Re: I can't believe I did this !

[Guest guest]

Hi this is June and my husband has PLS and I know it must be soooooooooo hard

on all of you. Cause it is sooooooo hard on us too. My husband use to do

all the things I am attempting to do and I know he is so aggravated that he

can't help me too so Jeannie we can relate to your e-mail. We both get so

frustrated tooo so just know that we are all here for each other. Love June

[Guest guest]

Dear Jeannie,

It is normal to get so frustrated. I hope so because I sure do! Your story

was very descriptive and it would have felt good to me too to throw that

darn thing a few yards down. It is so hard not to be able to feel helpful

like our old selves.I feel for you. I have thrown my cane here and there and

scowled at my walker and w/c.You have the right thing there with that

aluminum walker-it sounded like a good stress buster. I am sorry that you

felt this way but i hope tommorrow will be better!!! N.

I can't believe I did this !

> Hey Group,

>

> It's been alittle stressful here this week, my 80 year old Dad

> had to have gallbladder removal surgery on Friday. He's doing

> good. My husband's oldest sister has been in a nursing home for

> some time now, but her health is going downhill. I see my husband

> trying to do things outside, that I used to do or at least help him

> do. Now I'm unable because of this stupid, stupid disease PLS. This

> past week we were outside in the driveway, it's a long driveway and

> wide at the bottom end. My grandaughter was not listening to what I

> was telling her not to do (a common trait of 12 year olds Ihear). I

> was getting frustrated with her and at PLS not allowing me to do the

> things I used to do. My husband was putting chemicals in the pool

> (which used to be my job), I asked him where he was at with the list

> of things he was doing, he took it the wrong way and snapped at me,

> thinking I was questioning his ability to do it. Well, low and

> behold, I was so frustrated at this point, I reacted in a way that

> was so unlike me, I am still in shock over it, my husband was over

> by the pool, I was standing in the middle of this wide driveway and

> thank God my grandaughter had gone back inside the house. I got so

> angry at this stupid disease that won't let me walk away quickly ,

> even with my old walker that I use for out in the yard, it is the

> type with no wheels, for a split second I felt like I was facing

> this PLS face to face...I picked up my walker and threw it down the

> driveway,like I had all the intentions of walking normally away from

> it. For that split second, I felt great, like I had beaten it, then

> I began to rock like a rocking chair standing there in a wide open

> space with nothing to grab onto in sight...then down I go landing

> squarely on me butt on the blacktop...it was a hard landing, good

> thing I have lots of padding back there!! Thank God I was alright

> and didn't break anything. I have never thrown anything in my

> life, my husband was shocked to see me do this, he said he's known

> me for 37 years and never seen me do anything like that before. I

> was just as surprised myself, it was a stupid thing to do, to put

> myself in such a vulnerable position over that asphalt like that.

> But now that the shock is starting to wear off and I think back

> about it, there is alittle part of me that thinks I took the PLS by

> surprise too! You know when you get tired of dragging those walking

> aids around with you all the time, I do appreciate having them so I

> can get around, but sometimes they are cumbersome, I don't know if

> I am making sense here or not. Well, we cried and laughed about it

> afterward. Also, this week I went to be fitted for my wheelchair

> for long distances, the place was very nice and professional and it

> is on order, but the whole time I felt like I was picking out my

> casket or something. Thanks for listening to my ramblings. God

> Bless....Jeannie/N.J.

>

>

>

>

>

>

[Guest guest]

Hey There Jeanie

Guess what? you are allowed to be angry.

And count your blessings that you can throw. lol

I have this recurring dream that someone is harming me and when I try

to raise my arms to fight back...they won't move. That's when I wake

up. Funny thing is I've had this dream long before I was diagnosed

with neurological issues.

So wild as it may seem, throwing is a blessing...but cracking a

tailbone is NOT.

Hang in There

Eva in WV

[Guest guest]

Hi Jeannie:

Am glad we could be here for you to share how you are feeling. Believe

me, I have seen a side of me that I would never have shown before my getting

PLS but then I remember that if I had my choice I would never be this

emotional.

You are not alone in this. Hopefully things are better for you today and

that your stress will diminish.

Jo.

I can't believe I did this !

