Here goes

[Brad0608]

An official diagnosis came 2 Monday ago I guess my story begins in October 2012 when I woke up with body wide twitching and a burning sensation threw out my body I was sick with flu like symptoms right before that like everyone else went to doctor google so scared myself with als months went buy no weakness was able to shake the scare plus after my emg /NVC doc told me you have nothing to worry about so fast forward to September this year my voice was horsed for a couple of weeks saw my GP saw fasciculations on tounge recommended a neuromuscular specialist downtown ran a boat load of test came back with the 3 scariest letters in the alphabet ALS now 35 with a 6 and a 3 year old only positive note besides my face and tounge every thing else looked good he said so talking is an issue my my arms legs and back we're alright for now but tounge is scary to look at but I can still whisper l love you to my daughter and son my daughter trying to understand but I really trying to shelter her from the death conversation that's my story

 

[ntd19]

I am sorry you have to go down this road. I suggest you get yourself an ipad or ipad mini with a keyboard and an app that will speak what you type. My grandkids have no issue with this form of communication and your kids will not either. We use an app called Predictable and love it after trying many. This will help a bunch with communication. Keep asking questions and searching this site, lots of good information and people.

 

[swalker]

I am very sorry to welcome you here, but welcome nonetheless.

I agree that getting started on a text to speech capability soon is a good idea. In my case, I banked my voice while it was still strong enough to go through recording a large number of phrases.

I am glad I did that. While I do not yet need it, my voice continues to get weaker and it is simply a matter of time before I will have to use a text to speech app. It is great to know that I will be able to "speak" with some semblance of my own voice when the time comes to transition to the text to speech app.

I know the initial period after diagnosis can be a whirlwind. Try to enjoy each day as it unfolds, getting the most out of every day.

Steve

 

[lgelb]

Brad,

Not to question your process, but we recommend that everyone get a 2nd opinion to confirm the diagnosis, and as much so in your case, which isn't a typical onset story. When you say "downtown," do you mean Chicago? I would try to go to Northwestern or UI. If you've already been to one, I'd go to the other.

You may want to look at the sticky on 2nd opinions.

Best,
Laurie

Northwestern University
Les Turner/Lois Insolia ALS Center
675 N. St. Clair, 20th Floor
Galter Pavilion
Chicago, Illinois 60611
Director, Robert Suifit, MD
Jennifer Armstrong, RN, Nursing Supervisor
312-695-7950
www.lesturnerals.org

University of Illinois at Chicago
Department of Neurology
912 S. Wood Street
855N NPI, M/C 796
Chicago, IL 60612-7330
Director of Clinic: Julie Rowin, M.D.
312-996-9445

 

[scaredwifetx]

I am so sorry you have to be here. Do know that any advice, concerns and rants you have can be helped here. With ALS there is no better support than what you will receive here when it comes to questions. I am truly sorry that ALS has come into you and your families life.

 

[soonerwife]

So sorry to hear about your dx.

 

[Lkaibel]

Very sorry to hear about your diagnosis Brad. Lori gives good advice. It can never hurt to get that second opinion from the very best ALS specialist nearest you.

 

[KimT]

Oh Brad, I'm so very sorry. I cry for you and your children. My diagnosis was very lengthy and began with twisting my left ankle in 2012. I was diagnosed in 2015. Even after seeing the best neuros in the Southeast, it still took another 8 months to get a diagnosis all because I was strong for a woman my size.

I'm going to get the adaptive software. I'm getting both touch to speech and speech to touch because I don't know if my voice or my hands will fail first.

Praying for a very slow progression and lots of good memories for your children. They will take to the technology. Make it a game for them.

 

[Nuts]

Brad, I am so sorry to read of your diagnosis. We will be here for you.

Please do take Laurie's advice. A second opinion is wise, and a multidisciplinary ALS clinic is a must. No normal neurologist. Get thee to a clinic!! You will recieve help and advice that you will not get from someone who does not specialize in ALS.

Becky

 

[KimT]

I agree that a multidisciplinary ALS clinic is a must BUT if you are going once every three months and it is far from home, getting a local neuro who can write an Rx, order PT or OT and address pain is very helpful. My local doctor has done so much more for me than clinic. He is the one who fought for my work ADA accommodations and eventual long-term disability. Everyone in my local support group has a local neuro in addition to the specialty clinics in Jacksonville. In fact, my local neuro made the dx 8 months before the ALS doctor and I was able to start my paperwork quickly. He fought hard for me.