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gcas

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Nov 27, 2011
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3
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Loved one DX
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US
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AK
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Chugiak
My husband was diagnosed in 2009 with Bulbar ALS. We have kept positive all along. We face each day with hope that a cure could be found anytime. He even tried to be put on the clinical trials list but never was successful. I am frustrated now with so many problems. I feel like the hospital he is in just wants me to sit back and wait and give up. and that they are making all the calls on his care. And mostly I fear they just want to stop caring for him and just let him die. I want all that can be done to be done. I would like to know where is the best hospital or hospitals or facilities at for ALS patients. We live in Alaska and might as well be on another planet there are no chapters on anything up here except a very very small MDA office. And they pretty much too have nothing to offer. I am very tired of the people who just because his condition is classed as terminal they treat you and him like you might as well hurry up and die. They have no hope or possitive attitude. I see these cancer center commercials about a possitive attitude. where can you find one like that for ALS patients. If there is a wife out there who has lost her husband and can give me some support I would love to talk with her. also if anyone can help on our other problems too I would appreciate it. His car is most inportant to us.
 
God Bless you
I was diagnosed with the same around the same time. It's very frustrating.
 
I am so very sorry! I, too, wish there was more awareness.

The only facility I know of that will truly let pALS live with ALS is in Boston. Otherwise, we are all in the same boat.

Why is he in hospital?
 
I wish I could do more than offer my prayers for you and your husband. Is there any hope in Canada up there, a chapter or something?
 
I'm sorry you're going through this. I think you are the best advocate for your husband and you should be the one to direct a lot of his care. So many people in hospitals don't know about ALS and aren't sure what to do for it. You must be well read on this disease. Try to stay one step ahead and make sure the staff at the hospital are also one step ahead. My husband passed away in August - 15 weeks yesterday. You can write to me if you have any questions. Take care. Yasmin
 
I just lost my husband on November 20th. I much felt the same as you on many of our ER and hospital visits. They pretty much teh Doctors in my area just didn't know what to do. And the ALS clinic refused to take him when he was sick in the hospital after hours of calls I made to beg and plead to be transfered to that hospital. All fell on deaf ears. And there again your right, we all may as well be on another Planet, just not there in Alaska but Anywhere USA, where we have ALS. If there is any thing I can do to help or any questions or advice I can give, just give me holler. :) Take care.


-Miss you every moment of everyday Bran.
 
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We live in Rochester, Minnesota. Our ALS clinic is the Mayo Clinic. They have an amazing team of what I like to call "professional caregivers." our local ALS chapter is 80 miles away, and they are absolutely amazing and " here for us" as well. They have come to our home to make sure we have everything we need. They have a loan closet that helps out a lot too! The support group is active via the Mayo Clinic ALS clinic. We do not feel alone at all. I would recommend the Mayo to anybody, even better if you live nearby.
 
Live in Maryland. My dad went to Hopkins, then Univ of Md / ALS clinic. The people who work there bent over backwards in a very compassionate way. They even sent a thinking of you card after dad passed. When he had problems with any of the machines he had, they were there after hours or the next day to fix it. Alot of times they would tell us what to do over the phone. Good Luck.
 
I am sorry it has taken me this long to respond to you. I have soooooo, many problems and issues besides my husbands health. He is not doing good. He is heavly medicated as he is in so much pain if not. He has severe bed sore on his right side of bottom. The doctor expects him to get infection which will be the end of him . So my holidays and life stink. How are you doing tho" you said you were diagnosed at same time ? and with same type ?
 
Dear Pandora, Thank you for your responce. I am struggling with the feeling like what is left of his life is slipping away while everyone just waits and does nothing. I am a do'er and I cant stand doing nothing but watch him slowly die. I also cant stand the thought of him not being with me ever again. He is apart of me that will be gone and I need that part . I will be missing it for the rest of my life . I cant even comprehend him being gone . I will be alone again. This is so scarry and depressing and sad . My worst nightmare. How are you handling it ?
 
Hon ~

You talk about being a doer. So be that for your husband.

The day my husband got his diagnosis, we vowed that he wouldn't be the ALS patient, wouldn't be the guy with a terminal disease. We would live to the fullest, and we did just that. We took a trip to myrtle beach, we took a cruise, we took our kids to the zoo, etc... we went on dates to various restaraunts, concerts, movies, and when he wasn't feeling up to going in the last week, I still made him a part of it, and dressed him up for Halloween and took pics of him and our children together. I don't regret one moment, and am glad I was his advocate and that he didn't just wait for it to take him.

It might be hard to figure out how to do various outings, but be his advocate, and figure out ways to do that. On some of our dates, I dressed him, put him in his chair via the hoyer lift, I drove him in our handicap van, I drove his chair for him, put a towel over his chest, fed him and myself at the same time, I carried the roxonol (morphene) and would give that to him via mouth when he asked for it.

I know I must have looked silly, driving his chair (while walking backwards) down the aisle of the place where the Dierks Bentley concert was at, and people probably wondered why I dragged him out for that, why I didn't just keep him home. But if you saw his eyes and the big grin on his face.... got to hold his hand, and know you totally made his day.. then you would know, that it was all totally worth it.

We focused on not fighting what was going to take him, but by spending what time we had, making the most of it, we didn't just sit and wait for it to take him.

Hopefully this helps you. Because I do not regret a moment I pushed and made moments and memories that I will cherish for always.

~ Becca
 
Becca,
That's why you can lay your head down knowing you make his life full of love and laughter. That's what counts the most.
 
Merry Christmas and Happy Holidays to all. Our Steering Committee knows that 2012 will be the year we reach a tipping point...from "There is no cure",... to ....Many trials already showing Treatments that work...join us by signing our petition and volunteering to help, we need more activist folks to join us, or recruiting someone to help advance our Mission.


Mission statement:
As ALS patients and their caregivers, we are committed to accelerated access to treatments that will slow progression or provide a cure.

Goals:
1. To assure compassionate access for ALS patients to treatments that have demonstrated in Phase II trials the ability to slow progression or cure ALS.
2. To cooperate with all willing ALS stakeholders.
3. To assure that funds are made available to allow patients compassionate access to treatments..is
 
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