Where to begin

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jennylynne

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Joined
Dec 14, 2005
Messages
2
My Mother was diagnosed with A.L.S. today. She has had trouble walking, and has been tripping for some time now. She is 56 years old. Her Mother was also diagnosed with A.L.S. when she was 56. We are all very scared. My question to anyone listening is this: Where do we even start? Everything is upside down now.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Jennylynne. Sorry you have to be here but there are a lot of good knowledgeable people here. First of all have you registered with the ALS Society Of Ont? The office numbers are on the home page of the ALS.ca site. They will send you a Manual for Living with ALS. There is a lot of information in it for the patient as well as the caregivers. It tells you what you can expect down the road and who to contact for help and assistance.
They will also send your General Practitioner a Manual for caring for the ALS Patient.
I am 56 also and have been diagnosed 2 years now. You will learn to take things a day at a time and always try to look at the positive things. The people here are a friendly bunch and will try to answer all your questions. I don't think Newmarket has a support group but Barrie does and it is run by Pam McFarlin.an ALS patient with familial ALS. Her number is in the contact list under ALS Ont. She is a great lady and you will like her. Feel free to post anytime and ask any questions. We'll try to help. Al.
 

A Daughters Love

Active member
Joined
Oct 8, 2005
Messages
50
Hi jennylynne,

I understand how you feel as my mother was just diagnosed 4 months ago. I agree with Al that the best place to start is the manual. The best thing you can do, is not try to figure out what the future will be like, or what it will bring, as everyone is different. It may take a while, but you will learn to take each day as it comes, and be thankfull for it. I know how hard this is as I to love my mother so very very much ( she is now living with us, so I can help her). I am doing my best to turn this into as possitive a situation as possible, by spending more QUALITY time with my Mom, that I probably wouldn't have if this hadn't happened. Even though my Mom and I have always been very close we are even closer now, and that is the possitive thing I try to focus on. Take care.
 

Jerry Story

Active member
Joined
Jul 18, 2005
Messages
54
[quote:cb5492d398="jennylynne"]My Mother was diagnosed with A.L.S. today. She has had trouble walking, and has been tripping for some time now. She is 56 years old. Her Mother was also diagnosed with A.L.S. when she was 56. We are all very scared. My question to anyone listening is this: Where do we even start? Everything is upside down now.[/quote:cb5492d398]
Read everything I wrote on this discussion website about MSG and aspartame and tell your mother to stay the bleep off MSG and aspartame. That would be a good start.
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hi Jennylynne;

What Al and Michele said is the best advice! Get in contact with the ALS Society and they will help guide you through the system.
This forum is a great spot for advice and opinion(of all sorts), so come back whenever you feel the need to talk.

Cheers and good luck!
 

Cambridge

New member
Joined
Jul 15, 2005
Messages
7
Hi jennylynne,

There are many big hearts here, and much experience that can be passed to help others (you and her). Each person here has undergone his or her own journey and each journey is a unique one.

Some people loose much fast and others slow over years. Your mother must be terrified and seeking much information as she can get.

#1 Tell your mom that each case is different. You cannot compare ALS. There are similar obstacles with ALS patients but what her mom went through may not be the same for her. There is no control for how things happen. We can only be there as much as we can so they don't face it alone!

I myself read "Tales from the Bed" by Jenifer Estess to help bring me up to speed on the topic but it wasn't all that similar to what my mother with ALS and I went through. Again, UNIQUE!

Do what you can while you can, don't just care for her, do things with her. We can't change ALS but we can put things aside to help those we love. The more family she'll have to visit and help out, the more it will help her cope and adapt as we all learn to do.

I do not recommend ALS patients walking on their own, if something happens when nobody around... not good. Walkers and wheelchairs.
My mom fell and whacked her head and got Vertigo in both ears. Imagine feeling nauseous 24/7. It's not worth taking a chance when you can't trust your legs!

When they say 3 letters will change your life, they're not Bullshitting!

Email us anytime
- Ben
 
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