New to group

[pastor]

Good afternoon
I am new to this forum. I had 2 Aunt pass away due to ALS. One bulbar one limb. They passed 3years apart. NOW my mom is currently going through the testing waiting for diagnosis. On Sept 24th she will see the neuro for the results.

We are going through the motions but we already know she has bulbar onset and has been presenting sympoms for over a year. Now her words are rarely understandable. She is drooling and having difficulty with chewing and swallowing.
I was caregiver for one of my aunts who traveled this same path. This is a horrific disease. I have tried not to be angry. But I am. My mother is the kindest person I have ever known. In all my life I have never heard her say a harsh word about anyone. Never heard her raise her voice. Never even heard her use a cuss word. How and why could this happen.

The thought of her having to suffer with this monster is heart shattering to me. I would rather the Lord spare her and allow her to take her rest.

Im sorry. Done venting. Just need a safe place to say the things I cant say anywhere else.

 

[Nikki J]

I am very sorry. It isn't fair. It is cruel beyond comprehension. I had the same feeling when my mother had it and she, like your mom, was the sweetest kindest lady you could know. FALS is incomprehensible and relentless I lost 2 aunts like you and also lost an uncle and now my sister and I have it.
Please consider posting in the caregivers section as well. You might also consider the Familial ALS/ MND group on facebook

 

[dalvin]

Welcome, vent all you want. We understand

 

[skipper66]

Welcome but so sorry to hear that you need to be here. You have alot on your plate. Feel free to vent all you want on here. We care and will do our best to support you.

 

[LaurieCALS]

Hello Pastor, and welcome! You'll find wonderful people here.

When my PALS was diagnosed, I thought he might want to end it all. But he never did. He simply wanted everyday he could have. He stopped worrying about things he could no longer control. His world simply narrowed but he was always willing to stay. I think this is most often how people handle it.

I'm glad your mom has a good son to be there for her.

 

[affected]

Welcome to our elite group pastor.

I honestly cannot imagine your situation. After experiencing bulbar onset with my husband, how you FALS bear it is beyond me. That's where this site becomes so important. Nikki has shown us strength beyond measure and she has other contacts with FALS to help as well.

Your anger is valid, you have to face something so huge, and there will be lots more emotions as you take your mother through the diagnostic process. Try to somehow stay tuned to where she is at so you can support her. Then come here or to other supports you may have to work through your own feelings.

hugs

 

[MaxEidswick]

welcome and sorry to have to see you here. ALS sucks -- think FALS is the only thing worse.

however, IIWII ("It Is What It Is!") ... so we will make due. today at least.



-----
Max - Tuesday, September 16, 2014 6:11:00 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Janie H]

Welcome pastor, so sorry for your mom, you are in my prayers.

Janie

 

[pastor]

Thank you Tillie. This was very helpful

 

[JimInVA]

pastor,

I'm sorry you are here, but glad that you have found us. We all feel the entire gamut of emotions, whether PALS or CALS. I can certainly attest to the empathy and compassion of those here... their willingness to listen, share and care can help move you away from that feeling of being entirely alone in this. My thoughts are with you...

Jim

 

[pastor]

Thank you sir

 

[TGB1]

So sorry you are traveling down this road again, now with your beloved mother. My mom (87) is also bulbar onset. Some days I can't do anything but put one foot in front of the other, and hope I don't fall down. I wish you strength.

Trina

 

[cheerleader]

Pastor, we grieve with you. No one should have to do this twice! You can cry and despair all you want here, as we surely understand it. Donna

 

[nebrhahe53]

We undrstand

 

[pastor]

Each day I am coping with my moms diagnosis better. Some moments better than others. It's make me sad to listen to her struggling to speak and swallow.

Being a part of this group and reading the posts and seeing the courage and patience that you all walk through life with is a great inspiration.

Live!