New member

[poet1973]

Hello! I am new to the forum. I was diagnosed 02/2022. Just wanted to come and say hello and that it's nice to be able to have a platform to come and speak to others who understand what I'm going through

 

[Tomswife]

Poet1973. The CALS and PALS here will walk with you. The search function works very well and you can do keyword searches and find relevant discussions.
How are you doing since your dx a year ago?

 

[affected]

Welcome poet, sorry you are here, but it's the best place to be for support.

 

[poet1973]

I have my good and bad days. I have lost use of my dominant arm. Having weakness in my legs. Taking radacava ors and riluzole tudca sodium butyrate. Trying to get on relyvrio.

 

[Clearwater AL]

Poet, maybe you might share with us when, who and where were you diagnosed.
It helps us further help you in the future if you should consider a second opinion
(if you did) which many do. I see you were diagnosed last year. Hopefully it was
a designated ALS facility. The more we know the more we can help. I'm always
reluctant to say "Welcome" but glad you found us. Welcome to to this? (ALS) But...

 

[lgelb]

Welcome, poet, while sorry you are here. Let us know how we can help.

 

[MupstateNY]

Hello poet, I hope you find the forum as helpful as I do.

I've learned to wipe myself with my nondominant hand but I can't get the hang of hand sewing or eating with my non-dominant hand. How about you?

 

[poet1973]

Clearwater AL
I was diagnosed in February 2022. At Semmes murphey in Memphis TN. Dr.Tulio Bertorini is the neurologist. Saw an orthopedic specialist in tupelo ms first because I had been having trouble out my hand for awhile. Thought it might been nerve related because of my work. Sorry I took so long before replying.

 

[poet1973]

Mupstateny

Yeah it's difficult for me also. I used to love to write thus the name Poet! And now I cant!🤪

 

[MupstateNY]

Poet, do you mean writing by hand or typing?

I'm working on finding a keyboard that will help me type as my hand gets weaker.

I have an inkless signature stamp arriving tomorrow. I want to get a power of atty for my spouse so he can sign for me in doctors' offices, because I have trouble with handwriting. Despite problems, typing is a lot easier currently.

 

[affected]

You can use lots of aids to type too such as head pointers, switches, speech to text and eye control.

 

[lgelb]

Dictation, while you have your voice, can be a great time saver and energy conserver.

 

[poet1973]

Mupstateny, affected,igelb

I understand but there's nothing like putting pen to paper! It's depressing when you can't do the things that one used to do especially for one's self! Not trying to be Debbie Downer just having to rant a little. My family have been wonderful about keeping me upbeat however they don't understand when I feel like my body is betraying me. But I love that they are trying their best and not giving up on me!!!

 

[affected]

Rant away poet - I can't imagine having to make these adjustments, even if I looked after my husband.