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Lorie

Senior member
Joined
May 17, 2007
Messages
546
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Loved one DX
Country
Uni
State
Alabama
City
Mobile
TIM AND I. OH! BOY! LAST WEEK I SPENT FOUR DAYS WITH TIM AT THE HOSPITAL. HE WAS HAVING TROUBLE BREATHING AND WAS FULL OF CONGESTION. (HE HAS ALL THE MACHINES MY FAMILY WASN’T GIVING THEM TO HIM, SOME OF IT WAS HIS FAULT. HE WOULDN’T DO THEM). THE HOSPITAL GAVE HIM BREATHING TREATMENTS AND KEPT HIM TO MAKE SURE HE DIDN’T GET PNEUMONIA. I DID GET THEM TO GIVE HIM THE FLU AND PNEUMONIA SHOTS WHILE HE AS THERE. THE DOC. WOULDN’T GIVE THEM TO HIM TO WEEKS BEFORE BECAUSE HE WAS RUNNING A TEMP. THAT IS BETTER. HIS LEGS ARE WEAKER. WHEN I WENT TO TAKE HIM TO THE DOC. ON THURSDAY. WE HAD TO PUSH AND PULL ON HIM LIKE A PIECE OF MEAT. IT WAS HORRIBLE. I AM PRAYING BY THE GRACE OF GOD THAT WE CAN GET A REASONABLE VAN FOR HIM. WE CAN’T CONTINUE LIKE THIS. I ALSO AM GETTING HIM A HOYER LIFT THAT SHOULD HAVE ALREADY BEEN DELIVERED. AND OTHER EQUIPMENT.

AS FAR AS ME, I HAVE BEEN HAVING CHRONIC PROBLEMS WITH MY EARS (DISEASE). AND HAVING THE TWITCHES AND CRAMPS LIKE TIM IN THE BEGINNING. I HAVE TO SAY I AM ALSO FIGHTING SOME DEPRESSION. I HAVE BEEN ON TWO ANTI- DEPRESSANTS FOR A WHILE. BUT, I CONTINUE SOMEHOW TO GET THE STRENGTH I NEED. SOMEONE IS CARRYING ME RIGHT NOW. (GOD). THAT’S WHY YOU HAVEN’T HEARD FROM ME. A LOT IS GOING ON. I THINK OF YOU ALL EVERYDAY THOUGH. . I ADMIRE YOU ALL MUCH!

LORIE

"Footprints in the Sand"- MY FAVORITE

One night a man had a dream. He dreamed he was
walking along the beach with the Lord. Across the
sky flashed scenes from his life. For each scene, he
noticed two sets of footprints in the sand: one
belonging to him, and the other to the Lord. When
the last scene of his life flashed before him, he
looked back at the footprints in the sand. He
noticed that many times along the path of his life
there was only one set of footprints. He also noticed
that it happened at the very lowest and saddest
times in his life. This really bothered him and he
questioned the Lord about it. "Lord, You said that
once I decided to follow you, You'd walk with me all
the way. But I have noticed that during the most
troublesome times in my life, there is only one set
of footprints. I don't understand why when I needed
you most you would leave me." The Lord replied,
"My son, My precious child, I love you and I would
never leave you. During your times of trial and
suffering, when you see only one set of footprints, it
was then that I Carried You."
 

CindyM

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Lorie- you read my mind. been thinking of you. Hope Tim improves and can come home soon. Cindy
 

brooksea

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Messages
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Hi Lorie,

Sorry y'all are having such a difficult time. Hope your brother's breathing is improving.

Hang in there and take care of yourself!
 

redneck charger

Active member
Joined
Nov 29, 2007
Messages
99
Reason
Loved one DX
Diagnosis
05/2005
Country
CA
State
Ont
City
Carleton Place
Hi Lorie..
I hope you are getting the rest you need..and are feeling better..and Hope Tim's breathing is getting better.. God Bless..
 

AngelManFL

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
Country
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FL
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Lorie, you sound like a woman of amazing strength and determination, I'll keep you and your brother in my prayers.
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Thank you!

Thank you, Cindy, CJ, Redneck Charger and Angel Man. (A Redneck in CA ?)

Thank you all for your support. I don't know from one day to the next anymore. I just don't know how I do it. And Advocate for ALS!

That's why I Love Foot Prints.

Timothy is getting his breathing treatments more often. He is a little better with that. I am so scared and my heart is in so much pain. with him loosing the strength of his legs now, I know what's coming. And I hope and pray I make it through it for the both of us.

