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Danijela

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I was wondering what it was like living with ALS 10, 20, 30, 40 years ago, what was available in terms of support equipment and general managing of the condition. Some of you with familial 'type' may have experienced it with your parents or other family members. I imagine that the provision was pretty poor.

I have read somewhere that holistic approach to care, multidisciplinary teams and technological advances together contribute to a greater quality of life and survival than percentages involved in the licensed drug (Rilutek).
Additionally, I imagine a number of differences existing across different countries, in terms of access to specialist ALS clinic, treatment etc. Do you guys in the States have to pay for Rilutek?

Danijela
 

brendapals

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Danijela,
I don't know about the statistics of ALS prior to 2003-that's when my oldest brother was diagnosed. He was 56, retired Navy, very active in volleyball and bicycling, he progressed very quickly, Rilutek was not available then.

Anyway, he died in 5/04, just 14 months after his official diagnosis. I honestly think he probably had a heart attack or a stroke, given that none of the men on our dad's side of the family lived past 62. Never will know for sure though.

It is a time for so many questions, hopefully, someone will get on here that has more historical knowledge than I do. History is not one of my favorite subjects, so I tend to "skip" a lot of info. I actually try to live every day as if it were my last, I don't sweat the small stuff as much anymore, I am learning to quit being an adrenalin freak ( tough to do when you're an old ER nurse ).

My pharmacy worked with my insurance co., and I get a 3 month supply of Rilutek for $30. I have heard that it's about $1200 a month. If my insurance didn't cover it, I don't know that I would be taking it. But, since it does, and I have no side effects from it, I will take it and hope that I'm benefitting from it!

Glad you enjoyed your walk to the post office, sometimes walking is a great stress reliever!
take good care,
-brenda
 
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John1

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I was wondering what it was like living with ALS 10, 20, 30, 40 years ago, what was available in terms of support equipment and general managing of the condition. Some of you with familial 'type' may have experienced it with your parents or other family members. I imagine that the provision was pretty poor....Danijela
The mother of a friend of mine developed ALS about 40 years ago. Newfoundland was very poor in those days and quite backward from a health care perspective. As well she resided in an isolated town. She lived for a miserable three years. As her condition worsened she basically spent the remnant of her life in bed without so much as a manual wheelchair to move her. She lost her speech early and had no communication devices. So she was immobile, isolated from friends and family and likely had little understanding of the course of the disease. Appalling really.
 

Danijela

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Thanks both. I understand Brenda that history is not everyone's favourite subject ;) and it good to be in here and now (something I am learning, with some difficulty). I am a sociologist, so this part of my identity always makes me pose questions of this nature. Issues of equality and access matter greatly to me too, and I think historical perspective can provide some useful insights in improving things for people here and now.

That is a horrific story John. I suspected such scenario though.

My partner was prescribed Rilutek free of charge here in the UK, a part of National Health Service provision. For this I am grateful. D
 

BethU

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Hi, Danijela ... Brenda is right, Rilutek is about $1,200 a month in the US. My insurance paid a little over half, but the co-pay was $500, and now I have fallen in the "donut hole" -- this great drug scheme from Medicare that says when the government has paid xx amount, the patient has to pay full cost of drugs up to whatever amt, then the gov. kicks in again.

We can order from Canada for about $500 a month, the same as my co-pay, but fortunately for my checking account, I found Rilutek's side effects too difficult to handle, so stopped taking it. Fortunately, most people don't get side effects ...

I don't think you could design a worse health care system than we have in the US if you sat down and tried. Thank God for charitable foundations like Muscular Dystrophy Assn. and ALSA.
 

Mr. Bill

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First of all I will say that my Dad died 34 years ago of ALS. There was no medication available at the time. When he was diagnosed the Dr. told him that he had a year left to live. He passed away 13 months later. He was in a nursing home most of that last year and they really didn't do anything for him other than try to make him comfortable. He eventually died of pneumonia.

Secondly, I took Rilutek for two years and was nearing the end of my LTD. I talked to my Neuro about it, he said that his mother died of ALS and he never prescribed it for her. He said that he wasn't in the business of making drug companies rich so he wouldn't speak for or against it. He wasn't too concerned when I finally decided to stop taking it. I don't mean to discourage anyone from taking it but I personally couldn't afford $1000 a month for a drug that might or might not extend my life a month or so.

Bill
 

joelc

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Where did you find it in Canada for $500? Everywhere I look it is at least $900.
 

Al

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Mine is in the neighborhood of about $775 per month at Zellers Pharmacy. I have supplemental health that covers it.

AL.
 
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Jennifer51

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Thanks both. I understand Brenda that history is not everyone's favourite subject ;) and it good to be in here and now (something I am learning, with some difficulty). I am a sociologist, so this part of my identity always makes me pose questions of this nature. Issues of equality and access matter greatly to me too, and I think historical perspective can provide some useful insights in improving things for people here and now.

That is a horrific story John. I suspected such scenario though.

My partner was prescribed Rilutek free of charge here in the UK, a part of National Health Service provision. For this I am grateful. D

danijela...how did your partner manage to get his rilutek free on the NHS...I am sure he is much younger than I am. since I am under 60, I have been told that I still have to pay the prescription charge for everything, though I am continually trying to get it for nothing...how did you do it... I would like to do that as well
Jennifer
 

Danijela

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Hi Jennifer,

I replied to your email account by doing so here as well. What I meant by 'free' is that he not paying the actual costs of the drug. He has only just started, I will have to check if he had paid the prescription charge - it was all a bit of a haze. Will keep you posted. D
 

BethU

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Opps ... Joel, I found it googling around; don't know if it was a legit site or not. I did not ask at my regular Canadian pharmacy, which is very much on the up and up, as I figured it would all be about the same.
 
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