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Smoothmom

New member
Joined
Jul 27, 2016
Messages
0
Reason
PALS
Diagnosis
01/2016
Country
US
State
MO
City
Troy
I was my sister's caregiver who had ALS. I am a retired nurse. She died after having it 11/2 years. She passed away Feb. 2!016 and I had been diagnosed with it in January 2016. I denied my symptoms for three months, finally my family had me go to a neurologist . My symptoms were trouble speeching and swallowing. I was first diagnosed with PLS. I was sent to an ALS specialist and he diagnosed ALS due to me also having hyperactive reflexes. I already have a tube. In the last few weeks I have decreased my oral intake mainly using gtube. I had been living with my sister and brother-in-law, but after her death my daughter insisted that I move in with her. My family is a blessing! I really miss eating and I find myself avoiding talking by texting because it takes me a long time to text what I want to say. Grateful for this forum.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,176
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
Sorry to welcome you here and doubly sorry to hear about your sister.

You will not find a better place for support. I have found the folks here to be wonderful beyond measure.

Steve
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,536
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
I am so sorry, but welcome. You could not find a better support group!
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
I am sorry that you have to go through this and right after losing your sis. Welcome and know you will receive a lot of support here.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So sorry to hear of your diagnosis and the loss of your sister. You have found a great support system in PALS and CALS that are on this forum.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,733
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
We're all here for you. If you have an iPad, they have some very good programs test-to-speech. Some of the phrases are already set up and you can type and save other phrases so you don't have to repeat.

I'm so very sorry about your sister.

Nikki is our expert in FALS.
 

BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
629
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
I'm sorry to welcome you and especially sorry about the loss of you sister. There is much support on this forum but I have a feeling since you were your sister's CALS and now you are a PALS, you will be providing a lot of support for others. I pray your progression is slow.

Vince
 

FamilialALS?

Distinguished member
Joined
Aug 24, 2015
Messages
118
Reason
Lost a loved one
Diagnosis
10/2014
Country
US
State
CA
City
Mission Viejo
Sorry to welcome you here, but you have found a great network of support. So sorry to hear about your sister. Both my mom and her sister passed away from ALS. My aunt was limb onset and my mom was bulbar onset. You'll find lots of tips on peg feeding and speech devices by searching the forum or just posting a question.
 
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