not totally glad to meet y'all

[Mediasmart]

Don't listen to Max...he is always right. The point being question everything. Don't assume. Ask. You might spend more time than you like getting to the root of all things. But you will never get past the initial diagnosis unless you get the entire scope of things in your brain.

We are here to help.

 

[MaxEidswick]

>Don't listen to Max...he is always right

oh gawd -- at least 1/2 of that makes sense !

 

[zoohouse]

Pecas, sorry to hear that you too have had to hear the "you have ALS" sentence. There sure seems to be a lot of Texans here, my husband included. He had to stop wearing his boots fairly quickly as his foot would roll inward and we couldn't get them on. Keep brave, and don't bother trying to run from this I tried, but my body kept following me, and I am not the one with ALS. There truly are a lot of amazing people on this forum, and before you know it you have a whole other family. A family full of gimps, but with incredible spirit.

Paulette

 

[pecas]

I don't know if y'all jinxed me, but I wore my boots to the mall yesterday and they felt like lead weights. Of course, the mall makes me crazy anyway, but with a tween, you do what you have to do!

Thanks again for the very kind welcome. I find myself saying "someone in the ASL Forum said" way too often. I know that's going to get annoying real fast.

 

[Santa joe]

I always speak of my forum family with so much pride and love. My immediate family has started asking about y'all. We share so much and understand one another because we are all dealing with this monster called ALS. Hugs to everyone!

Debbie

 

[Flashdance]

Welcome, pecas. I'm pretty new here-diagnosed in March and joined the Forum in June. Haven't posted in awhile, have found this whole ALS thing to be a full time job. It's overwhelming to deal with all the new legal/financial/daily living tasks as one's stamina and body parts start to fail.

I have found so much help here as both PALS and CALS so generously share their experiences and advice. It was kind of shocking at first, but now I love the directness and detail in discussing stuff like mucus and poop. Other people might regard these things as way too personal or downright inappropriate for public sharing, but these are the things we PALS/CALS really struggle with. And we don't have time to waste trying to be discreet.

I thank all of you who have posted the details (photos, links and reviews) on bidet toilet seats! My bathroom remodel DID get done and I still have some arm & hand function left. But thanks to your help, I will be ready! Well, probably not emotionally ready, but the bidet is in place. And let me say I was afraid of it at first. It looks like it belongs on a space ship. But we are getting acquainted.....

Anyway, pecas, it's good to meet you. I'm grateful none of us has to be alone on this horrifying journey.
And I, too, often say "I learned that from the Forum" or "Everybody on the Forum says..."!

 

[dldred]

Pecas, sorry you have to be here but you will find great advice and wonderful friends here. Some of us have a strange sense of humor so please don't take offense to it. Please don't be afraid to ask questions, when my mom was diagnosed, I was afraid I was driving people crazy with all of my questions. But they never complained all have always been here for me and I hope I can return the favor.

Dana

 

[nebrhahe53]

pecas do you know about the als support groups that meet once per month at local churches?

 

[pecas]

Yes, my neuro gave me an ALSA folder and there was a handout. I have it on my schedule. Do you attend? I was thinking, statistically there should be about 36 of us in the Austin metro area. Depressing. But at least I know I have some sort of local cohort.

 

[nebrhahe53]

I was planning to attend the get together at the allandale church-forgot exactly when that was

 

[pecas]

4th Tuesday of the month, 12:30 - 2:30, light lunch provided. If you come, you have to wear a red rose or something so I'll know who you are. Please come!

 

[nebrhahe53]

I'll be there-I'll wear something you can recognize, or I can always ask for Pecas

 

[pecas]

Excellent!

 

[affected]

I love this family!

You all 'get it'.

We laugh, cry and problem solve together and I value every one of you.

I usually say, well a friend said ...

 

[pecas]

The ALS clinic that my neuro sent me to finally called and the first appointment is 3 months out (Oct 29). The doc would only take an appointment on Wednesdays. It seems so cruel to make us wait that long to access the associated services, PT, OT, social worker, etc. But she said we can't interact with them until after the doctor's appointment. Pretty bummed out right now. Who knows where I'll be in 3 months? Feeling adrift. Well, except for y'all.