Diagnosed yesterday...

[Jeff Long]

I posted here about 6 weeks ago that my neuro was stumped but ruled out ALS. Unconvinced, my GP ordered a 2nd opinion and I knew from the clinical exam what was coming. Much more competent neuro the 2nd time around (at UNC Chapel Hill), and yesterday's EMG was pretty grim. Bulbar onset, most troublesome spot the tongue. Crap.

I am retired military and am planning to contact the VA this coming week to get things moving as best I can. Don't want to wait because I don't want to be doing this when I can't talk! Having spent 23 years in the service, I know things can be slow and the paperwork and processes cumbersome. I would appreciate any helpful insight from those of you who have worked with the VA already. I want to get as much done when I can so as not to burden my wife with the hassle of dealing with the VA on my behalf. She's got more than her share of headaches coming!

Thanks in advance, and be assured I'll be here for more answers, contact info, etc more than you'll want me to be!

Jeff

 

[susanf]

I'm sorry Jeff. I have bulbar onset too. I know your bombarded with info but try to see what FDA trials are by you.
Your in my thoughts.

 

[momap53]

So sorry you've had to join us. You'll find a wealth of info here. Good luck.
Deb

 

[Ms. Pie]

I am truly sorry you have cause to be here but truth be known, in our situation this is the most friendly, understanding, knowledgable, caring, helpful place to be. I don't know what I'd do without all the people here. Who better to understand where you're coming from but people dealing with this unreasonable disease. Please stay close and don't hesitate to ask any questions about absolutely anything.
{{{BIG HUGS}}}
Marta

 

[notgivnup]

Oh Jeff, I am so sorry you have gotten this D X, but know we all are here for you. As friends and family we will try to help in any way we can. The family here is full of Love, Compassion and knowledge to help you on this journey. Love and ((HUGS))

 

[Beach Bum]

Jeff,
Sorry you have to be here,I am also Bulbar.First thing I would do is call the PVA,tell them your story,they will help you very very much.Second thing is enjoy life to the max,be proactive about your future.The VA has helped me so much and they will do the same for you,I wish you and your family the best.---------------------------------------Ken

 

[KissJ]

So sorry to learn about your diagnosis! You have come to the right place for support! And, you are doing the right thing to get started right away with the VA. Yes, it is a slow and complicated process. What has helped us is the Paralized Vetran's! We have an advocate through them, and he keeps things moving...it is still slow, but he "rattles cages" as he says when it gets too slow. He also helped me to figure out the system and fill out the paperwork. Also, get a VA benefits handbook. It is online, but having a book in hand has been helpful. Blessings to you and stay in touch!

 

[BeckyW]

Jeff, sorry to meet you here but it's the most informative and comforting ALS site I've found. I too am bulbar and have no voice after being diagnosed two years ago. Thanks goodness for all technology we have and what's being developed. My I Pad and droid phone are lifelines for me. I communicate with my family and friends through writing on my I pad and with texts and emails and here with this family. I agree with beach bumb to travel and do things your wife and you enjoy.


Thank you for your long service to our country.

 

[jwife]

Welcome to the most compassionate group of people around. Soooo sorry for your reasons for being here. You can learn so much from other members. You can share your worries, concerns and celebrations. This is the most valuable resource for finding out all kinds of things that you didn't even know you needed to know. GOOD LUCK! You are in my prayers.
Janis

 

[tmasters]

Jeff,

Sorry you have to be here. Please ask questions and feel free to vent. There's a pretty good group here ready and willing to help.

Don't be afraid to go through the grieving process if you haven't already done so. This diagnosis is pretty tough.

God bless,
-Tom

 

[Sammantha]

So sorry, I go to UNC too.. Dr.Howard and Roth...There is a man in Emerald Isle I hear about from work, he was in the military and developed ALS at a very young age, if you need I can find out how the VA is helping him,,,I know their is a VA hospital across the street from UNC but I dont believe they are as good.

 

[island]

Hello Jeff
So sorry about your diagnoses, did you not have a clean EMG ? Was your 1st neuro a ALS specialist. ?
Was your 1st clinical exam normal?

 

[dragonlibra]

Jeff, sorry you have to be here. ALS diagnosis sucks! As a newbie here as well the forum members here are great support.

The leadership & strength you learned in the military will be of great help. Thank you for your long service.

 

[notme]

HI Jeff

I was so hoping you'd get a different answer. Please, get another opinion just to be absolutely sure. (discount first doc) a confirmed diagnosis should always have a second opinion by an ALS specialist.

In answer to your question--contact the paralyzed veterans association for assistance in getting the ball rolling. You will be compensated by the VA both with money and aids you'll need--which should help with the financial burden.

While you can still speak, let your wife know your wishes and begin the process of letting her, or whomever you trust, be your 'voice' when you no longer have yours. Take advantage of all the assistive tech out there and learn to use it sooner rather than later.

BarryG is also bulbar onset, and should be able to answer any specific questions in that area.

I'd also suggest you start another thread that has VA in the title for more specific VA answers--but obviously, with 30 years in, you will have no problems with the assistance.

I'm so sorry you had to join the community, though.

 

[ReneeM]

Jeff

I am so sorry you had to be here... but this is definitely the place to ask anything you need an answer to