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cajuntexusa

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Joined
Apr 5, 2008
Messages
46
Reason
PALS
Diagnosis
04/2008
Country
US
State
TN
City
Thompsons Station
My husband has been diagnosed with ALS. I need some opinions about this disease.

He is currently drinking creatine and protein drinks. It seems to help him. Do other vitamins work or not work?

His legs are strong but he has extensive loss in his arms and shoulders.

We are waiting for the insurance company to tell us the price of the drug. According to our doctor it should run $700 with out portion being 20%. I did ask about Lithium. He didn't say whether he will prescribe it. Can we get this from any doctor?

We also applied for SSDI but no word yet. Any idea on how long it takes? My husband is no longer working so we have no money coming in.

We are also curious about clinic trials. we are on a list at the hospital. I guess I'm not patient.

I will stick with him throughout this illness, no matter which road it takes us down.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Sorry to hear of your husband's diagnosis.

As for the lithium. I asked my GP to prescribe it and he did and he monitors my blood level as well.

I applied for SSDI in December and was given final approval two weeks ago. I think the time it takes depends some on how soon they get the medical records. With ALS it is a yes always. My benefits will start in June - SSDI and Medicare.

People here are very helpful and full of info. And you can always use the Search button.

Your husband is blessed to have you.

Sharonca
 

andyvaughn

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Joined
Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
I am sorry to hear of your husbands diagnosis. My husband was diagnosed in February. I have been on a HUGE learning curve. I can tell you our experience with some of your questions. My understanding of SSDI is it takes about 5 months from application until they start paying. Do you have state disability insurance where you are? We do have it in California, which normally would be the first payor until that benefit runs out, but my husband is self employed and never paid into it, as it is optional when filing taxes. He never saw this coming, to say the least. Anyway, if you have state disability or work disability that should come first. Then the medicare/SSDI kicks in. They also have
SSI is another program that pays on "need". But boy, do you have to be needy. They only give a small amout per month, and you can't have assets over 2000.00, and there can basically be no income. If neither of you are working and don't own anything, it might be available to you. I think, but don't quote me on it, that you can have a car and they don't ding you for that.
As far as the rilutek, again, if you aren't working, there are ways to get the drug at low cost. Type in rilutek into your search engine, you will find the manufactorer home page, there is a link to low cost availability. For us it is around 200.00 a month on our copay, which is 20% (our pharmacy charges 1000.00 a month, but going to price it at other places)
As far as the lithium, many people printed up the italian study and took it to their routine doctor. In our case our ALS neurologist prescribed it to us. She wanted him stable on rilutek first, so he has only been on the lithium about 10 days.
There are a lot of resources available to ALS patients, don't be shy. The MDA provides some money for certain equipment, register with them, register with your local ALSA chapter... get every possible resource together you can.
As far as other supplements, I have my husband on a bunch, our neuro recommends coq10, vit e, vit c, alpha lipoic acid, vit d, cucurmin, multi vit, b50, - poor guy takes a fist full of meds three times a day. Talk to your neuro about what he/she advises.
My husband also is unable to work, he unfortunately is progressing very rapidly, and his job was very physical, so I understand the financial stress you are under. We have sold a bunch of stuff to help financially, and we are selling our house. Once that is done we will be okay on my income. I am very fortunate to telecommute however, so I don't have to worry about some things that I know others do have to overcome.
I wish you the very best. There is a lot of information here, and other sites on ALS. I am really active in all of them, trying to find out everything I can for my husband. I too, like you, am fighting with everything I can to help him. I have found a great deal of comfort in ALS advocacy. It is a way for me to feel helpful in the face of something so helpless...
Wish you well
Andrea - wife of Pals Jim..
 

sharona

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Joined
Dec 8, 2006
Messages
488
Country
US
State
il
City
joliet
What drug is he going to take that cost that much? Make sure the doc put ALS diagnosed on forms.God Bless you & your husband I will add both of you to my prayers.
Sharon
 

CindyM

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Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello CajunTexas. I am sorry to hear about your husband but glad you decided to join us. As Andy says, this is a big learning curve but folks here will help at every step of the way. Cindy
 

brooksea

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Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
cajuntx,

sorry about you husband's diagnosed. You will find lots of suppport and info on this forum.

Lithium can be prescribed by any doctor and your husband's bloold levels will need to be monitored. The dosage being prescribed for ALS is very low and should have very few side effects/toxicity. If you r husband does decide to take lithium, you will need to be aware of foods and supplements(vitamins) that may interfere with lithium levels in the blood.

SSDI will be automatically approved for one that has ALS. It will still take 5/6 months to get the first disbursement, so if you have no income you may want to apply for SSI and other programs, which the SS office should have evaluated you for when you originally applied.

Good luck and and hang in there!
 

cajuntexusa

Active member
Joined
Apr 5, 2008
Messages
46
Reason
PALS
Diagnosis
04/2008
Country
US
State
TN
City
Thompsons Station
Thanks everyone for all of our input

The drug that the neurologist wants to give him is Rilutek. We are waiting to see what our costs will be. We do have insurance to cover some of the costs.

We do have disability insurance with our company here but it has not been approved yet. It has been an ordeal from the very beginning. I have my husband's medical reports so I will bring them over to Social Security in hopes of speeeding up the process.

I am so glad that I found this forum. I have read a lot of posts here and confusion is clearing up on what we need to do.

My husband was online today and found a link to someone that has success in beating the odds of ALS. Have you heard of Eric is Winning? He wants to read his book and see if that will help his situation.

Thanks again for your kindness,
Aleta
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Aleta - please be careful out there. There are tons of scams and people waiting to take your money. I'm not saying the Eric thing is a scam - just saying be careful. Do a search on this forum and perhaps the PLMS site. Don't want you to be taken advantage of.

Sharonca
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Eric is winning all right. All the way to the bank. Tell your husband not to waste his money. Eric tells you about all these wonderful supplements that he will sell you. No one that I know of was able to verify if they work.
AL.
 

cajuntexusa

Active member
Joined
Apr 5, 2008
Messages
46
Reason
PALS
Diagnosis
04/2008
Country
US
State
TN
City
Thompsons Station
Eric is Winning

Thanks again for your comments. I realize there are scams out there and we are watching all very closely.

We have an appointment with the ALS clinic and I am hoping that they will share information with us as well.

I will read up on Eric and see what I can find on this site.

Take care and God bless,
Aleta
 
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