> Hey Group,

>

> It's been alittle stressful here this week, my 80 year old Dad

> had to have gallbladder removal surgery on Friday. He's doing

> good. My husband's oldest sister has been in a nursing home for

> some time now, but her health is going downhill. I see my husband

> trying to do things outside, that I used to do or at least help him

> do. Now I'm unable because of this stupid, stupid disease PLS. This

> past week we were outside in the driveway, it's a long driveway and

> wide at the bottom end. My grandaughter was not listening to what I

> was telling her not to do (a common trait of 12 year olds Ihear). I

> was getting frustrated with her and at PLS not allowing me to do the

> things I used to do. My husband was putting chemicals in the pool

> (which used to be my job), I asked him where he was at with the list

> of things he was doing, he took it the wrong way and snapped at me,

> thinking I was questioning his ability to do it. Well, low and

> behold, I was so frustrated at this point, I reacted in a way that

> was so unlike me, I am still in shock over it, my husband was over

> by the pool, I was standing in the middle of this wide driveway and

> thank God my grandaughter had gone back inside the house. I got so

> angry at this stupid disease that won't let me walk away quickly ,

> even with my old walker that I use for out in the yard, it is the

> type with no wheels, for a split second I felt like I was facing

> this PLS face to face...I picked up my walker and threw it down the

> driveway,like I had all the intentions of walking normally away from

> it. For that split second, I felt great, like I had beaten it, then

> I began to rock like a rocking chair standing there in a wide open

> space with nothing to grab onto in sight...then down I go landing

> squarely on me butt on the blacktop...it was a hard landing, good

> thing I have lots of padding back there!! Thank God I was alright

> and didn't break anything. I have never thrown anything in my

> life, my husband was shocked to see me do this, he said he's known

> me for 37 years and never seen me do anything like that before. I

> was just as surprised myself, it was a stupid thing to do, to put

> myself in such a vulnerable position over that asphalt like that.

> But now that the shock is starting to wear off and I think back

> about it, there is alittle part of me that thinks I took the PLS by

> surprise too! You know when you get tired of dragging those walking

> aids around with you all the time, I do appreciate having them so I

> can get around, but sometimes they are cumbersome, I don't know if

> I am making sense here or not. Well, we cried and laughed about it

> afterward. Also, this week I went to be fitted for my wheelchair

> for long distances, the place was very nice and professional and it

> is on order, but the whole time I felt like I was picking out my

> casket or something. Thanks for listening to my ramblings. God

> Bless....Jeannie/N.J.

>

>

>

>

>

>

[Guest guest]

Jeannie, I think this disease causes sporatic feeling's of loss.

Going to a wheelchair probably added to the fury you were feeling.

It's no fun to loose your independence, but the furture is looking

brighter for us - with the research.

I felt more independent when I got my wheel chair, I hope you will

too. I go where ever I want to now and I feel safer when I'm out

alone (no fear of falling).

I hope thing will get better for you soon.

Donna - PLS'er

> Hey Group,

>

> It's been alittle stressful here this week, my 80 year old

Dad

> had to have gallbladder removal surgery on Friday. He's doing

> good. My husband's oldest sister has been in a nursing home for

> some time now, but her health is going downhill. I see my husband

> trying to do things outside, that I used to do or at least help him

> do. Now I'm unable because of this stupid, stupid disease PLS.

This

> past week we were outside in the driveway, it's a long driveway and

> wide at the bottom end. My grandaughter was not listening to what

I

> was telling her not to do (a common trait of 12 year olds Ihear).

I

> was getting frustrated with her and at PLS not allowing me to do

the

> things I used to do. My husband was putting chemicals in the pool

> (which used to be my job), I asked him where he was at with the

list

> of things he was doing, he took it the wrong way and snapped at me,

> thinking I was questioning his ability to do it. Well, low and

> behold, I was so frustrated at this point, I reacted in a way that

> was so unlike me, I am still in shock over it, my husband was over

> by the pool, I was standing in the middle of this wide driveway and

> thank God my grandaughter had gone back inside the house. I got so

> angry at this stupid disease that won't let me walk away quickly ,

> even with my old walker that I use for out in the yard, it is the

> type with no wheels, for a split second I felt like I was facing

> this PLS face to face...I picked up my walker and threw it down the

> driveway,like I had all the intentions of walking normally away

from

> it. For that split second, I felt great, like I had beaten it, then

> I began to rock like a rocking chair standing there in a wide open

> space with nothing to grab onto in sight...then down I go landing

> squarely on me butt on the blacktop...it was a hard landing, good

> thing I have lots of padding back there!! Thank God I was alright

> and didn't break anything. I have never thrown anything in my

> life, my husband was shocked to see me do this, he said he's known

> me for 37 years and never seen me do anything like that before. I

> was just as surprised myself, it was a stupid thing to do, to put

> myself in such a vulnerable position over that asphalt like that.

> But now that the shock is starting to wear off and I think back

> about it, there is alittle part of me that thinks I took the PLS by

> surprise too! You know when you get tired of dragging those

walking

> aids around with you all the time, I do appreciate having them so I

> can get around, but sometimes they are cumbersome, I don't know if

> I am making sense here or not. Well, we cried and laughed about it

> afterward. Also, this week I went to be fitted for my wheelchair

> for long distances, the place was very nice and professional and it

> is on order, but the whole time I felt like I was picking out my

> casket or something. Thanks for listening to my ramblings. God

> Bless....Jeannie/N.J.