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Care giver check in
Hey there, how are you doing? Are you taking time out for yourself? What things are you doing to help you manage your stress and nurture your relationships?
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3 Replies
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My father has been taking RCH4 for well over three and a half years and it has slowed his decline by 95%. compared to before he started on it (I have studied his ALS scores and this is correct). No side effects. The charity that gives it to us have always provided constant support, professional advice and charge nothing. There is an information site run by pals who take it. Hope this helps.
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Hi Hunter,
Good to see other users of RCH4 on here. I think we are in a very lucky position being able to have this drug. I know when my wife first activated things were very stressful for me, as I had seen my wife’s two sisters and mother die from this horrible disease and so I thought I was going to have the same thing happen to my wife. Her decline was very rapid to start with in the first months and I remember the absolute panic. We were lucky to be offered RCH4 and started taking a couple of months after activation and have been using for 6 years now. Her progression then stopped and we almost take it for granted now that there is no progression and life is somewhere near ‘normal’ and so my stress levels are very good. Don’t think I’d be quite so relaxed if things took a turn for the worse again.
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Hey there cALS,
How is everyone doing now that we are a quarter the way through 2022? Do you have any updates, funny stories or memories you would like to share?
Chime in and let us know how things are going!!
Amanda
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My cALS is my wife and I hate what this disease has done to her. Not only does she have her tasks, she must now do the things that I used to do, AND take care of me. There are not enough hours in the day for her to do something for herself. As I say, “ALS subtracts years from the life of a person with ALS, but adds years to the age of a family caregiver.”
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