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Nov 16, 2008
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Reason
Loved one DX
Country
CA
State
Ontario
City
Peterborough
Hi Im new at this but Im told that this is the place to be.
I Myself do not have ALS, but my mother does, she was diagnosed with this terrible disease here at home at the end of August.
It has since been decided that she has the Bulbar AlS
She is losing the ability to talk, swallow, walk etc.
Every day there is something she can't do. We did get to go to the ALS clinic at the Sunnybrook hostipal and since she has just been put on the drug Retuzil which Im hoping will slow this disease down.
Im really having a hard time with this, I can't believe a sweet woman like this, that would do anything for anyone would end up with such a terrible disease.
My heart goes out to her each day I see her and my father.
I will be using this support group for sure.
Mary:-(
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Mary, welcome. I'm so sorry your mom has been diagnosed with ALS. The drug should help slow the progression down ... I'm glad they started it right away. Also, make sure she gets enough nutrition ... it's important for her not to lose weight, even though it's hard to eat with bulbar symptoms.

Your dad is going to need your support as much as your mother does ... but please remember to take care of yourself, too.

Blessings to all of you ...
 

CindyM

Moderator emeritus
Joined
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Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Mary and welcome to the forum although I am sorry to hear about your Mother. Folks around here are great-they will reach out to help with any issue or questions. Glad you decided to join us! Cindy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome Mary. I go to Sunnybrook as well. Great bunch of people there. Good bunch here too. Use the FAQ or search features above or just ask if you can't find what you need.

AL
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Diagnosis
0/0000
Country
UK
City
London
Mary Hi I'm sorry to hear about your Mum. It's so difficult and really painful to watch someone you care about deteriorate with ALS. You've definitely come to the right place there's such a lot of help here. You may need to look at communication aides like Light-writers. My Dad has Bulbar Symptoms and support from the Speech Therapist has been so valuable.
I hope you get good support.
Donna
 

[email protected]

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Joined
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Messages
4
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Loved one DX
Country
CA
State
Ontario
City
Peterborough
ALS Society Support

I have met a wonderful woman at the ALS Society. "Suzanne" was here on the weekend and visited my mom, brough the ALS manual with her. She spoke with my father, sister & brother about her disease and what to expect. She even had a conversation with mom about any questions she might have...I don't think mom was aware how fast this disease had progressed.
She has even gone to the step of calling the CCAC here and discussed what she thought that my mom required at this time. An OT came to the house (we have been waiting since Sept for this) and things are falling in place.
My family is Italian and very close. She does understand english well but can't communicate back as to understand her.
The family is working on getting her a communiction system where it is pre populated with saying that she says so all she has to do is go to the area and touch the screen and it speaks for her.
Tomorrow will be another day, they seem to go so fast ...
Mary
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Suzanne is the greatest. She took me sailing in Sept. Not easy for a guy in a power chair. She figured out a way though. Glad she could help.

AL.
 

[email protected]

New member
Joined
Nov 16, 2008
Messages
4
Reason
Loved one DX
Country
CA
State
Ontario
City
Peterborough
sailing

I think that she mentioned taking someone out sailing for 5 hrs last yr.
Good for you, she said she had fun!
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
Ciao!

Mary, I am so sorry that about your mother's diagnosis. I know exactly what you are going through. My dad was also diagnosed with Bulbar onset in August and we are also Italian (although he speaks perfect English.)

Beth gave you the best advice which is making sure your mom does not lose any weight and make sure she gets plenty of Omega 3 fatty acids. It seems that good fats are the best nutrition in slowing the progression. Also avoiding gluten, sugar and anything with MSG has helped my dad a lot. He sees a speech therapist and is doing okay with that but he has some difficulty articulating and he has difficulty swallowing his food.

I know how hard this is especially as you say when it is happening to someone so good and kind. It's totally unfair. I really knew so little about ALS back in August and no one in my family ever suspected my dad had anything serious so the diagnosis really came out of left field for us. Now that the shock has worn off somewhat we are coping as best we can. Please tell your mom she is not alone! If there is one thing I have learned it's that people with ALS and their caretakers are truly incredible people. This disease is a true test of human courage and the support network is a true measure of compassion and human goodness. Hang in there!
 

dsiple

Active member
Joined
Nov 14, 2008
Messages
80
Reason
PALS
Diagnosis
12/2003
Country
US
State
pa
City
Punxsutawney
Welcome--I think

So sorry that you had to find us, but since you are here, welcome and I think you will find that you have came to the right place and you will get all the support you need and then some.

hang tough and stay positive
Duane :-D
 
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