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    • If you know someone that battled ALS, please add them here
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Katie4170

New member
Joined
Mar 26, 2008
Messages
2
Reason
Loved one DX
Country
US
State
CT
City
Manchester
Hi everyone
My mom was a member here. I am not sure what her screen name was. Maybe it was LindaB?
She was an active writer in March - June.
She found out she had ALS in March and sadly died on August 8th.

She had Bulbar onset with 1st symptoms appearing in summer 07.
She was diagnosed with Myasthenia Gravis AND ALS! She went to Columbia Medical center to find this out. All along we thought she had MG. Well she did. She wasn't responding to treatment. It was so confusing. We feared the worst when only symptoms of ALS popped up like double foot drop. So on May 15th she got the dreaded news for good.
She went down hill sooo fast. Soon after she was bed ridden,paralyzed from the trunk down. She was on her side forever after that. B/c of breathing difficulty. My dad carried her to the scooter and ferried her from hospital bed to real bed every night. Then She couldn't speak anymore. I could understand her! LOng after anyone else! :).
She went on high dose pain meds. She was so sleepy she barely came to. This was the last week and 1/2. She never was truly 100% paralyzed. Even hours before her death I told her something that made her lift her head off her pillow and open her eyes and smile! Her last day was wonderful for her and family. She was quite sedated on pain meds and was in end stage breathing. I got all of my brothers her sister....everyone! to come to her. We stayed for hours talking to her,laughing about funny memories and saying goodbyes, Heartbreaking,yes.But I think this was best for her. She died in her sleep during the night.
I love and miss my dear sweet mother. I am young and so was she.
I am so heartbroken now I am grief stricken most days.She was my best friend,partner in crime!
Yet I am glad her time with ALS,as bad as she had it,was quick.
And quick to end. I am a God believing person. I have faith that I will be together with her once again. For me...it iseems so far away. She was supposed to live along side me for many more years!

I don't want to discourage readers with ALS. Understand my mom had MG AND ALS. This is an extremely rare combo. If she has just ALS I believe she would have lived a lot longer. She couldn't be treated for MG. She had NO....and I mean NO life support. no IV,feeding tube,O2,BiPap(we had it she didnt want it),vent etc. My mom wanted out!
Anything to prolong her life,she said when she was mostly well and even stronger when she was sicker,was out of the question. So take hope. There are alot of supportive measures to prolong life. Plus she had bulbar onset which tends to progress faster.This is our story. As you know everyones story is different.

God Bless everyone here. I pray for a cure . God Bless all of the caregivers...for Iknow what my dad has done and it is nothing short of angelic.

Katie McKinney
 

Katie4170

New member
Joined
Mar 26, 2008
Messages
2
Reason
Loved one DX
Country
US
State
CT
City
Manchester
my mom LindaB passed away

see my story in general topics.

Linda barrett was a member here.

7-7-43 to 8-8-08

loved,terribly missed
cherished

KatieMcKinney
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
My deepest sympathies

Katie, thank you so much for sharing your story. Although I am very new to this forum and I didn't know your mom, I feel I must thank you for posting this. I know it must be very hard. My dad was diagnosed one month ago with Bulbar onset and we are all frightened. We're ready to fight with him and be there for him like you and your family were for your mom.

I really am so sorry for your loss. Your family sounds nothing short of inspirational. However heartbreaking your mom's last day must have been she was totally surrounded with love and family and I'm sure that is some sort of comfort to you.

Although her physical body is gone, your mother is still with you and always will be. She will watch over you and visit you in your dreams. She sounds like a spectacular mother and a true hero. You have everything she taught you to guide you through life. I heard someone say, maybe even on this forum, I can't quite remember, but it was something like, "People die but relationships don't." You and your mom's bond will live forever.

Warmest regards,
Thelma
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Katie- I am sorry for your loss. Your Mom was a kind and caring member and we will miss her. My best wishes to both you and your Dad. Cordially, Cindy
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Katie.So sorry to hear this very sad news.Your mum is far away from the suffering of her illness.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Katie. I moved your other post down to here and will merge the posts. I am sorry for your loss.

AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
katie

i am so sorry to hear about your mum,i do remember her.
i will keep you and your family in my prayers tonight.
take care.
caroline
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
Katie,
My sincere sympathy to you and your family. I also hope you find comfort in your memories of your mom before ALS.
Prayers for you,
brenda
 

msde302

Active member
Joined
Jan 5, 2008
Messages
77
Reason
CALS
Country
US
State
MN
City
St. Paul
Katie-

I'm so sorry that you lost your mom. Today is three months since my mom passed away from ALS. Young, like your mom. It's crap for sure. My good friend lost her mom to brain cancer four months ago yesterday. She said to me once, "I bet our moms are together now, back to their energetic creative selves, joyfully watching us every day."

I bet they are. Yours, too.

Kaija
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Katie, I am so sorry to hear about your mother, I remember her here. My prayers and thoughts are with you and your family.

Lydia
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Katie,

I'm so very sorry for your loss. She was a brave woman.

May she rest in peace...
 
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