Officially diagnosed today

[Laffy130]

I want to first say, God is good...all the time! I am a 28 yr old, mother of a beautiful 6 month old baby and was officially diagnosed with ALS today. In a way, we were prepared for the news because we had two abnormal EMG test and clear blood, MRI, and spinal tap. Our ALS specialist has been awesome in keeping us informed.

My husband and I are determined to let God get the glory in this situation no matter the outcome. I know there is no official cure, but that never has stopped God from doing the impossible.

For all the seasoned veterans of this forum, what are my options with things like SSDS and Medicaid? When should I apply for a handicapped parking permit? Are there any financial assistance programs?

Thanks for to all those that take the time to respond to this.

 

[ottawa girl]

I am so so sorry. I hate ALS! More so today.

Being Canadian I can't speak to your SSDI or Medicaid, but I think the sooner you apply, the better. Once that housekeeping is done, you can take a deep breath, and take it one day at the time.

Enlist the help of friends and family. They will be so happy to be asked.

We are here for you. Anytime.

 

[Txgirl]

I am so sorry. It breaks my heart to see a young new mother diagnosed with this disease. I pray that you have a very slow progression and a cure is found soon.

As for SSDI & Medicare. Apply now for the SSDI and the medicare will automatically follow without you doing anything.

Handicap parking permits- your doctor needs to write a prescription and you will take it to where you get the handicap permits and give it to them. They issued me 2 at no cost. Not sure about other states.

The MDA loaner closet has really been a blessing to me for any equipment I need. They delivered a new permobile M300 power chair to me last week and several other items.

I will keep you in my thoughts and prayers.

 

[FirstMate]

ALS is one of the few diseases that is fast tracked for SSDI. Medicare follows the SSDI approval.
You are so young and I'm so sorry that you've been given this diagnosis. I will be praying for you and your family. The first few months are the hardest.

 

[sadiemae]

With SSDI their is the automatic 5 month wait either from the time you last time you worked or the date of your D X, or the date that you applied. In our situation, this is what happened. The company my husband worked for closed in Dec 2008, and he began collecting Unemployment. We finally went to the ER in Sept 2009, because I figured out he had ALS. He had been having symptoms for 2 yrs by this time. His actual D X date was Sept 3,2009. Doctor stated his ALS began in Jan 2009, and Social Security accepted that, so our 5 month wait was Jan 2009 to May 2009. He was approved, and Medicare became official in June 2009, with payment of SSDI to begin in July 2009. We got paid retroactively for June, July and Aug. Even though he was collecting Unemployment, that is not considered income for Social Security benefits.Good Luck to you.

 

[bowser]

ALS is one of the few diseases that you are eligible for Hospice once you are diagnosed.

Hospice bills SS and we do not get any bills for prescription drugs, Hospice services, or all the equipment they have furnished us.

 

[Barbie]

Laffy, one thing about ssdi and medicare, you payment is based on what you have made and how long you have worked or not worked. the best thing you can do is make an appt. at social security, and see what you will qualify for.

I am really sorry about your diagnosis.

 

[MaxEidswick]

>and was officially diagnosed with ALS today

Hi, Lafy -- I am new here, too. There are a lot of good posts to dig through, but one thing is certain: Everyone is different and the evolution is seemingly random.

Hugs to the baby!

Max

 

[JustTrying]

I'm so sorry. It hurts me so much to see young moms diagnosed with this. Your faith will carry you through.

 

[frankb]

Excellent advice, all. Also, don't forget the nearest ALS Chapter. They are of immense help for all things related.

 

[Nikki J]

I am so sorry. Hoping for VERY slow progression for you

 

[cervus]

So sorry for your diagnosis. It's always horrible but even more so when young families are affected. You have found a great source in this forum for all kinds of information related to ALS. Yasmin.