Hallo from across the Athlantic

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nata

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Hi, I'm new here. I'm glad I found this forum. At the begining, sorry for bad english :D
My father also has been diagnosed with ALS 5 years ago. He can't do anything by himself. For a few weeks he is breathing harder and he started to whispering. He has problem with some kind of secretion from lungs. Does anybody know how could he deal with it? When is the right time for tracheotomy?

After the diagnose, his doctor mentioned Rilutek and Riluzol, but he told us that it's very expensive (we should order it from abroad!) but not successfully. He said that we would probably 'come to the parish' by buying that drug, and it would do no good for my father. We believed him, but today I'm not sure was that a right decision. For these five years, he's been taking only many of vitamins.

Please tell me what do you think (I read some of your posts but it's too much for my english knowledge).

Anyway, we live in Croatia, Europe (Zadar-Adriatic coast) and my name is Natasa.

God bless you all...
 

Al

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Hello Natasa. Welcome to the Forum. We are glad you have found us. Don't apologize for your English. I don't think any of us here speak Croatian so who are we to judge?

I am sorry to hear that your father is starting to get worse. The secretions can be controlled sometimes with drugs. I take one called Amitriptyline I do not know if it is available in Europe. If the secretions are really bad over here they have portable sucton machines to help pull them out. Once again I am not sure if they are available over there. The time to trach. is a decision that has to be made by the family and the Doctor.

As for the Riluzole question. There are differing opinions about how long it will help to keep you alive. Some say only 3 months and I have heard others say it may help for up to 18 months. Over here in Ontario it costs $660 Canadian for 1 months supply. That is very expensive for us but we have a drug plan that pays for it for us.


I am sure some of the others will post and give you more information. Again Welcome. Ask any questions you need to and we will try to help.
 

me

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Natasa - welcome to the sight. I do not have any information on your questions but wanted to let you know you are welcome here. I also do not live in Canada, but as they reminded me, this is really for everyone. I think it's neat to meet people from all over the world. Melissa
 

TBear

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Hello Natasa:

The survival rates for people with ALS vary but I think that 5 years is good. If your Dad has made it that long on only vitamins and good home care, then that seems to be better than the published results from Riluzol. What vitamins to you give him?

By the way, your English is quite readable and easy to understand. Ask questions if you need to... nobody here will be marking your grammar.

T.
 

nata

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Thank you all for your words.
My Dad has been taken the cocktails made of vitamins B1, B6 and B12.

He also takes the 'Swedish bitter elixier', some kind of mixture which contains medicinal herbs. My mother believes that Swedish bitter elixier was the most usefull.
 

Carol Deboer

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Welcome Natasa,

Sorry to hear about your dad. He seems to have done quite well for the past 5 years though. My husband Henry has had als now going on 8 years. Suctioning is probably how you will have to deal with the excess phlegm. Henry has a lot of it too. Coughing and choking on it are dangerous and always present. Good luck to you and your family. Henry did not take Riluzole either, we did not figure the benefits were better than the side effects so we passed on it. Keep your spirits up, and know that you are more than welcome here, anytime. Stay Strong.....

Carol D. xoxo
 

nata

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For a last few months I was considering to report that my Dad passed away, but I was thinking not to, because it may be a horrible news. Now I see that most of you are very brave in dealing with als.

My Dad died 4 months ago, on Christmas. The big hole remain in our lives, but love and beautifull remembrance in our hearts.

I wanted to say that I admire the things and care that your hospitals do for the people with als. There's no way that you can get the bipap in Croatia. My Dad had big problems with the secretion, but thay did nothing to help him (the doctors didn't know how (?) or didn't care (?!) or there is no such things here?!). I was asking and searching but there was no answer. He spend just one night in hospital. There is no word to explain how terribly that night was to him, and we brought him home so he could die surrounded with us who love him.

I wish you all to stay brave and strong. I believe that the ones who are suffering are specially loved by God. Always remember that one.

great hug from Natasa
 

Al

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We are all very sorry to read of your dad's passing. Take comfort in knowing he is out of pain. We do not like to hear of someone's passing but we are like a large family here and as we learn to deal with this disease you learn to deal with the death of our friends that we meet along the way. It is not easy but it is part of life.
We try to celebrate life every day. Some days it is easier than others. We feel your loss as it brings home the fact that not enough research is being done to cure this terrible disease. Thank you for writing and do not feel that you are unwelcome here. We all need support and it can be found here. Take care.
 

me

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Al really said it all. Please stay with our group if you feel the support could be good for you. This group needs people that have been down the road to teach those that are starting on the trip. We all can help each other. Melissa
 

Carol Deboer

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Dear Natasha,

Sorry to hear of your Dad's passing. It is very hard to deal with, I know. My dear husband Henry, died on March 14, of this year. Just a few short weeks ago. We are still reeling in shock and pain, but it does seem to get a little better each day. Nothing can prepare you for dealing with the death of a loved one. And knowing how much they suffered with this ALS thing makes it even harder. There are better days ahead, for all of us. I pray that God will sustain you and give you peace. Please stay with us, you are so welcome here. Talk soon, and Stay Strong.....


Love, Carol
 

nata

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Nov 25, 2004
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Hi, Carol,
I'm very sorry to hear about Henry, I learned that on a forum just a few days ago because I didn't come on forum for months.

This is my experience - the faith in God is the best comfort. I'm hoping and believing that death is not the end of life, it's the begining, so I'll really like to believe that my Dad is smilyng somewhere. I felt that when he passed away.

I wish you peace and comfort
 
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