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Hi Delb,

I am sorry to read about what you are going through right now. You are really close to Dallas, according to the Google map that I looked up, and there are plenty of resources there (and in Seagoville) to help you.

1) Medicaid. Apply immediately, but you should actually be covered by Medicare if you have already been processed for Social Security Disability with an ALS diagnosis. Why has disability not kicked in yet?

2) Legal Aid. There are some free legal services in the Dallas metroplex, and I am sure that a lawyer would be willing to work with you both on your financial conflicts with your wife but also with your questionable firing from your job (plus Medicare/Medicaid assistance). Do a Google search for "Legal Aid" in Dallas.

3) Some sort of charitable organization. I am going to call the Methodist Church in Seagoville to find out who might be able to help you there in town. If you find someone who is willing to help you by reading what you write and then conveying the information to whomever over the phone, I think you will overcome the biggest hurdle that you are facing right now.

I'll think of some other things after you explore these first three options.

You definitely seem depressed, as you indicated in your initial post. It's normal to feel frustrated by the things that you *can't* do, such as talk on the telephone. When I feel overwhelmed, I try to play the "I might not [fill in the blank], but at least I can [fill in the blank.]" I can't say that I am perfect and always come up with quick solutions, but when I start to feel frustrated, I try to remind myself to focus on what I *can* do. In your instance, you are already reaching out for help through a means that you still have available to you--typing and the internet. So look for solutions that allow you to take advantage of your ability to communicate in writing. Take back control of your life by focusing on what you can still do. As you start to get things done, you will feel more motivated and energized to accomplish even more things. It's like a snowball effect, and you will slowly start to feel more positive about your life in general. Every time you accomplish something, give yourself a pep talk about what you just did. This will also help you. And start small if the big things seem overwhelming. Make a list, break it down into smaller tasks, and take things one step at a time. Every little thing you do will help you overcome your bigger hurdles, and eventually you'll get to where you need to be.

In the meantime, get some fresh air on this gorgeous day, and please remember that you are not alone, no matter how much you might feel like it--just look at all the compassionate, supportive replies that you have already received from others on this site! I'll be back in touch here on this forum topic after I have a chance to speak with someone in Seagoville, and I'll be sure to get an email address where you can contact someone for help.
 
Hi Delb,

I tried to post a reply yesterday, but it didn't go through. I am duplicating most of the original message here, but with some changes based on some research. I am sorry to read about what you are going through right now. You are really close to Dallas, according to the Google map that I looked up, and there are plenty of resources there (and in Seagoville) to help you.
1) Medicaid. Apply immediately, but you should actually be covered by Medicare if you have already been processed for Social Security Disability with an ALS diagnosis. Why has disability not kicked in yet?
2) Legal Aid. There are some free legal services in the Dallas metroplex, and I am sure that a lawyer would be willing to work with you both on your financial conflicts with your wife but also with your questionable firing from your job (plus Medicare/Medicaid assistance). Do a Google search for "Legal Aid" in Dallas.
3) Some sort of charitable organization. I called the Methodist Church in Seagoville to find out who might be able to help you there in town, but they didn't have any suggestions other than doing a Google search. If you find someone who is willing to help you by reading what you write and then conveying the information to whomever over the phone, I think you will overcome the biggest hurdle that you are facing right now. Why don't you ask your doctor if he knows any organizations in town that can help? Surely there is someone around there who would be able to make calls for you.
4) The Texas Health and Human Services Commission is located at 201 Malloy Bridge Rd. there in Seagoville. They can help with "medically needy" clients like you. They might also be able to help you get a TTY phone thing so that you can communicate over the phone without having to speak. Your doctor might also be able to help you get the phone assistance device, but I really think this Health and Human Services department can help a lot with your various needs.

You definitely seem depressed, as you indicated in your initial post. It's normal to feel frustrated by the things that you *can't* do, such as talk on the telephone. When I feel overwhelmed, I try to play the "I might not [fill in the blank], but at least I can [fill in the blank.]" I can't say that I am perfect and always come up with quick solutions, but when I start to feel frustrated, I try to remind myself to focus on what I *can* do. In your instance, you are already reaching out for help through a means that you still have available to you--typing and the internet. So look for solutions that allow you to take advantage of your ability to communicate in writing. Take back control of your life by focusing on what you can still do. As you start to get things done, you will feel more motivated and energized to accomplish even more things. It's like a snowball effect, and you will slowly start to feel more positive about your life in general. Every time you accomplish something, give yourself a pep talk about what you just did. This will also help you. And start small if the big things seem overwhelming. Make a list, break it down into smaller tasks, and take things one step at a time. Every little thing you do will help you overcome your bigger hurdles, and eventually you'll get to where you need to be. In the meantime, get some fresh air on this gorgeous day, and please remember that you are not alone, no matter how much you might feel like it--just look at all the compassionate, supportive replies that you have already received from others on this site!
 
Hello Del,
I have a website by SPRINT that may help you to talk on the phone. All you need to do is type in the box what you want to say and their reply will appear for you to read.
www.sprintip.com
It requires patients for the other person but most als places will be kind and wait while you type your statements.
I can feel for you man. My wife has threatened to leave by January. She wont see a psychiatrist as she was addvised at the vent rehab hospital. It really sucks when everything you have worked for comes crashing down around you. My family is to far away to lend assistance. I have 2 months to find help which doesn't seem to be as simple as it sounds. I just wonder what a judge will tell me I have to do.
Oh well I know this won't cheer you up but at least you know you arent in the same boat all alone.
Brentt
 
carolan,
thanks so much for researching this for delb, i have thought about him all weekend. I am a cals and had some oral surgery over the weekend and it was HELL here, I should of planned that better and got some help for myself and my hubby. WHEW will never do that again. I had mentioned to him in an earlier post about Health and Human Resources, they have helped me TREMENDOUSLY. I was going to check info for him, but I am glad that you did that, (a little under the weather) I am new to this site and it has helped me alot, I don't feel alone. Thanks for helping him. Know I can sleep a little better. I appreciate each and everyone of yall!
Annette
 
Delb and Brentt:

I'm so sorry to hear about how your spouses are responding to your situation. Thankfully, you have found this site which will be your support from now on. The people on this site are the most wonderful people, not only in providing emotional support, but also practical and excellent information. As I progress in my illness, and also being alone, I know I can always find a comforting thought or suggestion by coming here. I will keep you in my prayers.
 
