Old 03-13-2011, 11:56 PM #1 (permalink)
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Default Not a happy camper

I was so hoping my 1st post would be my last....however, we met with the neuro again Wednesday for Scott's muscle biopsy results. Test results simple supported the doc's ALS diagnosis---UGGH! Doc had already told us after doing the EMG that this had been going on for quite a while...(I just thought he/I/we were getting a lil older and gettin' tired from chasing the 3-foot terrorist masquerading as our grandson). Anywhoooo....this situation stinks. Scott is a fishing fanatic and routinely fishes in tournaments....it breaks my heart to see him have such difficulty in trying to tie on lures as atrophy has already developed in his hands. I despise the fatigue and nightly cramps he is experiencing. Sticker shock so to speak when I went to pick up his 1st month's supply of Rilutek(?) Are you kidding me---$1,183.99 for one month. Thank goodness we've got great health insurance but seriously.....! Anyway, while I was hoping that I wasn't gonna be a long-term member I guess I'm gonna join ya'll on the ALS journey! I would sincerely appreciate all words of wisdom and advise!
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Old 03-14-2011, 12:00 AM #2 (permalink)
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Default Re: Not a happy camper

Sorry about the diagnosis Ruth but hope we can help.

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Old 03-14-2011, 04:06 AM #3 (permalink)
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Default Re: Not a happy camper

Quote:
Originally Posted by ruthiep View Post
Rilutek(?) Are you kidding me---$1,183.99 for one month. Thank goodness we've got great health insurance but seriously.....!
Outch , the price in France is 350 for a month.
Why is it so expensive in US?
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Old 03-14-2011, 09:41 AM #4 (permalink)
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Default Re: Not a happy camper

Ruth, I am sorry you are having to deal with the ALS diagnosis. My husband was also an avid and tournament fisherman. Now we are having to be content with breathing on a vent and eating through a PEG tube. The Rilutek is rediculously expensive but hopefully you are starting the medication soon enough to preserve his ability to remain somewhat active. The forum is a wonderful support and it has been so helpful with everyone's little tips. we will all hope for a slow progression. Keep everyone informed and updated.
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Old 03-14-2011, 10:46 AM #5 (permalink)
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Good luck on your journey. We are all here to support you.
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Old 03-14-2011, 03:53 PM #6 (permalink)
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Default Re: Not a happy camper

So sorry to hear about the ALS diagnosis because ALSucks! We're here to help you learn how to deal with the new normal, life's not over, just different.
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Old 03-14-2011, 07:26 PM #7 (permalink)
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Default Re: Not a happy camper

I am sorry about the diagnosis. Each one of us heard those horrible words one day and our life came crashing down. For me it is a loss of caring for our kids, sleeping with my husband, our home, cooking, my speech is going so communication is getting difficult. My hope for your husband is slow progression. This will give you some time to adjust to the changes. Bless your family.
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Old 03-14-2011, 07:45 PM #8 (permalink)
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Default Re: Not a happy camper

Sorry for the diagnosis. Know that you can count on us for support! Stay strong and keep the faith.
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Old 03-14-2011, 07:59 PM #9 (permalink)
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Very sorry about your husband. Good luck to y'all!
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Old 03-14-2011, 10:13 PM #10 (permalink)
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Default Re: Not a happy camper

Welcome to the family. Sorry you have to be here.
My PALS used to fish all of the time too. Like ALL OF THE TIME.
He was diagnosed almost 9 years ago. He is on a vent, has a peg, and has been locked in for like 6 years.
You will find lots of love and understanding here. We ALL get it.
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Old 03-14-2011, 10:38 PM #11 (permalink)
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Default Re: Not a happy camper

Sorry to hear about your husband's diagnosis. I remember that first hearing the diagnosis was a shock, but it was the beginning of the loss of independence that really made the diagnosis a reality and nightmare at the same time. I have found the this web site offers not only support, but also information that isn't always given by the doctors. While each person's journey seems a little different in pace and symptoms, it seems that we all eventually face the same struggles. My husband was diagnosed in April 1009 and is just now entering the severe stages. He has his peg tube, can no longer stand to assist with transfers and is using bi-pap, electric wheelchair and hospital bed. It is a heart breaking journey, but you are not alone. Remember one day at a time!
By the way, we live in Lincoln, Alabama and have found the ALS chapter to be very helpful. They just loaned us a fully electric hoyer lift that I thought we were going to have to pay $2000 in order to get the electric model. Medicare will only cover a manual lift. There is a support group meeting tomorrow March 15 at the Hoover Library from 10:30 to 12:00 noon. I am planning to attend. I am looking forward to meeting some of the people that I have only spoken with over the phone. Maybe I will see you there at future meetings. I'm not sure how far Enterprise is from Lincoln or Birmingham. I will be glad to give you my home address and phone number if you need to talk to a fellow care giver.
God bless and good luck!
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Old 03-15-2011, 10:35 AM #12 (permalink)
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Default Re: Not a happy camper

Ruth, I am also sorry you guys have to go through this. It takes a while for perhaps everyone to get over the surreal stage. I hope your husband's progression is slow--that does make it so much easier to become at peace with whatever is going on--you have time to get used to it when it hasn't yet progressed to the point that it is full time. I hope you find comfort, encouragement and friendship on the forum.
Hugs,
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Old 03-15-2011, 05:23 PM #13 (permalink)
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Welcome Ruth,
Sorry about the ALS diagnosed, but you will find answers,support,understanding and prayers
here.blessings, Pat
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Old 03-15-2011, 08:09 PM #14 (permalink)
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So sorry you had to join our forum, but know we are all here for each other and to help.
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Old 03-16-2011, 09:20 AM #15 (permalink)
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Default Re: Not a happy camper

Sorry about the terrible news. HOWEVER, my wife is coming to her 5th year with ALS! Yes she is confined to a wheel chair, eats by PEG tube and is on a ventelator but we still have some quality of life. Granted its winter here in Canada but once the snow is gone, in a few weeks, we have day trips and we spend lots of time outdoors etc. Please make the most of this terrible disease and the folks here are a great resourse.
Good luck and stay positive.
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