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JenniLee

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Joined
Mar 19, 2007
Messages
38
Reason
PALS
Country
US
State
CT
City
NORWICH
My hands don't work well, speech just about gone & I walk like Frankenstein. My balance isn't so good, I have to be careful of swallowing certain foods and I have muscle weakness?

Somedays, when the stress of family and spousal problems is too much, I ask God "why not take me now, please?" I feel like I'm useless & wasting away. If I could tell you the animosity among my family and my husband, you would be HORRIFIED!

Then, days like today, I feel a bit motivated and think more positive..."My beautiful 6 year old daughter WILL NOT lose her mother! And I will fight everday and not let itbeat me!"

So friends, there are 2 emotional states and an itemized list of physical difficulties.

In reality, where am I on this ALS road"? Any advice on how to keep going?

Thank you kindly!
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
Hi Jennilee - My mother has MND and had a terrible time of it on Friday and Saturday. I told her that it's not all downhill and there are better days to come, and she should try to remember that. She had a much better day today so the only advice I can give is to take one day at a time (though I know its easy for me to say). I hope your family problems are resolved soon and they'll look after you in the way you deserve :) Take care - Steve
 

mamaoftwo

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Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
Hi Jennilee - I've PM'd you.
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
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New England
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Hi JenniLee.
If I could tell you the animosity among my family and my husband, you would be HORRIFIED!
I am thinking we might not be so surprised. Families come in all varieties and the stress of ALS can add to the mix. Maybe it is time to call your ALS clinic and ask for some support from the social worker there. It is really all about YOU right now so whatever is going on with the family, they need to get a grip and re-channel their focus. JMO. Cindy
 
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KateO

Active member
Joined
Jul 11, 2007
Messages
53
Reason
PALS
Country
US
State
Montana
City
Helena
JenniLee -

I am so sorry to hear about the troubles with your family. I too have horrendous stories about how my own family (siblings & their spouses) are dealing with my ALS.

I'll share with you what worked for me. It may work for you as well. I have decided that all I can do is invite people to enter into the ALS maze. I can't help them navigate their way through it. They are on their own. If they are causing me more harm than good (as in the case with each of my siblings), they are "out". I look at it this way, I'm not losing anything. In fact, I'm really creating space in my heart for others who really do want to help. ..and, it really has turned out that way.

I am a mother to an 11-year old daughter and 14-year old son. Being a mother is what gets me through some days.

All the best.
 

whiskers

New member
Joined
Oct 18, 2007
Messages
3
Reason
PALS
Diagnosis
12/2001
Country
US
State
nj
City
bogota
I Am Having The Exact Same Day As You. Somehow It Helps To Know I Have Company. I Hope This Message Helps You.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Welcome, whiskers. I see by your profile that you've been coping with this disease for a good long while. Glad to have you on board. :)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Whiskers. Glad you decided to join us. It is always nice to have another experienced PAL on board! Cindy
 
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