested a diagnosis? I pray that you will be able to get some help. I am sure that they will have some suggestions at your appt for aids to help with walking etc.

Good Luck
11B
 
Just wanted to say sorry again mimi, I sound like such a whiner :cry:
 
Hey, 11B, if anyone on this forum is a whiner, it sure isn't you ! Glad you have found a place where you can honestly vent ... if we can't speak the truth to each other, we're really in deep doo-doo ...

Mimi ... I know there have been good discussions about braces and supports. Try the Search feature with "braces" ...

Take care, both of you!
 
Hi mimi. If you got a walker with 2 separate arms you could lower one side to take pressure off the bad side but still have 2 handles to grip for balance.

AL.
 
Mimi

Baclofen or Tizanidine for the cramping
 
Thank you for all the responses.

Beth-Thanks for helping navigate around the site.
Al-we are going to check out your recommendation on Tuesday
Strikeout- no diagnosed yet, in process of elimination,hopeful for diagnosed soon
Tall John- thank you,will ask dr. for rx at next visit
11Bravo-you're no whiner,great to hear from you! I totally relate to the limitations and adjustments to physical activity. Our youngest son is the one who just enlisted for Marines. He and my husband are starting kettle bell work-outs at a local gym this week, last year at this time I would have been right with them. The 3 of us used to go golfing together all the time. Some people have dreams of flying and wake up appy, my best dreams are of golfing and I execute a beautiful, strong drive and can hear the exquisite sound of hitting the "sweet spot" I love those dreams!

I read this last night and my first thought was of everyone at this site...
"Life is mostly froth and bubble"

Life is mostly froth and bubble,
Two things stand like stone,
Kindness in another's trouble,
Courage in your own.

Adam Lindsay Gordon

Thanks for standing like stones.
Blessings,
mimi
 
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