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eworth76

Member
Joined
Sep 8, 2014
Messages
11
Reason
PALS
Diagnosis
09/2014
Country
US
State
TX
City
Houston
I found this forum, and have already read lots of useful information. I am a 38 y/o male that was diagnosed today with ALS. I am currently going through a litany of emotions, which I am sure is quite normal. I am a positive guy, and also a pragmatist.

What concerns me the most, as of this very moment, is that I am the financial backbone of my family. I am the GM at a large organization, and as such verbal communication is a vital part of my responsibilities. That has been a struggle for the last several months as I was going through the process of diagnosis. I am also aware that there will come a time that I am no longer able to fulfill those duties.

What I need to know, is what financial help is available for people with ALS to help support my family? Also, since my insurance is through my company, where do I go from here?

Any help is much appreciated.
 
Are you a veteran by chance? Have you served any in the military? They have great benefits if you did.
 
Off the bat, your financial help will come from:
- your work STD/LTD (contact your HR department)
- Social Security Disability Ins (ssdi) (the day you put in for work STD, go to the SS office and file)
 
Thank you both for the quick response. Sorry for the omission, but I am not former military.
 
>I am a 38 y/o male that was diagnosed today with ALS.

sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life.

I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

if you have not gotten a 2nd opinion, consider a referral to Stanley Appel's clinic at Houston Methodist. It may be worth it, as ALS can be a tricky diagnosis.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,


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Max - Monday, September 08, 2014 2:24:57 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Yes, please be extremely careful that you don't fall. Don't let pride stand in the way of using a cane or a walker! You just can't afford the risk of a fall. You might ask your doctor about getting the flu and pneumonia vaccines. Also, I would recommend either drinking Boost Plus or Ensure which will help you get your proper nutrients. Also, I think some clinics have loaner closests in which you can get some equipment that you might eventually need. You might also check in see if you could participate in a clinical trial? They are coming out with some new one's.
 
Thank you!

I was diagnosed at the Sugar Land Methodist by Dr. Lalani. He was a student of Dr. Appel's and he has referred me to him for a second opinion as well as treatment.
 
Contact your social worker at the local ALSA. When you qualify for SDI you will also qualify for Medicare. I'm very sorry you are here. Sorrow was the primary emotion I felt after diagnosis. My wife and I cried a lot. It settles down over time as resignation fills in. Good luck and keep posting. Alex
 
and vitamins:

Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin
Vitamin C 1000mg CAP 2 x per day ALS 10/1/2013
Vitamin E 1000 IU CAP 2 x per day ALS 10/1/2013
Vitamin D3 2000 IU CAP 1 x per day ALS 10/1/2013
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day ALS 10/1/2013
Dexilant 60 mg CAP 1 per day by mouth ALS 1/13/2014
Tussin 30 ml Liquid 3 x per day ALS 1/13/2014
Mucinex 1200 mg TAB 2 x per day ALS 1/13/2014
 
Thanks for the info. I take a multi currently, and will look into the rest.
 
Also, my doctor did refer me to Dr. Appel for a second opinion and treatment.
 
My understanding is that I can find an ALS association that will help guide me and my family through next steps?
 
So very sorry you have to be here. All of the above posters have very good advice. You will be eligible for COBRA insurance after you file for disability from your work. That will fill in the time till medicare becomes available. If you are not working, once you become available for medicare I think COBRA automatically ends. You might want to go to an insurance broker to find the best plans in your area.
 
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