Timothy went to the floor this morning when my brother got him up to use the potty.
A Hoyer Lift was suppose to be delivered a week ago friday after I took Tim home from the Hospital. Well, it never came. So I called the Health Care Agency that I am using to find out why it has not been delivered. (Now I am Venting). The Nurse got on the phone. I asked why it had not been deliverd? It had been ordered and we haven't seen it. She had the nerve to ask my How did I think I knew more about what was going on then she did, that there may not have even been a Prescription written for it. I told here. I was the one that had the Doctor give their Therapist a Prescription for it. She said: Let me look in the file. There may not be one. I said ok, you look. (I was so Humiliated) I gave her time. She said, Oh, here it is. I need to call and check on that. I told her: I said let me tell you one D___ thing, I know everything that is going on with my brother. Because I am the one doing it. I told you people in the beginning three weeks ago, that I take care of Timothy's needs. I said: Don't you ever make a statement to me like you did when I called. I said if you people can't help Timothy with what he needs. I will find somebody that can. And I did not appreciate her attitude. And if she as going to be his Nurse, I wanted somebody else. She said: Give me a phone number where I can call you about the lift. I said: I have a number for you. Listen to this Mam. I hung up on her! The next thing I know, the Medical supply Co. was calling me to tell me they were delivering the lift, Now! I get so sick of dealing with people that do not understand this Disease and act like people are a number. I want the best for Timothy and I will not accept nothing less.

Thank you, I feel a little better now.

You all are so wonderful. Only the ones in our World knows what this Disease does to us!

You are Awsome! Pray I keep going. I have so much to accomplish. Not only for Timothy, but all PALS! and CALS!

Love,

Lorie:-D
 

redneck charger

Active member
Joined
Nov 29, 2007
Messages
99
Reason
Loved one DX
Diagnosis
05/2005
Country
CA
State
Ont
City
Carleton Place
Yes Lorie a redneck in Canada.. Live in a little hamlet outside Ottawa.. Out in nowhere..

I know exactly how you feel about providers with this disease.. The one I hate is be patient.. Well I always say I don't have time to be patient.. Because this disease changes so fast.. Mom always says when someone asks her how she is doing.. "Yesterday was a better day" I cannot even inmangine what that feels like.. We are with you.. But are all feeling different things in this disease.. because not one our relatives.. or friends or ourselves are feeling the same..and that too is very frustrating..:?
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
[ get so sick of dealing with people that do not understand this Disease and act like people are a number.


My turn :D. We have the most ignorant, arrogant neurologist :evil:

I asked him to do a test for Lyme disease (which he did, after scoffing) and recently asked him to do a test for MG. He huffed and said we were being sidetracked, and that I can't keep asking me about different diagnoses every time I see him, and that he was sure that he ran that test. He looked through his file and he hadn't. :evil:

Shouldn't tests for MG and Lyme be done without having to be requested?

He wouldn't even extend the courtesy of looking at the research on Lithium that I printed off from here. He's exceptionally patronising, as if I'm in denial and can't accept the fact that my mother has MND. I'm willing to accept that she does but whats wrong with assuming she has MND while checking other avenues? He asked for palliative care four weeks ago, they didn't reply to him, so he 'assumed' everything was ok, and that they were in contact with us. I could cheerfully strangle him. We have to push them on everything or nothing would ever be done.

We'd be lost without the internet, especially everyone here, you're always my first stop:)

I feel so much better after that :D

Take care all, and don't let the b******* get you down :)

Steve
 

CindyM

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We are with you as much as possible, Steve. I do wish you had a more sensitive neuro, though. Cindy
 

brooksea

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Lorie: YOU GO GIRL! As usual you rock and tell it like it is!

Steve: PALEEEZE! I could picture you "cheerfully" strangling the neuro in a dignified stiff upper lip sort of way!

Y'all hang in there! Sometimes a dose of comedy thrown at people in charge brings them down a notch...my husband does it every single time he goes to the clinic! Then they think twice about being so hoity toity!
 

sherry0459

Active member
Joined
May 6, 2007
Messages
62
Diagnosis
03/2007
Country
US
State
Alabama
City
Jacksonville
Hey Lori, I have been thinking and praying about you and Tim. Let 'em have it. It is like the phone calls I get. The person on the other end makes fun of my voice, I just want to reach thur the phone and pull their tongue out, tie it in three knots and see how it feels. I agree with redneck Charger, but I would give them a stiff upper cut. LOVE YA, sherry
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
We are with you as much as possible, Steve. I do wish you had a more sensitive neuro, though. Cindy

Thanks Cindy, its much appreciated. Sometimes its good to get some venom out :twisted:
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
Steve: PALEEEZE! I could picture you "cheerfully" strangling the neuro in a dignified stiff upper lip sort of way!

The British stiff upper lip you mean? It would be the politest strangulation ever,,,,

'Sorry to have to strangle you, old bean, but you've been something of a rotter.I'm sure you understand' ;)
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Update Again/tim

Tim is in the ICU at the Hospital. He stopped breathing and almost died. (i will explain later, it could have been prevented). He is better today than yesterday. I will keep yall informed!

Love,

Lorie

May God Bless Us ALL!:(
 
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