Thanks for all the information. I have been approved for disability but it does not start til after 6 months according to the law. And when it does it says since I have ALS I can get on Medicare quickly at that time. But this will be early next year. I have emailed Sprint my cell phone carrier several times regarding my condition and needing rates for text messaging or changing my plan. But like most of my emails, I never receive an answer. My doctor is also trying to help me, but so far with no results. Still waiting to see what my wife will do since there is very little money left in the joint checking account. Doing a lot of thinking. Oh, I think I forgot to mention I also had a older brother. He was 10 years older than me and watched what happened to our mother with ALS too. He killed himself about 15 years ago when he felt weak and thought he had ALS. We were different in a lot of ways. Just something else that haunts me.
 
delb,

how old are you if you don't mind me asking? you must have a lot of fortitude! hang in there!
 
Don't mind, 59. Going on 12,000.
 
delb,Have you actually gotten a diagnosed yet? If so my husband got his alot less than the 6 month waiting period. we do live in the same state, I know before when we would go to the SSA since 2003, no avail but then when I did get the diagnosed. It was almost the next month I believe. Check into that, I am waiting for an appeal to see if he can get some back support due to the fact that I have papers from "them" stating the knew we were contacting them. I don't know how the back disability will fare, but I hope well, I don't know how I will bury him, so I am hoping, this journey has been sort of a strain for me also, my family turned their back on me, because my husband is black. When he was the big entertainer they were the first in line for the backstage tickets and then when he became ill, he became a "typical" black man. Whatever that is suppose to mean, both my parents are dead and I found that Jesus has always been here for me, sometimes I just couldn't see it, I have learned not to dwell on the fact that my family has TONS of money and can't help me in anyway. I guess the old saying that when the going gets tough the tough get going. Anyways I am glad that things are looking up for you, I could go on and ramble all day about my problems, But keep your chin up and things will look up!
God Bless You!
Annette
 
delb,

i used to live in Dallas, and i know that UT has an ALS center that will see you. Dr. Wolfe is who my mother in law was referred to. You have to be referred by your doctor and all your records submitted and reviewed before they will make you an appt. It is a tedious process to get in to see them, but they will get you in. That is where my mother in law was going to go, but we moved her to the Houston Area with us and got her in to see Dr. Kwan down here.

My mother in law had no insurance, and they were willing to take her on as a patient, so i think as someone said, most will give you care for free. we are working to get my mother in law her Medicare Part B effective right now.

good luck.

If you need the name of a neurologist who could see you to get the ball rolling to get into UT, i have a couple of names, but your doctor you are currently seeing should be able to fill out their request form and send your records over so you can try to get some help.
 
delb:

You are a fighter, I can tell. Good for you, we must all stay strong fighting this illness and you'll find many a good role model on these boards.

Annette:

You are an excellent example of a good spouse fighting for your husband. Yes, Jesus is always there to help us, even while overcoming challenges such as yours and mine. People can be prejudiced at times, but you are responding with strength and courage.
 
Freddiesnetty,

Don't know what a DX is ?

Texgrl,

I had a appt. at UT back in September. Told them and my neuro I didn't have insurance and was told thank you, and never heard from either again. My doctor is aware of all this and seems to be working on helping me. But as he said, there is not cure for doctors yet.
 
DX=diagnosis

You are kidding that UT did that? That is just terrible. I had a real hard time even getting them to aknowledge that they had the medical records, but i harrassed them endlessly every day until they had them. Meanwhile i was working an angle here in Houston, and it went much smoother, so by the time UT did call me, i already had my mother in law in to be seen down here.

I am so sorry things are going like this for you with your spouse. I feel her reaction is out of fear and anger, but for me, leaving would never be an option.

have you emailed the ALS association in Irving to see if you can get a home visit from their representative? do you need help contacting them? I would be willing to ask the Houston representative down her for a name of someone up there you could contact if you like.

my heart goes out to you because this disease is scary enough when you have people around you to support you but it must be terrifying without someone to lean on.

I've also really became disgusted with the medical system in general because at times it has been so hard to get help from the right people. we got lucky with Dr. Kwan here in Houston. I'm certain he is an angel on earth.

please let me know if i can help you in any way.
 
I have lost faith in the medical community too. Have seen about a dozen doctors and two neuros so far. I most all instances I knew more about ALS than they did. The first neuro was very good, but too negative. The second was also very good, but had no interest in seeing me again. Just wanted her big fee and since I didn't have insurance any longer forgot about me. And yes UT did that. Have never heard from any of them unless I went to their office with money or insurance in hand.

The spouse situation is up to her. The ball is in her court. No more joint checking or controlling decisions on my assets.

My emails to medical places or people never get a reply. I have been forced in life to be a loner since I can remember. So this does not surprise me.
 
And yes I have had my DX (diagnosis) by myself in the beginning, but told no one. And by the 2nd neuro who said she took her diagnosis seriously.
 
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