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delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
After watching my mother go thru ASL and die from it 30 years ago, now I have it. I have been studying her progression & ASL for the past 30 years. I has been slowly coming on for the past at least 3 or 4 years. I blacked out last December for about 20 minutes. No one was home so when I woke up I felt OK and went about my normal Saturday. I had many doctors and tests the next few days that found nothing. About a month later I started losing my ability to speak slowly over the next 8 months. I lost my job in July due to not being able to speak. They said other than that I was doing a super job. I knew what it was when I was seeing close to a dozen doctors. All there tests came back normal. In July I saw a couple of neurologists The best one said I had ASL. My problem is my tongue which affects my speech and swallowing of food & liquids. Lost from 185 lbs to my current 125 due to eating & drinking problems. Also have a limp with my left leg that started at about the same time as my speech problem. Have no family and friends have been about 0 since this. My wife who I married over 20 years ago even talks of leaving. My condition not getting any worse other than the 2 areas affected at first. With no insurance without a job I can not afford more tests. Just see my regular doctor once a month to help me however he can. I have a strong will and believe this has helped me more than anything.
 

cheryilyn

Active member
Joined
May 22, 2007
Messages
62
Reason
PALS
Diagnosis
Sept. 06
Country
US
State
Oregon
City
Salem
Hi Delb,
sorry to here that you have ALS. Talk to the Dr. that said you have ALS. With his diagnosis you should be able to get social security and medicare. Mine was approved as soon as they recieved the diagnosis. I also have bulbur onset. One of the first things my Doctor recommended was a feeding tube as I was also dropping weight. you have lost a lot and need to stop the loss as quickly as possible. With a feeding tube you can actually put some weight back on. Good luck with everything.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Delb,

I am so sorry to hear this. How could your work let you go because you had ALS and not talk? That sounds like an American with Disabilities violation. What kind of job was it?

As far a disability you can start the application on line at http://www.ssa.gov/d&s1.htm

You do not need a lawyer in the beginning. Also there is a thing called the TERI laws which states that if you have a clear diagnosis (DX) of ALS you can get benefits pretty quickly. http://www.ssa.gov/OP_Home/hallex/I-04/I-4-3-43.html - This is one of several website on the SSD website. Just type in TERI in the search box under the first website above.

One more thing. You may want to try a free program on your computer called "ReadPlease" It will speak everything you type in it. That way you can talk to your wife and others directly. That website is http://www.readplease.com/english/downloads/ just download the free trial. Another program downloads with it for 30 days but the FREE program remains. I hope this helps.

God Bless you and give you peace. Sincerely, Peg
 

delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
Hi Cheryl,

I have no insurance and can't afford to see the Neuro. She is very expensive. I still see my original doctor who commuicates with her. The first Neuro I saw asked if I wanted a feeding tube. But I said no. I can still choke down some food and liquid. I don't give up and am learning what goes down easy and what chokes me up. Several months ago I blocked my windlpipe several times. Coughed hard freeing the lodged food with my last breath. This has not happened again, as I have learned a different way of eating that works for me. My weight this month seems to have stablized, as I use a scale to see if I need to try to eat more.
 

delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
Hi Peg B

I have already filed and been approved for disability. Just have to wait til next year for benifits to start. Thanks for the info and sites, I will check them out.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi delb- welcome to the forum but sorry to hear about your DX and the additional trouble in your life. Everybody is right, though, about getting registered with the ALS clinic and MD chapter near you. They have loaner eguipment, for starters, and maybe even someone who can help the wife deal with what is going on. Please keep in touch! Cindy
 

delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
Hi Cindy,
I don't have insurance to be able to go to the ALS clinic if there was one here. Maybe when I get on medicare or something I will find one. I did go to a oriental clinic for it during the summer. Acupuncture and herbal medicines. Don't know if that helped or not, but it increased my resolve to beat this problem. I will keep in touch! Del
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
delb,

Call the ALS Clinic you wish to go to and explain you have no insurance and explain your family history. They will want to see you.

The MDA has a fund set up to cover those patients that have no insurance. We just went through this in July with my husband, as we were waiting for Medicare to kick in and his insurance through his company had run out.

PLEASE, call them!

Let us know what they say. You really need to get to the clinic.
 

delb

Distinguished member
Joined
Oct 30, 2007
Messages
155
Reason
PALS
Diagnosis
07/2007
Country
US
State
Texas
City
Seagoville
I can not call anyone since I can not talk. I can not order food in a drive-thru. Also my struggle with eating and drinking makes it impossible to go to any restaurant to eat. When my neuro found out I had no insurance the just said goodbye. She had referred me to Southwest Medical Center. They also stopped contacting me when they found out I had no insurance. My longtime doctor put it best. He said it looked like it was just him and me to get thru this thing. He wants and keeps my papers on this disease. I can only write what I want to say, but am supprised at the number of people who don't want to read. My wife is even one of these.
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Delb

I am offended that no one wants to read what you have to say. You write to us, not only will we read it, we will also listen. And respond.


You are in my thoughts. I know how tought it is. And many more people to!


Sorry you are a Victim of this Horrible disease.

Lorie
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
delb,

Call the ALS Clinic you wish to go to and explain you have no insurance and explain your family history. They will want to see you.

The MDA has a fund set up to cover those patients that have no insurance. We just went through this in July with my husband, as we were waiting for Medicare to kick in and his insurance through his company had run out.

PLEASE, call them!

Let us know what they say. You really need to get to the clinic.

Delb,
I agree with Jimercat. I know that you have said that you cannot talk in order to make the phone call, but if you can get your doctor to make the call for you, he/she can be your voice. Your doctor can call the MDA for you too. Someone has to be willing to care for you. I think this is against the law for doctors to turn their backs on you... if it isn't, it should be!

Take care.
Pam B in Va
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
delb,

you can contact the clinic via email. and the als assoc.



you have technology at your finger tips! USE IT!

Find the ALS Clinic site and email them or the MDA or the ALS Assoc. Someone will help you if you want them to. Hell, email them all!
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Del, my heart goes out to you. God bless you, dear. What you are going through reminds me so much of what my son went through. Every time there was a change in my son my heart broke more and more. I never thought that I was going to actually watch my son fade away right before my eyes. It hurt me so much to watch him. Just like you, he could not speak, I missed hearing his voice terribly. I would dream of him getting his voice back, running, and laughing like a little boy, and then when I'd wake up, I just laid there crying, and asking over and over "Why?" If they say als is about 135 years old, what triggered this hellish disease? I wonder what is causing it? Man's inventions or what? I am talking about release of chemicals or what? Maybe we should have kiept our horse and buggies! God bless!

Irma

PS---Haven't been online for about three days. I was having issues with my computer. It was really out of whack, thank God I figured it out!
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
I have spoken to the MDA association, which I joined for free, and the ALS association, which I joined for free. They both told me , by email, I could have an appointment anytime I needed it for Doctors to see me and they would help get equipment for me as needed.

Use the email to reach them directly and find the closest one to you and communicate by email.
Try these links to locate one near you
http://www.alsa.org/community/clinics.cfm?CFID=4973111&CFTOKEN=86348615

http://www.als-mda.org/publications/alscare/caring.htm#respir
Click on the MDA in your community and enter your zip code and go from there.
I hope you are able to get the help you need soon.

God Bless
Capt AL
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Del- I hope you are feeling a little stronger emotionally today. It is unfortunate that, along with this terrible disease, you also have to be your own best advocate but if you don't speak up you may regret it for a long time. Go for what you deserve! Cordially, Cindy
 
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