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anitakissnhug

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Jan 12, 2008
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Loved one DX
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Kentucky
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Stanton
Hello all... still new to this and did my damndest to not come back...lol wishful thinking i guess... My mom was diagnosed 2 years ago... well we were not told until October '07. Its progressing faster than i thought it would... then again i hoped it wouldnt at all. Shes been telling me about her getting charlie horses in her thighs... shes given up her going to curves(which shes done for years) because its too hard on her to continue. I know shes frustrated and pissed... I am as well. When i talk to her i try to be uplifting... and i let her vent... but im scared shitless. I guess im here to rant and vent...
Is that normal ?
Is it normal for her to be having these charlie horses in her thighs... her hands have ecome more difficult for her . Now her legs... She is in wisconsin... i am in kentucky. rather a long haul but we are willing to go up once a month or so to see her and help out however we can.
My sister and my sister in law have been laying guilt trips on me about being so far away... I simply tell then if my husband gets a good job up here we will move. Period.
What right do they have.... ive always been the one there for mom... to help to give to laugh and cry... My dad doesnt say much about it yet... i have to catch him at the right time...he needs to be willing to talk about it... so i respect that. Altho i know its eating at him as well.
I havent been sleeping much this past 2 weeks... too much on my mind... I feel like a zombie and i dont like it... my kids wonder whats goin on with me as well.
Ok im rambling... i feel somewhat better.. but will end this now.. thanks for the vent.
Sandy
 

nspoc

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113
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CALS
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State
Illinois
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Olympia Fields
Hi Anita -

Boy - you said it all! The not sleeping, pressure from the relatives, the terrible worry. From my experience I was at my worst for the first 3 - 6 months - crying all the time. It has been three years and I am much better.

As far as the cramps in the thighs - that was my PALS first symptom ever - so bad she screamed, actually fell down! Our belief is that she was using those muscles to compensate for the foot drop. That symptom went away.

You might want to talk to her/your neuro - Baclofen is often prescribed for cramping, as is Quinine. I hear both work well, but my PALS does not need them. I think pervasive muscle cramping and jerking is a symptom of upper motor neuron involvement. My PALS has very little of that - thus her cramping is minimal, and precedes loss of that function.

As for being far away - my guess is that is as hard on you as it is on the family. My experience is that loved ones frequently get angry at each other - when it is the disease that overwhelms them.

The best thing your mom can do is get as much adaptive equipment as possible before she thinks she needs it. First recommendation - get on www.sammonspreston.com and look for foam tubes. These adapt her silverware, hairbrush, toothbrush, mascara - whatever she has to hold. It allows her to maintain a grip for much longer than would be possible otherwise.

Also - look through the catalog - I bet there are all kinds of things in there that would make her life better.

I also assume she is hooked up with ALSA and/or MDA - they can be very helpful with equipment and recommendations about everything from daily care to finances.

Take a deep breath - we are here for you. You are not a bad person for living far away. Try not to let this terrible disease turn you and your family into something you are not.

Great decision to write to the forum - wonderful people here. Keep up the contact - it sure has been helpful for me!

Good luck! Beth
 
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vmd

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nspoc:

I'm sure it wasn't intentional, but did you happen to see the description of a couple of the links on the page you provided? I only had to read a couple of the ones to know it was pretty disgusting. I wonder why the company would provide these other links? Actually, the top link was the correct one dealing with medical supplies. I don't kow why the other lilnks are listed. Thanks.
 

Vicki S

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Jan 2, 2008
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PALS
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US
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Alabama
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Daphne
Hi, I have cramps in my thighs when I get my knees. I also get cramps in my hands. I'm only on knees when I fall and try to get up. I have to it makes move quicker to get on my feet.

Vicki
 

nspoc

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CALS
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Illinois
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Oops!

Hi VMD -

Thanks for pointing that out - the site is www.sammonspreston.com. No hyphen. The first 2 suggestions in my previous link take you to the right place - strange about the others - maybe David, Al or Cindy can fix or remove the wrong link. Anyway - this is the correct link - I just checked it.


Thanks again - terribly sorry - Beth
 

Icanmanz

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Jul 14, 2007
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947
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PALS
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Uni
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Texas
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Tomball
Hi anita! Hmmmm, don't let your relatives' guilt trips drive you nuts. Let them talk all they want, they'll tire sooner or later. You are not being a bad daughter at all. You are doing all you can. God bless you and your mom.

Irma
 

Peg B

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Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
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US
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Michigan
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Flint
Hi,

I really endorse what Irma said. She said it best so I would just like to stamp it as great advice. She is correct. Best Wishes, Peg
 

CindyM

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I think the link is fixed. Somebody please let me know if not?

And ditto for what Irma says. The relatives are probably speaking from fear and frustration. Sorry they cannot be more supportive of you and each other at a time like this but I hope you find support from friends or someplace. You deserve credit for doing all you do. Cindy
 

anitakissnhug

New member
Joined
Jan 12, 2008
Messages
3
Reason
Loved one DX
Country
US
State
Kentucky
City
Stanton
Thank you all for letting me vent... and for the most part i dont listen the rest go on about what i dont do... my mom knows im here for her whenever she needs me... its just that sometimes it creeps up on ya and bam! knocks you a good one. its nice to know i can come here and get info, ask questions and vent... thank you all .. god bless
Sandy
 
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